My journey to (steroid) rosacea. Gemini Tx. Pictorial.

[Twickle Purple]

2-1/2 years ago. Age 40.

http://www.kennedylee.com/TP3/TP-01.jpg
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I’d used steroids since I was 2.
I kept my atopic dermatitis under control with twice weekly,
full body application of high potency (betnovate) ointment.
After which I would be pink for a couple of hours.

http://www.kennedylee.com/TP3/TP-02.jpg
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The areas below my eyebrow and top of my cheek bones
start to become brown due to steroid usage. I have had
telangiectasia since my early teens but in a pattern that
I think looks okay.

http://www.kennedylee.com/TP3/TP-03.jpg
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2 years ago. I start flushing after eating and at other
times for no known reason. At this time my gastro
system pretty much shut down and food passed undigested.
I developed malabsorption. Flushing is limited to my face
and under my chin. Flushed areas are swollen. Ears and
chest are okay. My face is so tender I can not tolerate
the nose pads on my glasses. My eyes are affected so
I cannot wear contacts. I found titanium bridges that
rest on my nose. Thankfully I have a good sized one.

http://www.kennedylee.com/TP3/TP-04.jpg
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My eyes are intolerably itchy. They keep me up at night
and I find nothing gives them relief. A MD prescribes
steroid drops and my family MD in Edmonton has a
phone consult with me and says to take 100,000 IU
Vitamin A drops with my morning shake. He attributed
eye issue to malabsorption. This helps. Eventually it is
diagnosed as Ocular Rosacea. This is my first real
‘rosacea’ symptom. It is not an uncommon occurrence
to experience ocular symptoms first.

http://www.kennedylee.com/TP3/TP-06.jpg
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My face develops red swollen areas independent of flushing.

http://www.kennedylee.com/TP3/TP-07.jpg
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Areas at the side of my nose, mouth, chin and neck
become inflamed. The sides and top of the nose and
chin develop what appears to be a large hive which
is solid and stays for a week. This swelling eventually
is what turns into thickened 'orange peel' skin.

http://www.kennedylee.com/TP3/TP-08.jpg
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I assume it is allergy related. My neck is getting spotty too.

http://www.kennedylee.com/TP3/TP-09.jpg
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My neck area becomes more and more spotty and
blister/pustules appear and stay. I think it is a new
manifestation of atopic dermatitis. And since steroid
isn’t working I apply Elidel then Protopic for a few weeks.
My rosacea goes nuts so I revert to Elocon.

http://www.kennedylee.com/TP3/TP-10.jpg
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My hairline and scalp become inflamed and the neck
and chest area develop a diffuse redness.

http://www.kennedylee.com/TP3/TP-11.jpg
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Age 42. I am now permanently red. My ears, chest and
full face are inflamed. I cannot tolerate any exposure to
sunlight and no longer go outside. I rarely will venture
to the grocery store and have become a shut-in. I have also
become quite depressed as I can find no one to help me.

http://www.kennedylee.com/TP3/TP-12.jpg
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This is after 1 month of Doxycycline and Metrogel.
My swelling is greatly reduced and my eyes feel normal.
This picture is taken before I leave for a Gemini laser
treatment on my full face, neck and upper chest.
This is the Left side of my face.

http://www.kennedylee.com/TP3/TP-13.jpg
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1 hour pre-treatmentwith Gemini.
Right side of my face.

http://www.kennedylee.com/TP3/TP-14.jpg
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1 hour post Gemini treatment.
I applied a topical ‘freezing’ gel every 10 minutes 1 hour
before the treatment and took antihistimine and two
Gabapentin (600mg) so I would not hurt too much.
The treatment was tolerable. The only area that was
painful was around my collar bone.

http://www.kennedylee.com/TP3/TP-15.jpg
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1 hour post Gemini treatment. I was uncomfortable for
about 45 minutes post treatment. Then the stinging passed.
They applied a topical steroid in the doctors office :shock:
and then gave me two baggies with a couple of pieces of
frozen gauze in each as an ‘icepack.’ Next time I will bring
my own icepacks, those were pathetic.

http://www.kennedylee.com/TP3/TP-16.jpg
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1 hour post Gemini treatment.
I didn’t continue with icepacks that day once the pain
had passed. Big mistake.

http://www.kennedylee.com/TP3/TP-17.jpg
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1 hour post Gemini treatment. This was the tender area
during treatment. Probably because I did not apply much
topical freezing gel here and it is close to bone.

http://www.kennedylee.com/TP3/TP-18.jpg
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1 hour post Gemini treatment.
My left cheek shows some black fried vessels.
I am starting to swell.

http://www.kennedylee.com/TP3/TP-19.jpg
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24 hours post treatment. I started to really swell.
So began, too late, to apply icepacks. My cheeks and neck became
so swollen I could not smile. My black spot is absorbing already.

http://www.kennedylee.com/TP3/TP-20.jpg
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48 hours post treatment. My cheeks and neck swelling is
calming down but my eyes continued to swell. I think if I
had applied ice throughout that first night I would not have
become this swollen. But, I have steroid damaged skin/tissue
so who knows.

http://www.kennedylee.com/TP3/TP-21.jpg
__________________________________________________ ___

7 days post treatment! Still a bit plump and the treated areas
feels like shards of glass under the skin when I apply topicals,
which I hope will pass. I am on the mend!

http://www.kennedylee.com/TP3/TP-22.jpg
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I am scheduled for another treatment in 4 weeks.

[claudia]

Hi Twinkle ~

I hope you're feeling better! You've been through alot. As I read what meds you're taking and then look at your pics I wonder if doxy is really doing everything it should for you. You may want to switch to another antibiotic that'll really knock out the inflammation. I've had luck with Bactrim, a sulfa antibotic.

It takes experimenting when using antibiotics but if you get one that works then after a month you should see dramatic reduction of inflammation and blemishes. It's wierd but the way you're flaring almost seems more rashy like an allergic response...especially since it travels down your neck and onto your chest. You could have rosacea + an allergy problem. (I have rosacea + cystic acne...)

Have you gone to an allergist? Do you eat wheat or flour products or dairy products? You might want to try cutting out those out for several weeks and see what happens. It's hard to do but worth it. This may also help with the digestive problems. Keep a detailed journal of what you eat and then how your skin looks.

Vaseline may not be the best thing to use. It seems "inert" but it really plugs pores and if you have a rashy p&p thing happening in addition to the rosacea then the vaseline could spread it or make it worse. I'm not sure what would be the best thing to "cut" the metrocream with but maybe a cream formulated for sensitive skin that won't clog pores...i.e. something from Olay or Neutrogena or ???

These are just some things that may help with what you're already doing. Keep us posted on how things go!

CV

[Twickle Purple]

Hi Claudia,

I'm allergic to Sulfa drugs unfortunately. I have tons of allergies. I'm an atopic individual, if I'm not allergic to it now, give me a minute :roll: I have gone every avenue possible in my time. Even spending a little R+R at a teaching hospital which was embarrasing and not in the least bit beneficial -- to me! While this last episode was occuring I went completely homeopathic. My DR. from Edmonton (Dr. Trethart, I highly recommend him) was an MD who believed that nutrition was the key. I would get all my supplements through his office. I have too many food allergies to maintain a balanced diet. I have gone the lamb/pear route to see if I could calm my gut, once I started flaring from the pears (always organic, including the meat) I started going the shake route, rice protein and add stuff with that. I'm allergic to everyting eventually so I rotate. When I moved to the Sunshine Coast (BC) I started seeing a local homeopath and she was very optimistic at first, then as time went on she became less so, and from there she had nothing more to offer. I did all her allergy tests, as well I redid an ELISA I had done a year previously with Great Smoky labs to see if A) the test had any accuracy and B) if anything had changed. I am pleased to say that all of the testing was pretty much bang on as was the accuracy of the ELISA. So that was helpful, to her, it showed me nothing. I just got more depressed. I was on the licorice to bring my BP back up, at this time I was peaking at 90/60 which was akin to my suppressed adrenal days. My lows were 80/40 and at those times I could not get out of bed. This was before the rash developed.

Once the rash began I went to the regular local MD. The homeopath, bless her, she tried, could do no more.

At first, the skin behavior was very much in keeping with an eczema rash, I was positive that's all it was. The MD, however, was positive it was carcinoid syndrome! She was rather excited about this and brought her books into the office with us. She was blithely unaware that she had dropped a bomb on me. According to her it had to be this, it all fit so perfectly. So I spent the next 3 weeks going through tests. You see carcinoid syndrome is always fatal, but you don't die from the cancer, no this is a lovely drawn out affair in which the unpleasant side effects of the cancer kill you, in about 20 years (with my symptoms, I would have been at about the 10 year mark if this was an accurate diagnosis). Oh, joy. My husband and I were devasted.

Everyone looks for a Zebra.

It was not carcinoid, my hormone levels were fine. But nothing I could do helped my skin, it got worse and worse and continued to act differently than usual. I have atopic dermatitis (hence the over use of steroids) so my skin barrier doesn't function all that well, moisture retention is a serious issue for me. Vaseline is the very best thing out there. I couldn't image living without it. This is the gold standard for moisturizing people like me. My pores were non-existent til the rosacea, pimples were never a problem. The 'eruptions' I have now come from below the surface not from anything I am applying. They are like inflammed blisters, but they do not pop and they are not 'removable (I tried, ow ow ow!).

Since starting the Doxycycline and Metrocream I really do have a dramatic reduction in the inflammation and blemishes. My chest was full of them (I'm not going to post those shots though) and my face is much less round. My eyes feel normal and that is a huge relief to me. I was concerned putting this stuff on my facial skin expecting an eczema flare but the skin has been great.

My biggest concern was using the Gemini -- would I be better, worse -- would my face fall off :roll: (seriously I didn't know what to expect.)

I don't have typical rosacea, it's not confined to my face and steroid usage is a huge part of it. I hope this all makes sense.

Twickle Purple.

[clsykes00]

Hi Claudia,

I'm allergic to Sulfa drugs unfortunately. I have tons of allergies. I'm an atopic individual, if I'm not allergic to it now, give me a minute :roll: I have gone every avenue possible in my time. Even spending a little R+R at a teaching hospital which was embarrasing and not in the least bit beneficial -- to me! While this last episode was occuring I went completely homeopathic. My DR. from Edmonton (Dr. Trethart, I highly recommend him) was an MD who believed that nutrition was the key. I would get all my supplements through his office. I have too many food allergies to maintain a balanced diet. I have gone the lamb/pear route to see if I could calm my gut, once I started flaring from the pears (always organic, including the meat) I started going the shake route, rice protein and add stuff with that. I'm allergic to everyting eventually so I rotate. When I moved to the Sunshine Coast (BC) I started seeing a local homeopath and she was very optimistic at first, then as time went on she became less so, and from there she had nothing more to offer. I did all her allergy tests, as well I redid an ELISA I had done a year previously with Great Smoky labs to see if A) the test had any accuracy and B) if anything had changed. I am pleased to say that all of the testing was pretty much bang on as was the accuracy of the ELISA. So that was helpful, to her, it showed me nothing. I just got more depressed. I was on the licorice to bring my BP back up, at this time I was peaking at 90/60 which was akin to my suppressed adrenal days. My lows were 80/40 and at those times I could not get out of bed. This was before the rash developed.

Once the rash began I went to the regular local MD. The homeopath, bless her, she tried, could do no more.

At first, the skin behavior was very much in keeping with an eczema rash, I was positive that's all it was. The MD, however, was positive it was carcinoid syndrome! She was rather excited about this and brought her books into the office with us. She was blithely unaware that she had dropped a bomb on me. According to her it had to be this, it all fit so perfectly. So I spent the next 3 weeks going through tests. You see carcinoid syndrome is always fatal, but you don't die from the cancer, no this is a lovely drawn out affair in which the unpleasant side effects of the cancer kill you, in about 20 years (with my symptoms, I would have been at about the 10 year mark if this was an accurate diagnosis). Oh, joy. My husband and I were devasted.

Everyone looks for a Zebra.

It was not carcinoid, my hormone levels were fine. But nothing I could do helped my skin, it got worse and worse and continued to act differently than usual. I have atopic dermatitis (hence the over use of steroids) so my skin barrier doesn't function all that well, moisture retention is a serious issue for me. Vaseline is the very best thing out there. I couldn't image living without it. This is the gold standard for moisturizing people like me. My pores were non-existent til the rosacea, pimples were never a problem. The 'eruptions' I have now come from below the surface not from anything I am applying. They are like inflammed blisters, but they do not pop and they are not 'removable (I tried, ow ow ow!).

Since starting the Doxycycline and Metrocream I really do have a dramatic reduction in the inflammation and blemishes. My chest was full of them (I'm not going to post those shots though) and my face is much less round. My eyes feel normal and that is a huge relief to me. I was concerned putting this stuff on my facial skin expecting an eczema flare but the skin has been great.

My biggest concern was using the Gemini -- would I be better, worse -- would my face fall off :roll: (seriously I didn't know what to expect.)

I don't have typical rosacea, it's not confined to my face and steroid usage is a huge part of it. I hope this all makes sense.

Twickle Purple.

TP,
Very well documented history. You seem to be well prepared to speak with a doctor knowledgeable about rosacea about your case.

Have you purchased Dr Nase's book? The book has a very good listing of topicals/drugs etc. that rosaceans can potentially use (potentially because everyone is different). Given your excellent job in recording your history, I would even consider remote consultation with one of the physicians noted below (or Dr Nase). You can write to any of them, and you might have a good shot at getting consultation from one of these that primarily deals with rosaceans.

Are you comfortable with the protocol (settings, passes, etc.) that your laser physician is using? Is the Dr you are using a known physician by the board (Soldo, Bitter, Darm, Crouch, etc.)? In my opinion (maybe other think different on this), I think the laser physician is being too aggressive with you given the facial inflamation received post laser. Ideally, you would be treated with some IPL by a Bitter like trained physician and would have no inflamation nor papura afterwards.

Also, ice is not necessarily a positive application to rosacea skin. Ice attracts blood flow to the face of rosaceans, something we need to avoid.

Best,
Trey

[Twickle Purple]

Hi Trey,

I've got a thorough knowledge of my history but haven't really a clue about Rosacea. That's where this board is a real gift. You all are very knowledgable and much smarter than me on these matters.


The fellow that I'm using is local. I made the appointment with him then found this board. So, after reading posts here, instead of my first treatment being all out I asked for test spots instead. And I asked alot of questions about treating skin like mine, none of which they could answer. I was their first. Truthfully there are not alot of people in the general population that use as much steroid as me (most that have it while young grow out of this skin problem) and even less that use it on the face. (As an aside on facial steroid application, I eventually switched from Betnovate to Elecon ointment as it was 'face-friendly' :lol: -- it's a mid-potency flourinated steroid. And when I tried Elidel and Protopic my initial skin reaction was incredible, no red, no rash... then BOOM, worse than ever. I have not come across a lot of smart doctors, most just do what the drugs reps tell them.) Anyway, short rant. I responded better to the test spots than I'd than hoped so I went for the treatment.

I have not read Dr. Nase's book. It is certainly something I have considered. I have read up on Dr. Crouch's Web site and his position on steroid weakened skin is to treat the skin before even considering laser. When I mentioned this my Derm said his laser was gentle and he had no concerns about the treatment. In all fairness, I think I got so swollen because I didn't apply icepacks that first night. I'm really careful with the packs. I put the little slushy pack in a pillow case and then roll the pillow case. As the pack becomes 'warm' I unroll a bit, once the case is completely unrolled it's time for a new pack. (I have two so one is always at the ready.) I have an added issue with cool items on my face, I have trigeminal neuralgia (it's what I was prescribed Neurontin for) so given my druthers I wouldn't put anything cool near my face at all. I have order a whole bunch of Natragel products that I'm hoping will help as much as the packs and not cause any other side effects.

I've followed Keisha06 (Diane) posts, she lives down the road from me (and LL just a short distance away as well). Diane has gone to Dr. Darm and posts very highly of him. LL posted here briefly wondering about post Gemini swelling, she had gone to the same place as I. So Dr. Darm is someone I would consider seeing. I've read that people will respond differently with each treatment. I'm going to try one more treatment and do everything 'right' before I write this off. I'm pretty desperate for relief right now.

Twickle Purple

[clsykes00]

Hi Trey,

I've got a thorough knowledge of my history but haven't really a clue about Rosacea. That's where this board is a real gift. You all are very knowledgable and much smarter than me on these matters.


The fellow that I'm using is local. I made the appointment with him then found this board. So, after reading posts here, instead of my first treatment being all out I asked for test spots instead. And I asked alot of questions about treating skin like mine, none of which they could answer. I was their first. Truthfully there are not alot of people in the general population that use as much steroid as me (most that have it while young grow out of this skin problem) and even less that use it on the face. (As an aside on facial steroid application, I eventually switched from Betnovate to Elecon ointment as it was 'face-friendly' :lol: -- it's a mid-potency flourinated steroid. And when I tried Elidel and Protopic my initial skin reaction was incredible, no red, no rash... then BOOM, worse than ever. I have not come across a lot of smart doctors, most just do what the drugs reps tell them.) Anyway, short rant. I responded better to the test spots than I'd than hoped so I went for the treatment.

I have not read Dr. Nase's book. It is certainly something I have considered. I have read up on Dr. Crouch's Web site and his position on steroid weakened skin is to treat the skin before even considering laser. When I mentioned this my Derm said his laser was gentle and he had no concerns about the treatment. In all fairness, I think I got so swollen because I didn't apply icepacks that first night. I'm really careful with the packs. I put the little slushy pack in a pillow case and then roll the pillow case. As the pack becomes 'warm' I unroll a bit, once the case is completely unrolled it's time for a new pack. (I have two so one is always at the ready.) I have an added issue with cool items on my face, I have trigeminal neuralgia (it's what I was prescribed Neurontin for) so given my druthers I wouldn't put anything cool near my face at all. I have order a whole bunch of Natragel products that I'm hoping will help as much as the packs and not cause any other side effects.

I've followed Keisha06 (Diane) posts, she lives down the road from me (and LL just a short distance away as well). Diane has gone to Dr. Darm and posts very highly of him. LL posted here briefly wondering about post Gemini swelling, she had gone to the same place as I. So Dr. Darm is someone I would consider seeing. I've read that people will respond differently with each treatment. I'm going to try one more treatment and do everything 'right' before I write this off. I'm pretty desperate for relief right now.

Twickle Purple

TP,
Steroid induced rosacea is unfortunately a tougher animal to get right. What does Dr Crouch suggest using for steroid induced rosacea prior to lasers?

It's interesting that your pictures show you after a light test patch. Also caught my attention that you were their first patient. Unfortunately the quality of the physician using the laser is just as essential as the laser being used (especially for older machines). The wrong physician can exasperate your condition.

I hear conflicting reports on Dr Darm - some good and some bad. I know however Dr Darm uses the N-Lite machine among others, which is supposedly one of the best lasers for "thickening" skin (steroid induced rosacea suffers usually are battling extremely thin skin that needs to be built again). Unfortunately, thickening the skin with N-Lite takes several (at least 10+ times) treatments.

Trey

[Twickle Purple]

Thanks Trey.

Dr. Crouch offered no advice on treating steroid rosacea, as far as I found on the 'net he only suggested treating the skin and didn't offer suggest else. Dr. Nase's book sounds a smart investment. I'll order it.

The trickiest thing with my rosacea is it is not the typical steroid reaction. It did not go away once steroids were removed. I weaned my whole body off the steroids trying to beat this, and for my long-term health. My Derm pretty much stated that I have good old rosacea, how I got it is no longer germane and the actual symptom manifestations are unique to us all really.

I am fair skinned and a blusher, I would have gotten Rosacea anyway. The full flushing caused by the steroids, aggravated by post menopausal flashes and flushing brought it to where I am now. I also think my food allergies were a huge part of it. I flush from them. I've also the added luck to have what is called aerosal allergy -- so when I'm around something I'm allergic to I will flush, I don't need to touch it I just need to be around it. Most allergens you need to be in contact with. This is like someone with a peanut allergy, some are okay as long as they don't eat the peanuts, others can be ill (or die) if they are around anything with nuts. Flushing is usually the first indicator I have that I'm around something bad for me (which is pretty much everything, forget department stores.) People cannot come into my home because they use product that will make me bloom (my euphemism for flushing). I am much better now. I used to be out with flu like symptoms after big flushing bouts.

I hate flushing. :evil:

Twickle Purple

[redhotoz]

Hi TP

Thanks for posting your photos. I've not read a great deal on steroid use although I have done some reading on the topic. I do hope you can find some relief soon.

Please do keep us up-dated with photos.

Sending you all my positive vibes!

Jen

[Millie]

Twinkle - great photo diary!

I wanted to let you know that no matter how many ice packs I apply after IPL treatments, I always look extremely swollen (like I got hit by a very large truck!) - your swelling photo looks just like me! It will go down after a few days - the swelling is a very good sign - lots of those nasty blood vessels being absorbed back into your system. Please be encouraged!!! You look pretty normal for a great post-laser treatment! Try sleeping with your head up (in a recliner) if the swelling is really bad. I always looked worse in the morning.

My skin was also very sensitive post laser. You might try refrigerating some aloe (the green stuff you can buy at Walmart) and putting that on your face to cool it - try applying the aloe and sitting in front of a fan!

Blessings to you!

[Twickle Purple]

Hiya Red, I'll keep updating for sure. Once the new red lamp unit comes I'm hoping that, over time, I can demonstrate real progress! I am feelin' the good vibes, and it helps alot!!! You're all so good for my mental health! :D

Dear Millie, thank you so much for your words of encouragement. It is reassuring to know that the swelling is typical and that the sensitivity is expected! Sleeping in an upright position was hard and half way through the night I gave up. I just so desperately needed my sleep, by the third night I didn't even bother to try. That's when I lost my eyes :lol: Next treatment I will behave 100%.

Have a lovely day ladies!
Twickle Purple

[Twickle Purple]

Two shots, one with flash one without, taken yesterday showing
the colour difference between my face and hand.

With flash:
http://www.kennedylee.com/TP3/TP-24.jpg

Natural daylight:
http://www.kennedylee.com/TP3/TP-24a.jpg


__________________________________________________ _________________

Two weeks post Tx and this morning my face is quite poofy and my
cheeks and jaw are hot and red. I understand this is expected and
that I will not see the actual benefits for a few months yet.
My test areas went red after a week and stayed that way as well.

Natural daylight shot.
http://www.kennedylee.com/TP3/TP-23.jpg

[redhotoz]

Hey that's a great idea to show the difference in colour between the hand and the face. Do your hands ever go red too? I find when my body is heated, my hands go red too and the veins stick out. Sometimes, if it's just my face that is on fire. my hands are stone cold! Go figure!

Thanks for the update TP. It's good to follow progress with pics.

I reckon we should devise a little red light that shines on the face, for daily 'wearing'. When I have taken a photo sitting under red lights, my skin looks normal! Maybe we could invent a hat with an inbuilt red light! LOL

Jen

[purplesarah]

That is an amazing photo diary, you have done a great job in documenting your progress.

My positive energy is being sent to you!

[Twickle Purple]

Hey that's a great idea to show the difference in colour between the hand and the face. Do your hands ever go red too? I find when my body is heated, my hands go red too and the veins stick out. Sometimes, if it's just my face that is on fire. my hands are stone cold! Go figure!


Hi Jen,

My skin colour is normally very pale. I used to wear the fairest make-up colours available, this side of clown white. :D The only time any other parts of me are red is if there is over heating, which would be expected, and if there is rash, which is my eczema. I've generally got pretty low blood pressure so my feet and hands can look dead!

Hi purplesarah,

Thank you so much for the positive energy! I'm able to make this diary because of my long history with eczema. A long time ago a doctor suggested I photograph any changes so they can follow my progress, add to that my hubby is a photo journalling junkie and I've got a bunch of imagery that I hope dies with me! (Don't read anything x-rated into that! I'm not that sort :lol: )

I'm sharing it because I had so many questions myself and wanted to see what to expect. I could find nothing really helpful. I'm hoping this is helpful to someone. I've lost all sense of vanity. But, I'm hopeful that too will return in time. :D

Twickle Purple

[Twickle Purple]

Three weeks post Gemini treatment.

My flushes are short lived and my face is a nice colour.
I really look white at night after I apply my Metrocream.
My husband commented on my lack of bloodvessels.
The larger ones are very reduced.

http://www.kennedylee.com/TP3/TP-25.jpg

[claudia]

You look beautiful - no kidding! What an amazing journey...thank you for sharing it. I'm so glad your treatments are working! You must be very happy :D

[Twickle Purple]

Thank you Claudia :lol: I admit it, I keep touching my cheeks. They're so smooth. I never thought they'd be smooth again.

PS. I updated the pic so the colour was more accurate. I take these in front of a window so some are very bright depending on the conditions outside.

[Max]

It's really amazing - even in the pic taken after gemini treatment where your face is quite swollen you can see that redness has been reduced dramatically...

Thanks a lot for sharing your pics...

[Twickle Purple]

Hi Max,

I wanted to show what someone may except from Gemini. I had searched and searched when I was really swollen, sure that it was too much and not able to find anyone who could tell me otherwise. (My Derm's office was closed for 3 days and by the 4th I was on mend.) Now I know this can be a typical response and anyone contemplating the treatment that sees this will have one less worry, or surprise! :shock:

Still, I'm feeling a bit nervous about doing it again because I feel so good right now and I hated being a pumpkin head! Argh! One more week... til POOF all over again.

Tickled Purple

[Quench]

Thanks for a great photo diary TP. Your results are very impressive. Hope that you keep on improving and looking forward to seeing more pics further down the line.

[MARPUSBEAN]

Your Gemini treatments are going to be bad, so would IPL, because your skin is fragile from so much steroid use and your other condition, but keep going as it looks as if the Gemini is really tackling the underlying vascular problem and smoothing the skin.
Once you have achieved the maximum with the gemini you can then look at developing a gentler regime for your face and it should contine to improve.
Avoid those steroids at all cost!!
If you can manage your dermatitis with any of the usual fungicidal types without a cortisone content (as I do) these will be gentle enough for the rosacea element.

[natalja]

Wow Twickle, you are really looking much better already!

May I ask; is this Gemini Txt IPL or laser?

Natalja

[claudia]

If you can manage your dermatitis with any of the usual fungicidal types without a cortisone content (as I do) these will be gentle enough for the rosacea element.

I'm curious what you use. I use a systemic sulfer drug (bactrim) and it's the very first thing that's ever worked so effectively and so quickly to stop p&p's that I wonder if my skin problems are partly fungal...I'd love to use something topical vs systemic if there is such a thing! thanks...

[Twickle Purple]

Thanks for a great photo diary TP. Your results are very impressive. Hope that you keep on improving and looking forward to seeing more pics further down the line.

Hi Quench,

I am ecstatic with my progress. I have another appointment on the 17th and hope the side effects are not as ‘pronounced’ :lol: Keisha06 has posted previously that she did not see the actual results until many weeks after her treatments and there was a marked improvement. So I am being patient. I have mostly really good days, I still flush every day but my face feels ‘cool’ to the touch in spots and I really like that. I had company at my home over the weekend that used alot of scented product, deoderant, shampoos & laundry detergent so I've ben in a flush for days now :cry:

’ve got more mug shots coming right before my next zap session and I’ll do the following days again to show how the treatment affects the second time round.

Twickle Purple

[Twickle Purple]

Your Gemini treatments are going to be bad, so would IPL, because your skin is fragile from so much steroid use and your other condition, but keep going as it looks as if the Gemini is really tackling the underlying vascular problem and smoothing the skin.
Once you have achieved the maximum with the gemini you can then look at developing a gentler regime for your face and it should contine to improve.
Avoid those steroids at all cost!!
If you can manage your dermatitis with any of the usual fungicidal types without a cortisone content (as I do) these will be gentle enough for the rosacea element.

Hi Marpusbean,

I don’t respond well to the protopic and elidel because they don’t go deep enough into the dermis to cause benefit and they create a horrible eczema flare within 2 weeks, everywhere on the body and a rosacea flare on my face.

I am at the point in my life where I am aware that I can not continue as I have. I am quite motivated! I’ve weened my self down to 1% hydrocortisone in a white petro jelly base. I’ve got a mild rash all over that I am able to manage with daily applications so it doesn't flare and the hydroxyzine is a real life saver! My anti-itch elixir! Hopefully the Red Light Therapy that I will begin shortly will be the answer I am looking for.

Twickle Purple

[Twickle Purple]

Wow Twickle, you are really looking much better already!

May I ask; is this Gemini Txt IPL or laser?

Natalja

Hi Natalja,

I am using the Gemini laser which I understand is green light. I’ve requested that the next treatment be done by the same technician because she did such an efficient treatment last time.

I really do not know very much about the different lasers options so I have ordered the book “Lasers in Aesthetic Surgery”. Hopefully this will be helpful!

Twickle Purple

[Twickle Purple]

I'm curious what you use. I use a systemic sulfer drug (bactrim) and it's the very first thing that's ever worked so effectively and so quickly to stop p&p's that I wonder if my skin problems are partly fungal...I'd love to use something topical vs systemic if there is such a thing! thanks...

Hi Claudia,

I can’t use sulfa drugs at all. I can’t even use drugs with similar molecular structures (or something like that) I have an allergy that is very severe. I understand it is not unusual, but it is unfortunate! Sulfa drugs are helpful for many things! I understand that folks with Seb Derm use antifungal shampoo on the face, such as Nizoral. I've read it can be harsh on skin but is a prescribed treatment. You may want to do some reading here on the forum on Seb Derm threads and see what you can learn. I wonder though if the bactrim does something different than a topical does though. From what I've read about Rosacea, it is not really understood why the antibiotics work at all!

Best of luck!
Twickle Purple

[Twickle Purple]

5-6 weeks post treatment my collarbone area remained painful to the touch (shards of glass feeling). Broken blood vessels started appearing at about 5 weeks but seem to settling down now and the area is becoming much less sensitive.

http://www.kennedylee.com/TP4/BrokenVessels1.jpg
http://www.kennedylee.com/TP4/BrokenVessels2.jpg
http://www.kennedylee.com/TP4/BrokenVessels3.jpg


__________________________________________________ ___________

My eye's are becoming affected again, so the Doxy isn't performing as well. I'm hoping that this is perhaps due to seasonal irritation and that they calm down. My right eye is most affected usually. About once a year or so I loose the eye lashes from the inside corner to the middle. This time I lost the chunk in the middle.

My dog has panus, an auto-immune condition of the eye, and I borrow his tacrolimus eye drops when my eye feel really horrid (the right eye). I only have to do it for three nights and the eye calms down. Tacrolimus drops aren't available this way for us humans yet, but if I'll give it to my dog I'll give it to me too. :)

This is a picture post swelling, about 4 days after the last tacrolimus application. It works really well but, they put it in vegetable oil so I smell like french fries. :roll:

http://www.kennedylee.com/TP4/eyelashes.jpg

[Quench]

Can you explain how rosacea is affecting your eyes? I don't see anythiing unusual about your eye.

[Twickle Purple]

Hi Quench,

That's because I never had the presence of mind to take a picture while it's happening :roll: It was, at its peak, an uncomfortable, itchy eye with redness and the lid looked like a fat lip.

This picture is 4 days post tacrolimus so the eye is now feeling really good, the picture shows the loss of lashes that occurs... but even they are starting to come back. I debated whether to post it, but decided to as it shows the loss of lashes -- just in case this occurs with anyone else and they don't know why, so they'll see it's not unusual. The lids become so sensitive and inflamed that the lashes just fall out. Which is a relief because they hurt where they connect.

[redhotoz]

Hi TP

Thanks again for posting your pics. Maybe I'm a little tired right now but what causes the loss of lashes? Ocular Rosacea? I just kind of wonder about the Demodex Mite theory...those little blighters living at the base of hair follicles and whether addressing that might help? Or have you already gone down that path?

Hey, if your eyes flare up again, please do take a pic! I still need an OR photo for the info brochure on Rosacea.

Jen

[Twickle Purple]

Hi TP

Thanks again for posting your pics. Maybe I'm a little tired right now but what causes the loss of lashes? Ocular Rosacea? I just kind of wonder about the Demodex Mite theory...those little blighters living at the base of hair follicles and whether addressing that might help? Or have you already gone down that path?

Hey, if your eyes flare up again, please do take a pic! I still need an OR photo for the info brochure on Rosacea.

Jen

Hi Jen!

I missed you, I hope you enjoyed yourself!!

It is occular rosacea. I have permanent large vessels on my eyeballs under the lid area. These cause alot of irritation and itch when they are acting up, then the eye generally feels like I want to take it out and take a scrub brush to it, along with the gritty feeling of something trapped under the lids.

I seem to get a flare up every year, but since my dog started the Tacrolimus they are very short lived. I was willing to do anything for relief, it is unbelievable and would drive me nuts and keep me up all night. Previously the eye doc had me using steroid drops which I hated to use because I think steroids are bad news generally and they didn't work at all anyway. Nothing worked. Not for the irritation and not for the dryness. The Tacrolimus is the only thing that works when it's in full flare. When it's not in a flare, and before the Doxy, it was just dry and gritty and a bit crusty (vaseline at nights helped the crusty bits). The thing I noticed first with the Doxy is the my eyes felt good! Normal-like and no crusties or sands in the morning either. That's gone now, my eyes feel like they did before the Doxy. Next time I flare, I will resist treating right away and take a picture. I don't know why I lose the lashes, I've never really looked into the mites scenario. You probably have forgotten more than I'll ever know about this condition! I'm so into relief that once I have some I forget about the problem... not the best way to be for Rosacea!

xox
Twickle Purple

[redhotoz]

You probably have forgotten more than I'll ever know about this condition!

:lol: Probably!!! :lol:

Had a hoot at the band competition. Yeah, ok, one could laugh and say "at band camp"...and yes...it all happened, although we don't have any flutes in our brass band! :wink: We didn't win but we put up a good fight. I think their plan was to make us party so hard the night before the early morning comp so that we were all hung over and would play dreadfully. Guess they were counting on the "Jen Factor" - the wild country gal - to drag the masses up on the dance floor through the wee hours of the morning! LOL However, I still mananged to reach the high notes and make my horn sing. Well, everything sounds wonderful when one...well...probably still has a level of about 75% alcohol in the blood system! LOL I'm just kidding! But I did manage to catch up on a few hours sleep on the drive back to the city - thank goodness I didn't have to drive, not that I would have! Ouch! Ahhhh, one has to let their hair down once in a while and that was my hair letting down wildness for probably the entire year or maybe two! LOL

Hey, I really want to know more about OR. I get the feeling that I'm headed down that path from the irritated eyes, gritty feeling, build up of 'stuff' in my eyes. My left eye has been the one to give me the most grief but just recently the right one came up with a double sty on the lip of the upper eye lid - ouch!!! I have always put the eye problems down to stress. Maybe I should stop fooling myself, huh?! Maybe I should just go back to band camp and forget about it all! :shock:

Ok, enough from me! Missed you too TP!

Luv Jen x

[Twickle Purple]

Second Gemini Treatment

The red light therapy that I am doing has reduced my facial swelling remarkably since my first Gemini treatment.

Here's a pic from a flush I had a couple of days ago, even flushing this looks 100% better than I did when I wasn't flushing before I had my first Gemini:

http://www.anniroc.com/TP/PreGemini2.jpg

----------------------------------------------------------------------------------

Here's a picture of my cheek before the Gemini treatment today showing the telangiectasia. The tone of it is a lot milder than it was pre Gemini shown earlier.

http://www.anniroc.com/TP/cheeks.jpg

----------------------------------------------------------------------------------

And here's a picture of my face after I got home from my treatment. The difference from the same time lapse in treatment one to this is really noticable. I'm no longer as puffy.

http://www.anniroc.com/TP/TP-Post2.jpg

----------------------------------------------------------------------------------

I'll do the 24 & 48 hour shots again this time. We did the same coverage as the first time, the differences this time are:

* Less/milder telangiectasia, as this is the second treatment
* Longer time on MetroCream which has good anti-inflammatory effects for me
* Daily 20 minute 660nm LED sessions (I've only missed two days since I got it)
* Natragel cooling/nourishing masks post treatment

I'm seeing the light at the end of this tunnel!!

[Twickle Purple]

Post treatment, day 1.

Well, I'm huuuuuuge. It's below the neck to the collarbone, a solid rectangle :shock: much more than last time. The tech had focused on the flush zone of my jaw line and right under my jaw/chin with 3 passes on full strength, so this is what has gone poof more than the other parts. But the eyes are swelling -- from the bottom up. Last time I swelled first in the lower part of the face and on day 2-3 it moved to the upper parts and pretty much shut my eyes down. I hope I'm being descriptive enough, because this is one state I won't share with the viewing public :oops: If anyone is going through this and needs to be comforted with what they're experiencing PM me and I'll send a pic to give some peace of mind. The biggest reason I swell I think, is that I do not sleep with my head elevated like I'm told to. I can't sleep that way, I tried it the first time and gave up. I need my sleep, so I'll put up with the swelling for a few days. So, if you have this treatment, sleep with your head elevated otherwise you'll be a pumpkin :D

[Quench]

I notice a huge difference. Thanks for keeping us up-to-date with your progress.

[Twickle Purple]

Thanks Quench. I'm a balloon today. I hate this part -- I look like I went a few rounds with MikeTyson!

It's a good day for chocolate.

-----------------------------------------------------------------------------------------

Post Gemini Treatment #2, Day 3.

I am amazed at what we'll do to ourselves to get better. I look too ghastly to post a picture of my whole face, my vanity just won't let me. Here's my eyes:

http://www.anniroc.com/TP/Swelling-eyes3.jpg

[Froggirl]

That looks pretty swollen!

Hopefully it pays off with big results :)

[Twickle Purple]

Hehe, I think it will. I see the 'big' part of the results right now :lol:
The first time I was pretty freaked out by how much I swelled. :shock:

I already see more skin tone and a lot less telangiectasia. This Gemini laser is the bomb. I've had telangiectasia for so long it's going to be kinda weird to be pale.

[Quench]

You poor soul! That looks so sore.

Looking forward to seeing the photos of you after the swelling has gone down though.

[Twickle Purple]

Thank you Quench :D

I'm being soothed with chocolate and am all snuggled in with a snoring old dog on my lap. I'm hoping next weekend I'll be right and tight again -- I will not leave the house otherwise! :lol:

[DukeCity]

Hi Twickle - How often are you using your red light now, with the swelling like it is??? -

[Twickle Purple]

Hi DukeCity,

I haven't used it while I am this swollen. I stop everything with the Gemini. I didn't want to tinker with what it is that the Gemini is doing/has done. I couldn't get my goggles on even if I wanted too! :lol: I'm going to start again Monday. I'm hoping then the next few weeks are a condensed version of what took 6 weeks last time and I see the remnant swelling disappear more quickly, without the glass shards under my skin feeling and the breaking blood vessels. I can do without that.

Twickle Purple

[phlika29]

I know just how your feeling. A year or so ago I went through some laser treatment that made me swell. All I can say is you should spend this time relaxing and pampering yourself as much as possible. Eat some good food, drink lots of water and put on some films.

I know that you don't like it but it definately helps to keep your head raised, even a little. I don't know if you take grape seed extract but apparently this can make the swelling worse if you don't stop them before treatment.

Best wishes and thanks for the reply about RLT. When I've done abit more research I will ant to ask you some more questions no doubt.

Best wishes

sarah

[redhotoz]

Hi TP

Hope things settle down quickly for you. I couldn't quite work out exactly why my face swelled up last week (for days on end) but thankfully it has settled now. Kind of scary looking to go to work with a balloon face! Admittedly it was not as swollen as your post-Gemini but really uncomfortable. I've come to the conclusion that swelling is worse than p&p's when facing the public! Agghhh!!!

I've been slack with my red lights, just way too much going on here of late. My boyfriend is back in town and has promised to rig my array up above my bed. So hopefully I shall nod off into lah lah land under red lights in a few days time! I know it helps! Of course, I am no "Red Light Therapy guru" as has been stated on a web site that was linked on this Forum a few days ago. I can only go by my own experience. At least I don't confuse laser light with LED light! One simply has to laugh about that really. Well, maybe not, because it's dangerous to confuse the two!

Anyway, hope things settle soon for you. Look forward to seeing the outcome of your Gemini treament.

Jen

[Twickle Purple]

I know that you don't like it but it definately helps to keep your head raised, even a little. I don't know if you take grape seed extract but apparently this can make the swelling worse if you don't stop them before treatment.

Hi Sarah,

I stopped taking everything before my treatment, all my supplements and even my prescriptions. It's such an uncomfortable procedure I didn't want anything tinkering with it. I don't take grapeseed, I tried it a few years ago and it bothered my eczema.

I am settled in front of the fire today, the weather has turned and it is windy and raining -- very shnuckly, definitely a day to put on a stew and watch movies!

I had my Gemini Thursday AM and I will not use my big RLT unit on my face til Monday. I know it would work to accelerate the reduction of the swelling but I really don't know enough about what is taking place so want to let my body do its thing at its own pace til the gross swelling is calmed. I have used the litte handheld unit though around my collarbone on the lymph areas. My neck is really swollen and it's painful to swallow. The V at the base of my throat is poofed out like a little pillow.

Today is much better though, I'm still not recognizable but my swollen eyelids are not covering my eyelashes now -- that was uncomfortable, they poke and itch. The tears are still constant and are like acid in the outer corners of my eyes. I'm getting raw there. I've put alot of vaseline around my eyes, every hour or so to provide a barrier.

It's going to all be worth it!

Thank you so much for your kind wishes.
Twickle Purple



Hope things settle down quickly for you. I couldn't quite work out exactly why my face swelled up last week (for days on end) but thankfully it has settled now. Kind of scary looking to go to work with a balloon face! Admittedly it was not as swollen as your post-Gemini but really uncomfortable. I've come to the conclusion that swelling is worse than p&p's when facing the public! Agghhh!!!

I've been slack with my red lights, just way too much going on here of late. My boyfriend is back in town and has promised to rig my array up above my bed. So hopefully I shall nod off into lah lah land under red lights in a few days time! I know it helps!

Hi Jen,

I'm sorry to hear that you've been swollen, it is the part I hate the worst! I look huge, I've shown some pics here when I'm red and puffed and a few days later it's gone and you'd never know it was such a short time span. It looked like I'd gone on a diet or something and shed like 50lbs. It is the hardest, my chin goes south and my cheek bones take a holiday.

Been distracted by love, eh? Well, put that man to work and rig your system. It would be really great if you could explain what your system is comprised of. There are enquiries into the home made arrays, I know that David made one and has good instructions. Others have mentioned home made arrays too and I've said I thought this was the mose economical approach, if one was familiar with electronics that is. It's really exciting that folks are going this route. I am so happy for them! I think we are at the forefront of a beneficial treatment. The fellow winning the Millenium prize for the Blue LED will hopefully put more interest and focus on this relatively new technology. Peter has posted an interesting letter in his thread (http://forum.rosaceagroup.org/viewtopic.php?t=4166&start=15):

Adrian Warburton, Director, DermaLux writes:

The understanding of light Therapy is growing fast but it is all relative. I once spoke to a Nobel Prize winning Professor of Medicine who told me that the sum total of the knowledge of the functioning of the human body is 15% and most of that is mechanics and plumbing so we have a long way to go with the biochemistry.

We are ahead of the curve ladies!

Twinkling Purple

[Twickle Purple]

Post Gemini Treatment #2, Day 4.

I was impatient and had an RLT session today. My swelling was down this morning and has continued to go down throughout the day. So, I plopped myself down, dialed in full strength and put the timer to 20 minutes. For the first few minutes I was pretty nervous, I felt like I was bubbling under my eye! At about the 10 minute mark everything felt really calm and became soothed, my skin took on a cooler feel. As soon as I was done I snapped this pic. Just the eyes for now, to show the reduction in swelling from yesterday.

http://www.anniroc.com/TP/Eyes-day4.jpg

[Twickle Purple]

Recently, I have been posting a lot on Red Light Therapy and have begun using the 660nm LED unit regularly with results that make me happy.

I had a couple clarifying questions asked that I would like to repeat here because it puts my RLT experience into perspective with all the treatment I am undergoing for my Rosacea.
------------------------------------------------------------------------------------
TP

I'm glad you are having success. How much do you think your improvement is down to the laser and how much down to the red lamp?

I'm thinking of buying one but the expense puts me off slightly and any advice would be gratefully recieved. :lol:

Hi phlika29,

I think that the Gemini has offered the most profound changes no doubt about it. My face was covered with pronounced telangiectasia, the first treatment of Gemini reduced them by about 1/3 and I believe that this second application will have the same results. My 3rd treatment will be with a 5mm head to 'zap' the stubborn remainders with depth and precision. The first 2 treatmenta were done using a 10mm because of the expansive coverage required.

What the RLT works on is different. It controls the cause of my telangiectasia: the flushing and the blushing. I have such an over reactive face now that I've been in pretty much a permanent flush since 1-1/2 years ago. I was on doxepin for a few years and it stopped working, I tried clonipen, prednisone, a whole roster of antihistamines and nothing made a dent. The Doxycycline has given me an enormous relief for my irritated eyes and I can't say enough good things about that MetroCream. I apply it at night and after the first week I was getting a tingling numbness to my lips and a cool tingling all over my face. Within the month my face would go pale after each application, and I realized the anti-inflammatory effects. It didn't last more than a couple of hours but it brought much needed relief to the facial tissue. So the Doxycycline (for the eyes and minor P+P) and MetroCream (for the facial tissue) are also part of my improvement.

Sorry this is so long! I want to make sure that it's all properly represented. Anyway, back to the RLT. When I am done my treatment my facial skin feels cool to the touch. And then for the next 24 hours it's like a soft, moist, dewy cloud bubble surrounds it. I don't know how better to describe it! Rolling Eyes It is such a nice feeling. I am noticeably paler and the effects are cumulative -- the more sessions I have the more my skin tone becomes different. My redness is different and more confined to the heavy telangiectasia areas and it just feels so darn good. I can't wait til there is some study for Rosacea and RLT, there is obviously so much more going on than what is commonly understood with RLT. The effect on my inflamed tissue is calming, healing and it is reversing the effects of the rosacea ... my skin is looking younger and more resilient. Some days I get a glimpse of a healthy vibrancy and glow I haven’t seen in years. My nose is getting its definition back and the pores on my nose and across my cheeks are getting small again (I could just about sing that one it makes me so happy!). My whole body is getting the effects too. I am losing an overall swelling which I wasn’t even aware I had. My watch is much looser, my rings have more movement and my boots around my calves and ankles have more space. It’s working on something, and I like it. Very Happy

I am so grateful that this was available for me. I had read enough from everywhere I possibly could to be certain this was worth investing in and taking a risk on. It requires a commitment, finding those 10-20 minutes everyday is important. Maybe after a few months I can have days without it and over time more gaps of time in between, as Peter has experienced, but I think this is improvement will always require some maintenance. I have sub type 1 rosacea so I can’t say it will help any other sub types. But it’s doing more and better than I thought and certainly beyond what is understood about it currently.

I wish you all the best with this Phlika29!
Twickle Purple

So what does the RLT treat specifically...

underlying redness?
surface vessels?
acne?

I'm confused as to what specific effect it is having. I keep hearing, "yeah, it makes my skin softer" and "I think it's helping" but specifics would be nice. Are doctors recommending the use of this? If not, why not?

thanks folks

Reduced redness, reduced flushing, reduced heat, reduced pore size, improved skin texture and better skin tone. That about sums up the benefits I'm experiencing. As for the doctors, there is a link to a PDF that Froggirl has added this morning. Her thread is here:

http://forum.rosaceagroup.org/viewtopic.php?t=4168&highlight=

Page 16 and 17 of the PDF have a pro and a con opinion. The pro fellow is describing the effects that I am experiencing and have described above. The con fellow says "LEDs are clinically bogus until proven otherwise." That's weird logic.

Twickle Purple

[banshee]

Post Gemini Treatment #2, Day 4.

I was impatient and had an RLT session today. My swelling was down this morning and has continued to go down throughout the day. So, I plopped myself down, dialed in full strength and put the timer to 20 minutes. For the first few minutes I was pretty nervous, I felt like I was bubbling under my eye! At about the 10 minute mark everything felt really calm and became soothed, my skin took on a cooler feel. As soon as I was done I snapped this pic. Just the eyes for now, to show the reduction in swelling from yesterday.

http://www.anniroc.com/TP/Eyes-day4.jpgHi Twicks-

wow the swelling is markedly better......I'm not sure if you know this but part of red light's benefits is lymphatic assistance. It helps clear fluids that have collected in tissues.

Don't be afraid to use your light when your face is bad. After a laser tx I usually wait a couple days until I restart my LED but if you go a week w/o you will lose your build up that took 6-8 weeks. Think of your cells like a sponge, you do a light tx & it absorbs photons but if you don't keep it moist it dries out over several days.

LED's do make you flush a bit during a treatment, so if you are pre-flared you will feel it for a twee. But after awhile like you said it will calm down-just like post laser treatment.

As I mentioned to David on another thread- if it were true red light was so deleterious bottom line is those of us who have been using it daily for years would have out of control conditions. Not even the Yag would be able to clean up the mess & I feel the progression of my condition has been stopped. I'm trying to repair years of damage but contrary to reports I have gotten better not worse. I still have flares- sometimes bad ones but as we know there is no cure & I'm infinately more functional now than 4 yrs ago.

Do you do your eyes open or closed? Be sure if you switch to infrared (800nm+) you use your goggles.

Good luck-I hope it continues to work for you. :)

[Froggirl]

I just checked the tracking for my Elixa red light array and should have it tomorrow. Can't wait to give it a go on my nearly v-beamed face!

[Quench]

Fantastic progress TP.

[Twickle Purple]

I'm not sure if you know this but part of red light's benefits is lymphatic assistance. It helps clear fluids that have collected in tissues.

I'm really counting on it. This is an area I need to work on, which is hard to do. The 660nm+880nm panels were purchased with this in mind. I am hoping that this will also reduce my eczema symptoms. I am starting to tune into Chinese medicine, my accupuncturist from Edmonton (only reason I regret moving was leaving him) focussed on my left side in very specific areas. Those are the areas that give me the most 'ache'.

Don't be afraid to use your light when your face is bad. After a laser tx I usually wait a couple days until I restart my LED but if you go a week w/o you will lose your build up that took 6-8 weeks. Think of your cells like a sponge, you do a light tx & it absorbs photons but if you don't keep it moist it dries out over several days.

I went back to it as soon as possible. I do agree it is accumulative. I like your analogy of the sponge. it's perfect. Yesterday morning I did my face and last night I did my upper chest area. This is the area that is feeling the most discomfort and was what took the longest to 'heal' after the last session. I'm not sure I want to do Gemini again, so I'm hoping that I will have enough improvement this time that I can just use the LED going forward and that my telangiectasia will stay the course without rebuilding over time.


LED's do make you flush a bit during a treatment, so if you are pre-flared you will feel it for a twee. But after awhile like you said it will calm down-just like post laser treatment.

I've found that the minor flushing occurs within the first fiew minutes, I feel the sensation before everything goes really calm and cool. My sessions are 20 minutes and I am immobilized under the full face unit so I can not see if what's happening is visible, but I do feel it a bit for sure. By the time my 20 minutes are up, it's like I had a lovely dip in the pool. Nicely cool and refreshed.


As I mentioned to David on another thread- if it were true red light was so deleterious bottom line is those of us who have been using it daily for years would have out of control conditions. Not even the Yag would be able to clean up the mess & I feel the progression of my condition has been stopped. I'm trying to repair years of damage but contrary to reports I have gotten better not worse. I still have flares- sometimes bad ones but as we know there is no cure & I'm infinately more functional now than 4 yrs ago.

I have read that scientific awareness of our body is about 15% and most of that is particular to mechanics and plumbing. One of the most off-putting
behaviour of the medical profession is to discount what they do not understand and to pontificate on matters they understand very little of. In this case, it is apparent that there is so much more occuring that we/they do not understand. The proof is in the pudding -- so to speak.


Do you do your eyes open or closed? Be sure if you switch to infrared (800nm+) you use your goggles.

My eyes are something I don't mess with, I'm an absolute chicken even for contacts. And, my husband is at me about the goggles too. I don't wear them for the red (660nm) because I'd read the 660nm is beneficial to the eyes and I have occular rosacea. My eyes/eyelids have the same 'moist' sensation after a treatment. I only open them during treatment absent mindedly, then shut them once I've registered what I'm doing. My mind can wonder in those 20 minutes I am lying there. I've just bought some eye pads that I will add to the metal goggles when I use the 660nm+880nm panels. The goggles are a bit compact and I've got big eye sockets, so I've got my 'eye' out for something bigger/better.


Good luck-I hope it continues to work for you. :)

Thank you! I think it will and it is. My husband said I looked like I had a 12 year olds skin last night! I love that man. :D

[Twickle Purple]

I just checked the tracking for my Elixa red light array and should have it tomorrow. Can't wait to give it a go on my nearly v-beamed face!

I hope it comes in quick so you can start using it! I was pretty cautious in my thinking when I first got my RLT unit. That lasted a couple of days til I realized that this was just plain good for me. But, test it for 10 minutes, if you go shorter you may not get past the minor flush that occurs. I've got my fingers crossed for you! I want to hear about your Vbeam experience!

[Twickle Purple]

Fantastic progress TP.

Alas, the dramatic progress in swelling reduction ended. Now I am just experiencing a slow leak :lol: I'm not going out this week!

[IowaDavid]

As Banshee said--give the red light a few months, and you should see a good reduction in your flushing and general redness. Red light is most likely a cumulative modality (well, in my estimation, at least), so, the more you use it, the better off you'll be. ;)

David

[Twickle Purple]

As Banshee said--give the red light a few months, and you should see a good reduction in your flushing and general redness. Red light is most likely a cumulative modality (well, in my estimation, at least), so, the more you use it, the better off you'll be. ;)

David

I have seen the light :D

[Twickle Purple]

I'm moving on.

Some folks appreciated my efforts, some didn't.
I need to stay focused on positive energies.

Peace and love.
Twickle Purple

[Quench]

I'm moving on.

Some folks appreciated my efforts, some didn't.
I need to stay focused on positive energies.

Peace and love.
Twickle Purple

Hope you're not leaving the forum TP - you have much to give.

[redhotoz]

You have been a breath of fresh air to this Forum, TP!

I do hope that a little time out will help to re-energise. I find I have to do that every now and then.

You have been a tremendous support here for so many. We need more folks like you here!

TP, you have provided a great deal of information and I have read your posts with great interest.

Thank you so much for everything that you have done and we all look forward to seeing you back posting after a little time out. We need you here!

Luv Jen x

[Peter]

I'm moving on.

Some folks appreciated my efforts, some didn't.
I need to stay focused on positive energies.

Peace and love.
Twickle Purple

Hope you're not leaving the forum TP - you have much to give.

Yes don't go!!!

Don't allow others to get you down as they are in a minority. We need honest, genuine people like yourself who want the truth and are prepared to help others fight rosacea in return. At the end of the day that's what's it's all about.

Peter

[natalja]

Yes, please don't go TP!
Now things are going a bit better with you you can of course always cut down on your time on this forum and use your time and energy for other things, but you've been such support for some of us, most of us perhaps.. And also people who do well after certain treatments are very valuable to every one else. Besides: you have such a sharp mind, strong and good judgement and option, it would be such a waste if you left.

Natalja

[Froggirl]

I agree and really hope you don't go.

[Penguin]

TP,

Please don't leave, your posts have meant a great deal to me...I'm a shy poster, your red light info & reports keep me hopeful!

Regards,
Penguin

[phlika29]

Tp

Sometimes boards can really overtake your life. If I were you I would take a break for a few days and concentrate on your recovery.

I find that I have to set myself timelimits otherwise whole evenings dissapear.

Sarah

[Twickle Purple]

I am really sorry to cause any problems with this. I feel very bad to abandon anyone. Once I've taken a time out and regrouped I'm going post on the Yahoo support, the posts are shown in the list of new posts on this forum too. It is heavily moderated and I need that kind of filtration. I've become too sensitive and harsh words effected me more than I need right now.

Peace and love, is the best medicine for the human condition!
Big hugs to you all,
Twickle Purple.

[GJ]

Grim news. Very sorry to hear to it, TP.

According to the good folk at the Reader's Digest, laughter is the best medicine. Apparently, laughter is very bad for rosacea though.

Be advised that some of your lighthearted sallies may not get to see the light of day elsewhere.

[Coyne]

Hi TP,

I'm sad you're leaving :( Maybe after a break from this site you can come back. I hope so. I enjoy reading your posts and find them very helpful. I think internet forums can be quite draining so maybe a rest is best.

Peace and Love,

James

[Peter]

Hi

I really don't understand her sudden dramatic departure unless of course she has received the same type of abuse and threats that I have had previously.

Will try and contact her to find out what happened unless she returns in the meantime? Anybody else heard from her?

Peter

[redhotoz]

I've been in contact with TP and her decision seems final but I do hope with some time out, she may return. I don't know what 'broke the camel's back', so to speak. I miss TP already! :cry:

Jen :cry:

[Millie]

Twinkie (Ha ha!!)

I truly hope that you choose to come back. Please shed light on exactly what happened to you to make you choose to leave. You have been INVALUABLE - INVALUABLE! A huge source of inspiration for so many. Thank you!

Millie

[Twickle Purple]

I read some very wise advice before I began my Gemini treatments, I will try to find where it was that I read it, but here is the gist of it: Make sure that you are emotionally and mentally in a very good place before doing this as you will find that you become run down and any troubles will seem magnified.

This is very true. And I am going to post this because what I have just experienced illustrates it perfectly.

The heart of it is, that I was in a healing crisis and all my energies were used up. I was neither strong nor sensible. I had become drained by what I had thought was helpful, but was destructive. I will focus now on my treatment, and will continue to share what I learn. I will support and help in any way I can, and I will leave the other stuff out of it. I thank you for your kind wishes and patience.

Most sincerely,
Twickle Purple

[porcorosso]

Glad you changed your mind TP, your posts have been most useful 8)

[Twickle Purple]

Thanks porcorosso, I'm going to try to stay useful :wink:

Hi TP

Oh I thought that feeling was just me being stupid. I also go from being quite up to feeling really low after my treatment to the extent I thought that the laser messed with my brain.

I feel this way for a few weeks and then it just goes. I think that its the initial expectation and then the reality.

Glad to know I'm not alone with it (next treatment in a week).

Sarah

[phlika29]

sorry that message above was from me, my computer normally signs me in automatically so hadn't noticed that it posted as a guest.

Sarah

[Twickle Purple]

Hi TP

Oh I thought that feeling was just me being stupid. I also go from being quite up to feeling really low after my treatment to the extent I thought that the laser messed with my brain.

I feel this way for a few weeks and then it just goes. I think that its the initial expectation and then the reality.

Glad to know I'm not alone with it (next treatment in a week).

Sarah

Thanks Sarah.

This was a real rough one emotionally. I wasn't expecting that at all!
This is good to know going forward. My husband can lock me in a room with a funny book for a week. :wink:

I'm glad I'm not alone in this. I felt so abashed by my departure once my head cleared but thought it was important to be upfront about it. This way folks know why, and are aware of an unexpected side-effect of the treatment too. My husband thinks it's because I'd experienced such profound tissue trauma around the face that my resources were used up with healing -- I just plain old ran out of pie (diving term, loosely means used up).

I am surprised by the emotional ups and downs of this condition and the treatments! It's something I'm going to have to be more aware of.

Good luck with your treatment next week! Please let me know how you do.

Big hug!
Twickle Purple

[Twickle Purple]

I have posted a little bit ;) about the results I'm having with my Red Light Therapy. Anyone who's managed to get all the way through this thread will know what I was hoping for with RLT/LLLT. I've been trying to find as much information as I can on the modality and have made an effort to share what I've come across. In some cases I've posted the same bit in all the active RLT threads, just so that anyone just reading one won't miss it.

One of my most hopeful goals was to find an alternative to steroid use. The HC in petro is no longer working and my skin is full out rash and scabby. My dermis has become very rough, eczema thickened and ancient looking, especially my arms and legs. I'd never let it get this far and was surprised and disheartened that it was still that big of a problem. I'd recently had a custom array of 660nm+880nm LEDs made up that I could use on my eczema skin among other things. So with my fingers crossed we tried it last week:

One 10 minute 660/880nm session, directly on (my tummy) skin, set on high.
Immediately before the treatment is on left and 20 hours after the treatment is on the right:

http://www.anniroc.com/TP/Devices/CompTum20hrs.jpg

I'm using it on my tummy almost everyday now, but set on low. I'm hoping that it will help heal my 'insides' too. Maybe by healing my gut I can eat more things and not have such bad rashes or flushes. I don't know the extent of what LLLT is capable of yet so I'm going to try it on everything and see. It will either work or not. So far, so good.

[fut]

I definately see improvement. Congrats.

[Twickle Purple]

Thanks fut. I have seen the light. :D

[Twickle Purple]

Some folks have become irate with my many posts on RLT. I do not understand the energy behind them. RLT is an exciting treatment that can help many. It is new and safe. Anecdotal reports are very hopeful.

I have attempted to share as much as I could so that folks can read and form their own opinions. I have purchased a few different RLT units for different uses and they have become as much a mainstay for me now as my ointments were. I have shared my experiences with these. I am not scientific, I am an end user and my posts reflect that.

If my posting is prolific on this subject right now, please be reassured that it cannot remain so. I am posting what I have come across and the supply of information is surely being depleted! So have patience with me, the balance will be restored and I will only post what is new, either new found or newly experienced.

Kind regards,
Twickle Purple

[Peter]

Some folks have become irate with my many posts on RLT. I do not understand the energy behind them. RLT is an exciting treatment that can help many. It is new and safe. Anecdotal reports are very hopeful.


Hi TP

No I don't understand the mentality of these individuals either. You are doing a great job and just ignore people like this or if necessary just tell them nobody is forcing them to read your posts. I am sure many on here, including myself, are very interested in your results and what you post will no doubt help others decide whether to try this treatment themselves.

Whether they like it or not RLT is something that is real, is available now and for the majority of people who try it appears to be helping. We know it will never be a cure but it sure is better than treatments which will never happen or are years away from being on the market, assuming they are eventually proven. I am all for research but most people want better treatments now and not in 10 years time.

Please continue to keep us all advised of your experiences.

Best wishes

Peter

[Twickle Purple]

Thank you so much for your kind words and encouragement Peter.

I know that you've met resistance on this subject, to put it mildly.
As you have used this for over 8 years, your experience and results were a huge factor in my decision to look into RLT and learn as much as I could. I am very glad that I did, and I have you and other members of this forum to thank for it.

Kind regards,
Twickle Purple

[Peter]

Hello TP

No worries just carry on with the great work you are doing.

Well the only negative stuff originated from one source and that has been exposed and dealt with now so it's time to move forward.

Like you I believe in RLT and felt it was my duty to share it with others so they can hopefully achieve the same benefits. That's exactly what you are doing and you know the saying "You can lead a horse to water but you cannot make it drink." All you can do is present the facts and it's up to the individual to decide themselves if they want to try it. It's as simple as that really.

I would like to point out that Kristen (Banshee) and David have also benefited from using this treatment and have given up a lot of their own spare time posting about their experiences and trying to help others. Hopefully when we all eventually move on then someone else will take over.

Good luck

Peter

[Strive]

TP,

Have you ever heard of Enbrel for eczema? It's kind of scary stuff because it suppresses the immune system, but it has worked wonders, where nothing else did, for a friend of mine.

[Twickle Purple]

Have you ever heard of Enbrel for eczema? It's kind of scary stuff because it suppresses the immune system, but it has worked wonders, where nothing else did, for a friend of mine.

Hi Strive,

Thank you for that information, Enbrel is certainly an exciting treatment option for many people. I have a compromised immune system, a drug like this is not something my body can handle. I am limited in my options and this is why I found the RLT to be a promising course of action for me. It does not remove the disease states; it acts like my other medication does in that it inhibits the symptoms, but in a 'wholesome' way (if I can use that word to describe it), by reducing an underlaying action. I have been very encouraged by the results, but I recognize that I must be diligent and committed with its application, the same requirement as with my other medication. The only downside is the lack of convenience with RLT, it requires time -- something the oral and systemic meds did not. I rationalize this two ways: it is creating a mechanism of action (don't know what it is yet) so that my body is working the way it is supposed to which will be better for my health long-term; I am forced into a down-time which I never took the time for otherwise. I am learning to meditate during my sessions -- quieting the brain is much harder to do than I thought!

I've added a little info below on Enbrel which works to block TFN (Tumor Necrosis Factor) as well as findings from a LLLT / TFN study to illustrate the similar results that can be achieved.

Here's a description of Enbrel (http://www.enbrel.com/index.jsp?f=7) which describes that it works on TNF:

ENBREL is a type of protein called a tumor necrosis factor (TNF) blocker that blocks the action of a substance your body's immune system makes called TNF. People with an immune disease, such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and psoriasis, have too much TNF in their bodies. ENBREL can reduce the amount of TNF in the body to normal levels, helping to treat your disease.

Here are findings (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16503786&query_hl=3&itool=pubmed_docsum) of a study of LLLT on TNF:

OBJECTIVE: The aim of this study was to investigate if low-level laser therapy (LLLT) can modulate acute inflammation and tumor necrosis factor (TNFalpha) levels. BACKGROUND DATA: Drug therapy with TNFalpha-inhibitors has become standard treatment for rheumatoid arthritis, but it is unknown if LLLT can reduce or modulate TNFalpha levels in inflammatory disorders. METHODS: Two controlled animal studies were undertaken, with 35 male Wistar rats randomly divided into five groups each. Rabbit antiserum to ovalbumin was instilled intrabronchially in one of the lobes, followed by the intravenous injection of 10 mg of ovalbumin in 0.5 mL to induce acute lung injury. The first study served to define the time profile of TNFalpha activity for the first 4 h, while the second study compared three different LLLT doses to a control group and a chlorpromazine group at a timepoint where TNFalpha activity was increased. The rats in LLLT groups were irradiated within 5 min at the site of injury by a 650-nm Ga-Al-As laser. RESULTS: There was a time-lag before TNFalpha activity increased after BSA injection. TNFalpha levels increased from < or =6.9 (95% confidence interval [CI], 5.6-8.2) units/mL in the first 3 h to 62.1 (95% CI, 60.8-63.4) units/mL (p < 0.001) at 4 h. An LLLT dose of 0.11 Joules administered with a power density of 31.3 mW/cm(2) in 42 sec significantly reduced TNFalpha level to 50.2 (95% CI, 49.4-51.0), p < 0.01 units/mL versus control. Chlorpromazine reduced TNFalpha level to 45.3 (95% CI, 44.0-46.6) units/mL, p < 0.001 versus control. CONCLUSION: LLLT can reduce TNFalpha expression after acute immunocomplex lung injury in rats, but LLLT dose appears to be critical for reducing TNFalpha release.

[phlika29]

TP

When are you going to post a photo of your latest treatment, post swelling? I can't wait to see how much better its got. =D>

Sarah

[Quench]

Those tummy pictures are very encouraging. keep up the good work.

[Twickle Purple]

Hi folks,

I sent this as a PM and thought it would be useful for an update to my thread as well.

I believe that the laser treatments follow the 'law of diminishing returns' in that with every treatment you will see less dramatic improvement. My first treatment results were pronounced, the second treatment caused such extreme swelling that I swear I will never have really tight skin on my face again! And the results were only OK -- certainly not worth it. The tissue was so assaulted that it is just in the last month or so getting back to normal. I have fragile facial tissue anyway from years of steroid use, so I think that I may not be as resilient as some folks. But in the main I think we all have pretty tender tissue there.

One of the things I have learned here, on the forum, is that we all can react so differently to things. What I find has worked best for me is my RLT and metrocream (I have at least 20 tubes stockpiled I am so concerned of running out!). The metrocream is an absolute for me, but I must dilute it with a 1/4 of vaseline because straight-on application is too harsh. I use it only at night and never miss a night. Another promising addition to my arsenal is Singulair.

I still have a lot of telangiectasia all over my face, but nothing like before, and my base colour is now white -- not red. I can live with this. I have accepted that I will always have rosacea so I work with that mind-set now. The last few weeks here have been sunny and the sun touching my face no longer causes a steam-scald feeling. Perhaps in a few years I may tolerate it a bit again. I have started to go out without a hat on overcast days.

Sorry for the long post, just wanted to give you a full picture. The short version now: :D I think 2 treatments gave me the best I could hope for, beyond that the tissue trauma is not worth the results. I find that a regular routine of metrocream and RLT calms the inflammation and that taking histamine and leukotriene blockers helps to curtail the systemic reactions that create the atmosphere for facial inflammation. I recognize that certain foods will cause a flush or P+P and avoid those (as much as possible :wink: ).

I have a cold, but here's a pic from this morning beside one from a year ago. I'm not as pale as I can get but pretty much the average lately.

http://www.anniroc.com/TP/1Year-June2007.jpg

Please note the picture on the left is not a flush, it is shows what a good day was a year ago after a course of doxy and metrocream.

[bentherebefore]

I'm curious, how did you get a stockpile of metrocream? Did you get it from a pharmacy or elsewhere? I would like to do something like that myself.

[Twickle Purple]

I got a 52 refill prescription from my (old) doctor. So I buy 6 - 10 tubes at a time :wink: The Rx runs out after 52 weeks and I want to make sure I get ALL of it! The MD situation here in BC is poor in the outer areas, and I fear going without while I work to find a doctor accepting patients, and who I like.

[betty]

Wow, that's amazing.

Congratulations, you have been through so much, I hope you continue to get even better.

Betty. X

[Twickle Purple]

Thank you for your kind wishes, Betty :flower:

I feel really good about where I am at with this!

[Quench]

Great result TP - thanks for sharing with us.

[Twickle Purple]

My pleasure, Quench :D

Some of my neighbours have commented on my skin tone change, they were too polite to remark when it was at its worst but now freely tell me how bad I looked! :lol:

I still have some bad days, I hope they get farther apart as time passes. I have a really careful approach when I am putting my steroids on and cover my neck and upper chest with a soft pillow case after I put vaseline and metrocream on them so the steroids cannot contaminate the areas. I wear powder-free vinyl gloves when now when I do the rest of me so if I touch my face afterwards I don't accidently put steroids on it. I need to use clobetasol on the tops of my shoulders and the proximity gave me concern but a few months in and it hasn't created any problem with a rosacea flare. So, all's behaving as best as it can.

I joined here a year ago and learned so much, and continue to do so. I don't think I would be as improved as I am if it weren't for this forum and its' members. Thanks folks!

Corinna

[alecashley]

hello tp; was the redness on your face mostly due to large amounts of telangectasias or deeper feeder vessels way under the skin? i only ask because when ever i see great before after pics its usually because vessable vessels are closer to the surface and easier terated by laser, where as someone with deep generalized backround redness has a much more difficult target for the laser to hit. eather way your resulst are an inspiration too all.... ross ny

[Twickle Purple]

Hi Ross,

Both. I had deep redness as well as all over telangiectasia. I still have the all over telangiectasia but it is much less engorged (red), in fact some days I am quite pre-rosacea looking. I thought I had done very well, but now I can really see that I was settling for better, not best. The laser helped, the RLT and metrocream helps, but the base redness has never been so dramatically different as when I added the singulair to my routine.

Cheers,
TP

[Melissa W]

Hi Corinna,

You look great!
I am so happy for you!

I am thinking of trying RLT but I am procrastinating right now because there's (always) so much stuff going on. Starting RLT seems a bit daunting at this time. Plus I would need to do a lot of research/reading before I decide which one would be best for me to start with.

As for your comment on the "law of diminishing returns" I am afraid you're right. With my 1st laser there was dramatic improvement in flushing/burning and the next 2 not so much. I am scheduled for another VBeam on Mon and I'll see how that goes. I am apprehensive as to making my rosacea worse but I am committed to doing this so hopefully that won't be the case.

Anyway, I am so thrilled for you! I hope you continue to do well!

All the best,
Melissa

[Twickle Purple]

Hi Melissa,

Good luck with your VBeam. I hope it works out and you see improvement! I'm not going to do anymore laser, the last one left me nervous and I think that my telangiectasia is alot less noticable now most days. RLT is a very gentle alternative to the destructive lasers, I hope you give it a try and have success with it. It has been very helpful to many.

Best wishes on Monday!
Corinna

[Twickle Purple]

I moved servers and the new forum software does not reshow links so I can't recreate them. So, the posts have no pics. Sorry.

[phlika29]

Are the missing pictures the same ones as on the rosacea support forum?

[Twickle Purple]

The Gemini ones are, I was able to redo the links with the edit feature on the RSGF. On this forum, previously I was able to duplicate link addresses because I could see them when using the quote feature to see the post but it doesn't work that way with this new forum software. I get nothing, like no URL was ever there.

[phlika29]

Okay most of that went way over my head. All I meant was that perhaps you could just post a link to your thread in the rosacea support forumlaugh:

[Twickle Purple]

grin:

A link to a thread that shows the Gemini treatment pics:

Photos shown here (http://rosacea-support.org/forum/viewtopic.php?f=35&t=462)