Eyes Wide Open Now -- Heavy Heart

[drnase]

Eyes Wide Open Now – Heavy Heart

Hello Group,

I have received so much public and private support lately regarding my health, former foundation members and the Rosacea Support Fiasco. I will not go into those subjects as they are still quite volatile and uncovered hidden agendas make my blood boil. While 99.99% of the people support me, they ask me quite frankly, why don’t I just stop, take a rest and pursue things in life that make me happy?

Honestly, I have tried. I had two much better offers at pharmaceutical companies in Diabetes research and a great Medical University Position offer out West. But, I decided to continue with my passion. One will look back on their life when they are retired and ask themselves, “Did I make the right choice?”, “Did I follow the money with a daily secure job……or did I go out on a limb and follow my passion?” Well, I am out on that limb, trying to stay active, recover my health and continue to do what I was trained to do. Research, study, treat and produce medications to treat neurovascular disorders. That is rosacea’s elusive heart.

This last year has been quite a learning experience. A very bad learning experience. Oddly enough I am not motivated by the heavy favorite, I am motivated by the long shot. I have learned quite abruptly this year that we, rosacea sufferers have been mostly left up to our own fates. While this opened my eyes, it did not detract from my passion, it only fueled it. I learned what physicians really think about rosacea, I learned what pharmaceutical companies thought about investing in more rosacea research and I found out the complete apathy towards our disorder and advancements.

I will just highlight some things that kept me hanging in there when I really should have just let go. Before, my main motivation was to (1) find better treatments for those 20% to 30% that were treatment resistant and (2) allow rosacea sufferers to recover their lives and not have to worry every day about all the possible triggers. Now my eyes are wide open and I am now twice as motivated because no one else is going to help us. Not in the near future. All our near future treatments will come from medications and treatments indicated for other inflammatory skin disorders. We have no rosacea experts in the field. We have rosacea experts sitting back and writing their 20th review of the subject, just regurgitating the same old gobbly gook. We don’t have a single hungry dermatologist out there that has ever taken Dr. Wilkin’s place once he went to work for the FDA ten years ago. While it is not always appropriate to name names, our current self appointed Dermatology Rosacea Expert is Dr. Mark Dahl. A very nice gentleman and physician who has rosacea. Ironically, he has been the worst thing that has ever happened to rosacea. I say this as the honest truth. The most referenced rosacea article, the biggest article written in the past 10 years that all dermatologists and pharmaceutical companies know about is one where he basically states that rosacea is easily treatable with topical metronidazole and actually maintains remission in rosacea sufferers. I had no idea how big of an impact this article had on physicians until I headed up the Medical Advisory Committee of the RRF and interviewed many. Most physicians put rosacea in the “cured” category because of this paper. I contacted 17 pharmaceutical companies as MAC Chair to investigate whether they were involved in rosacea research and also to ask if they could donate to our cause. All 17 had no plans at all for rosacea and most quoted the Dr. Dahl cure article. My eyes were totally opened by now. Doctors and pharmaceutical companies had given up on rosacea. The last piece of disheartening news involved the response that I got when I asked many of my physician friends to donate to the RRF. I asked 67 (crossed off in my notebook to keep track). Most of them via phone and the rest via email. These are physicians who I had known for many years…… physicians who had several houses, planes, extravagant lives. 67 physicians. I naively expected most of them to donate at least $5,000 each. A drop in the bucket. I expected some might just donate $2,500 or at the least $1,000. 67 physicians who I considered friends and who I had collaborated with for many years. 2 physicians donated. 65 donated nothing. It gets worse. The two that did donate sent in a check for $250 and one for $50. That was disgraceful. The physician who donated $250 also has a huge skincare company and could have donated $100,000 without batting an eye. I actually emailed him back and told him that I would be sending his donation back to him because I did not want to take the food off of his table! Eye opening……..heavy heart.

Back to Dr. Dahl and the major publication that literally stopped pharmaceutical companies from following up on better treatments and has most dermatologists convinced that if you don’t respond to topical and oral antibiotics then you are clearly a rare case……… forget even mentioning the trigger part. Dr. Dahl’s article was very misleading and was sponsored by Galderma, the makers of metronidazole gel. Medical articles should include benefits and limitations of topical metronidazole so that general physicians and rosacea sufferers know what to reasonably expect from treatment


In a very recent medical article in the Archives of Dermatology (1998), Dr. Mark Dahl and Colleagues boldly titled their study, “Topical Metronidazole Maintains Remissions of Rosacea”. While this study was well designed and performed by top-notch dermatologists, I humbly suggest that the article’s title, abstract, results and basic conclusions are dangerously misleading – both to general physicians and rosacea sufferers. The title, abstract, and general conclusions of this medical article are written in such a way that it honestly looks like we have found a near-cure for rosacea in topical metronidazole. This just isn’t the case. Some of the patients did not improve at all, a significant percentage relapsed while on topical metronidazole, many still had papules and pustules throughout treatment, others showed no improvement or only minimal improvement in facial redness;……. and facial telangiectasia, facial flushing, and trigger avoidance where not even evaluated. More specifically:

•10% of the rosacea sufferers did not improve enough in the beginning stages of the study to be included. They dropped out of the study.

•23% of the sufferers relapsed completely while on topical metronidazole.

•47% of the sufferers still had papules and pustules at the end of the study.

•26% did not show any improvement in facial redness, while many others only demonstrated mild improvement.

•Facial flushing, telangiectasia, swelling, and burning sensations were not evaluated at all.

•Most importantly, avoidance of flushing triggers (a very important part of rosacea treatment), was not even addressed in this study. These medical researchers only included a half sentence on this very important topic, stating, “.....others frequently stay well by avoiding trigger factors.....”.

So, “Topical Metronidazole Maintains Remissions of Rosacea” may not be the most accurate description of the medical findings. A more accurate title might be, “Topical Metronidazole with Avoidance of All Flushing Triggers Reduces Superficial Symptoms in Some Rosacea Sufferers”.

In a more recent article in the Archives of Dermatology (1999), Dr. Wilkin also voices his concerns over the conclusions of this medical article. In fact, he states, “Limiting one’s clinical regimen literally to the treatment evaluated by these medical investigators could shortchange patients with rosacea, and be hazardous to those with ocular involvement.”

This single major journal article has turned off many pharmaceutical companies and is the gospel word to dermatologists. If you don’t respond to standard treatments or complain of triggers, than it is either psychological or you are a one in a million case. This is what I found out and this is why nothing is truly happening in rosacea.

The last point is that some are getting very excited by some studies being supported by the NRS. These studies are a good start, but most studies are one study by one group. It takes dozens of studies by multiple labs to get anywhere. On the pace they are on it could be another decade before they get some real answers. More disheartening than that is the studies funded don’t pass peer review – only two studies have been published in five years, the rest where rejected for multiple flaws.

So, why do I stay around. The underdog thing. Never forgetting my five years in an air conditioned apartment with the blinds pulled down. And, who else is out there to help us? We can actually get treatments quite soon, but they wont come from rosacea researchers or Dr. Dahl. They will come from top notch dermatologists studying the neural and vascular problems in other inflammatory disorders. This is where I can help them piece the puzzle together and incentivize them by indicating that this would also treat a separate disorder with millions of sufferers.

You know in 20 to 30 years of studying this disorder, no one has ever detailed the true burning and pain sensations associated with rosacea. It took little old me to send a small shock wave through the dermatology community by publishing two articles in the Dermatology Times detailing a fifth Subtype of rosacea – Neuropathic Rosacea, which along with vascular rosacea are medical necessities to treat. This is what I live for. This not only opens their eyes up, but it changes insurance coverage forever by just quoting and referencing those articles. Rosacea does not need anymore review articles, it does not need any more ‘yes’ men, it needs a little stirring. That keeps me in this game.

Eyes are Now Wide Open -- but still Heavy Heart

Regards,

[Andy]

I don't know what to say really, besides this is something I've suspected for a long time, that we're more or less left "alone" in this, and if we don't help eachother, no one else will. I think you have to have experienced rosacea first hand to truly understand the nature of this condition. And I think I speak for everyone when I say thank god for having Dr Nase with us, your work means the world to us and we stand behind you 100%, no matter what. You have already done more for us than all others have, combined.

Andy

[G24]

I'm sure we are all appreciating your superb work Drnase. Keep it up. :)

[Mermaid]

Hello Geoffrey,

Thank you for being such a passionate and loving person to us all. I personally would love to do more for you because you give so much of yourself to all of us. I feel so inadequate that you spoil us like you do with cutting edge information and advice and yet I am not able to find a way to thank you except with words of gratitude.

Even in your bleakest moments you always put us first which is extraordinary considering what you are going through.

I thought we had lost you there for a while and it left me feeling so empty and immensely sad.

In the words of Eminem 'but no matter how many fish in the sea, it would be so empty without me'.

I think we all agree. Thank you.

Mermaid

[Max]

i always wonder, why on earth there's even a need to have articles telling dermatologists that topical metronidazol isn't the cure for most.

don't they see? don't they learn?

most of those they diagnose with rosacea will get a prescription for metro, a handshake, some best wishes and are told to come back later.

so: don't they come back? don't they tell them "hey man, didn't do much for me, i still flush like hell".

what's preventing dermatologists from facing the truth. maybe they just don't believe us?

but on the other side, how many of us had at least once being described oral antibiotics? most propably because metro doesn't do miracles.

[Kelli]

That really explains a lot... :cry:

Never felt more alone before...

Let me know what I can do to help.

[Ghost]

[quote="Max"]i always wonder, why on earth there's even a need to have articles telling dermatologists that topical metronidazol isn't the cure for most.

don't they see? don't they learn?



Maybe Dr Nase can tell us whether Derms are required to attend a special class in how to not see the obvious. I'm glad he skipped that class.

[Max]

Maybe Dr Nase can tell us whether Derms are required to attend a special class in how to not see the obvious. I'm glad he skipped that class.

LOL, that was a good one:)

I wonder how they cannot appreciate the impact rosacea can have pain-wise when many suffers go on to develop occular rosacea. I know myself that when the pain in my face is bad my eyes look absolutely terrible! This is just one aspect i know but its so obvious that it is not just a case of having a red face or having unsightly lesions, it is so much more than that!

Grrr to all dermatologists, worst moment with a white coat was seeing the derm at my nearest hospital. NEVER AGAIN.

Thanks Dr Nase for the post, even when its a bleak prognosis i'd rather know about it. Its the 'go away and learn to live with, its just you' approach that makes me want to jump off of tall buildings. i'll be sure to informa the next person that has a chronic problem such as migraines, that they really should stop whinging and except its just them, and if life is a trigger then just stop living!! simple stuff huh :evil:

[Ghost]

I liked the derm who said to me, "It's part of you, just like your blue eyes."

Nice, what?

Fortunately, that's all a thing of the past [it was a long past].

[Kelli]

I had a Dr. tell me one second that I really have good skin.

Then told me that my body would eventually be covered in red bumps - veins coming to the surface of my skin. (Can't remember what they're called.)

:evil:

[prryjones]

Dr. Nase,
You are THE MAN.
Perry
ps I want to send Dr. Dahl a curt email....

[googoo]

Apparently Dr. Dahl has a mild case of rosacea. I wish I could give him mine for a day! Dr. Nase, I want my derm to read your post. I will email him a copy of your post. GooGoo

[patrice]

Go Dr Nase and kick ass! We are with you all the way!
Patrice

[recluse]

Hey Dr. Nase,

Thank you brother. I really don't know what more to say. I wish that you could know how truly thankfull i am towards all that you have done and will continue to do.

We all appreciate both your honesty and tenacity.

Thanks again. You are a great person.

[drnase]

I would say that many doctors are totally ignorant of this fact because they assume that the patient is cured because he does not come back.........when in fact, the wise patient has quickly moved on to another doctor in hopes of getting a better ear and treatments. I know that the 60 plus doctors that I saw, probably 50 I only saw once and received a script, but could tell they were in the dark ages. So, I moveed on. These 50 or so doctors probably thought they cured me.

The ones that upset me are the arrogant ones at the best clinics because most are set in their ways and will belittle you with their tone and verbage. Now a few have found good doctors at the MAYO clinics, but they were not derms, they were neurologists or neuropathologists or vascular specialists. More open to learning and listening.

[tryingtogetoverit]

I felt so happy reading this post, but also angry and frustrated.

I feel so glad that you are ''campaigning'' for us, Dr. Nase. It seems if you didn't, there wouldn't be many others doing it.

I'm so greatful. Just in my few days on the forum, I've learned so much and have gotten so much support that it's unbelievable. I learned that my reaction in fluorescent lighting is real, not imagined or caused by heat, etc.
I'm in the process of finding a pair of nice frames and hopefully it makes going to malls (and other places) a lot easier.

I really appreciate every ounce you do for us.
Orion

[prryjones]

Hi all,
This brings up an interesting point. I posted last week concerning a clinical trial that was being done in the Atlanta, Ga., area. Of course, I had fantasies of some new drug being tested...but alas...only a generic brand of Metrolotion.
I was impressed that the recruiter actually WAS aware that metronidazole was beneficial only for the acneform type rosacea, not the neuropathic type (hey...word IS spreading folks). So, after I sighed and told her that metrogel was worthess for my type case (she agreed), I forgot about it.
Now. The question arises...would I possibly serve some good by enrolling in the trial, simply to serve as negative outcome? I mean...I would love to be a part of the study that proves metronidazole does not work for the majority of rosacea cases. Wouldn't it be great if 100 percent of enrollees had type 1 and not one positive outcome?
Hmm......with my luck...I'd be given placebo....
Comments always welcome,
Perry

[rosaceafree]

Good question, Perry!

And as always, Dr. Nase, my humble thanks.

:oops: This emoticon looks like me after a trigger! :wink:

[Arizona State]

Wow I am overwhelmed by your E mail.
You are a very dedicated and one of a kind person.
I am fortunate that I did not have Rosacea until 53 years old. I have to beat this and I will. I will do all I can to help others also.
Its super that you are so thoughtful and persistant but you do need to take care of yourself.
Take care
Keith Hahn :D

[clsykes00]

Dr Nase,

First, a book/movie should be written about you (would be inspirational)!!!

Second, I agree with you and feel your frustration. Rosacea research seems to be suffering a "marketing" problem, among other things. About a month ago, I wrote a brief thought on what I thought were some of the road blocks to finding better solutions. Here is what I wrote (opinions welcome):

As an investor in companies (work in venture capital), I often look at the economic/monetary reasons for barriers preventing the advent of new technologies, etc. Here are some of the reasons that technology to help rosaceas does not advance quickly:

- Poor awareness among potential consumers
This applies to both the affliction itself and most notably the
potential treatment options (lasers vs. metrolotion as an obvious example). We might help ourselves by thinking of "out of the box" methods to spread the word on this affliction and the treatment options.

- High out of pocket expenses prevent consumers from going in for procedures.
This discourages technology companies from dumping alot of R&D capital into developing newer lasers for example since the market of potential paying customers is low. Insurance companies, by not covering these procedures, greatly limit the market potential of these products since only a small cross section of suffers can afford such treatments. Insurance companies need to understand that this condition is not cosmetic, but life altering. Until they acknowledge this, rosacea technology will continue at a slower pace than otherwise.

- Several products with different features and applications confuse the consumer
Dr. Nase and others have been enormously helpful to all of us in this area (that is, have provided us the real scoop on finding treatment), but the dreaded dermatologist, the first path chosen by many of the unknowing (like me not too long ago), are just as confused as the patient. This leads to mass misunderstandings as to the proper treatment options.

- Reported cases of mistake and failure
Everyone fears being the guinea pig in an experiment gone bad. Stories, like many heard on this board, prevent mass market appeal.

The first three items on this list are things that all of us can
potentially influence.

1) creating more awareness most likely through some creative marketing
2) battling insurance companies to cover such expenses (don't know of successful cases related to other ailments, but I am sure roadmaps have been paved before!)
3) informing those that do have the affliction about the proper
protocols (note, this may start with creating more awareness among the dermatology community)

I often times lay around on my couch (with the blinds shut and the air conditioner at 68F of course) thinking of "gorilla marketing" tactics to spread the true word about rosacea. An example of a great marketing scheme for an afflication is the Armstrong band and cancer. We have a potentially killer platform given that the color red is associated with rosacea. A book/movie about Dr. Nase could shed light on the condition. A public figure like Clinton who is brave enough to speak out could shed light on the structural resistances related to rosacea. Any ideas? Any thoughts on my comments?

Best,
Trey

I think the problem Trey is its just not a 'pretty illness'. People don't want to admit to having it, there doesn't seem to be a clear diagnosis to tell people they have it and when you can't hide from it anymore you end up hiding yrself away instead, so its hardly a case of 'im red, half-dead and proud of it'.

I'd much rather have a condition people empathised with, instead of something they consider a cosmetic irritation and nothing else.

[Kelli]

I think Trey is onto something with the "Poorly Marketed" idea. I'm going to think some more on what he said here and see if I can come upw with anything.

I see what you mean, Sally_ann... but that's the downfall of being a rosacean - you want to hide, and because you've hidden for so long, there's nothing to help you. (I say you, not meaning you, just "you" in general.)

[Bob Bear]

Dr Nase,

You are a top fella, I didnt think you'd bunk on us!

To be quite honest the bulk of your initial post doesnt come as much suprise to me. I mean, we are a large uncatered for market, and if research was being conducted Im sure someone would be pedalling it.

Come to think of it, i still find it unfathomable that nothing is being developed for us. I come from a buisness background education wise, and i spent years having it drilled into me about how to develop new products, penerate markets etc. Well we are a huge market, which at present is completely empty! If you need any extra incentive to stick with the cause Dr Nase, just imagine the share of the 'rosacea treatments' market you could command being the first to patent an effective topical!

Does anyone even have an idea of how many rosacea sufferers are kicking around globally? What is it, 13 million in the US alone? Thats a very big pie!

I think the first port of call should be to kick Dahl squarely in the knackers :wink:

Dr Nase, hope the recovery is progressing. Its good to see you posting with such focus and enthusiasm again!

[Ghost]

I think the problem Trey is its just not a 'pretty illness'. People don't want to admit to having it, there doesn't seem to be a clear diagnosis to tell people they have it and when you can't hide from it anymore you end up hiding yrself away instead, so its hardly a case of 'im red, half-dead and proud of it'.

I'd much rather have a condition people empathised with, instead of something they consider a cosmetic irritation and nothing else.

You got it, Sally Ann, it's not a pretty illness. Nor is it a heroic one, even though you have to have a lot of guts to survive it. I felt like half a person going through school and early career because of how I looked (and how I was treated as a result of it). But I don't have to go into detail for anyone here :-)

Perhaps the closest theatrical role models (since we got onto this talking about the Dr Nase movie) we have are the eponymous Elephant Man, the guy in The Mask (that Cher movie), Mel Gibson in The Face (wasn't that the title?); and in theatre -- hey, the Wicked Witch of the West currently on Broadway in Wicked, and the eponymous Phantom of the Opera.

[prryjones]

Hi all,
What I'm hoping is that once the anti-redness product from SansRosa (or however you spell it) reaches the market, many, who were formerly ignorant of their rosacea, will suddenly become aware and then the market booms!
So maybe the release in the next few years (fingers crossed) of the alpha blocker will cause an awareness of rosacea like nothing before, SansRosa will make a mint, and other companies will jump on the anti-red bandwagon. Nothing motivates like the power of the profit.
Regards,
Perry

[Bob Bear]

Indeed, well said! Maybe it will take a product like Sansrosa to give the pharms a proverbial kick up the arse. Lets hope that this is the case.

And lets not forget the research planned by our own good Dr Nase. Im still rooting for this Kinase treatment, sounds like the most promising research to date.

[clsykes00]

I really hope that we don't have to rely on one company to market our problem. And, I really hope that we don't hinder our efforts because we have to hide ourselves from the world because we are worried about what other's think of us.

I am no expert in the bio/pharma arena, but from what I understand in general, the time to market for a new treatment like Sansrosa will take years to go through different phases (phase I through phase III and sometimes phase IV). This assumes that Sansrosa's product clears all phases. Then by no means, are good "inventors" necessarily good marketers. I know some of the early investors in Sansrosa. They will help with the marketing. But this task is much too daunting to leave up to some small development company. We need a "14 million rosacean march!!!" Im more than facetious, but you get the idea of calling attention to our plight.

Also, I too struggle with my self conscious. I don't like people looking at me. I'm not as interested in going out with my face like this. But, our faces also could represent good marketing tools. To some extent, we have to overcome our worst fears and fight for what is truly important to us. Without ourselves as our own advocates, we can really rely on no one at this point!!!

We have an opportunity to help market this affliction!!! But, this effort will take a mixture of creativity, strong will, and maybe a public representative that can "stand" for this afflication.

Of course, this is my humble opinion.

Best,
Trey

[Bob Bear]

I think you maybe on the money here. How can anyone come to our rescue when they dont even know we exsist?

You always here people moaning about dry skin, spots, greasy hair etc. But Iv never heard anyone talking about facial flusing and rosacea, even people that clearly have it. And then there must be so many females who cover any trace with layers of makeup (probably enough blokes too). Perhaps we are indeed our own worst enemies?

But on a more constructive note, is there really anything that ground level people can do? Im sure if I go out flushed every day I'll achieve little more that a few sketchy looks. :?

[Warren]

I think you maybe on the money here. How can anyone come to our rescue when they dont even know we exsist?

You always here people moaning about dry skin, spots, greasy hair etc. But Iv never heard anyone talking about facial flusing and rosacea, even people that clearly have it. And then there must be so many females who cover any trace with layers of makeup (probably enough blokes too). Perhaps we are indeed our own worst enemies?

But on a more constructive note, is there really anything that ground level people can do? Im sure if I go out flushed every day I'll achieve little more that a few sketchy looks. :?

Word of mouth is never going to work for getting people to know what rosacea is and how it affects us. The best idea that I have had is if we can get a magazine article or two printed in a womans magazine or something similar with:

what rosacea
3 stories of people with rosacea
where people can go to to get more information.

[Bob Bear]

Sounds like a plan Warren. Any ideas on how to get the ball rolling? Im sure with all the info on the yahoo board we could compile a decent article. I guess it would be getting our article printed that'd be the issue. We need to find a rosacean on the inside to help us a get a foot in the door!

Wow, this could end up like Fight Club... either that or the Free Masons haha!

[grooney]

Wow! What more can I say, Dr. Nase...thank you and God Bless.

You are in my prayers,
Gina

[drnase]

I tried Redbook a couple years ago and most articles you have to pay for, but some will be published for free. If someone could follow up on Redbook I think it is one of the top selling female magazines.

[karen_breeze]

Hi Warren, In one of your recent posts you mentioned about trying to get a woman's magazine to write an article about rosacea. I use the Calmin skin care, I wrote a small testimonial agreeing that their products were good for sensitive/rosacea skin(of course not for everyone, but ok for me). KCN Skincare got back to me asking for my story for a magazine called Woman, they didn't use my story but a different mag was interested(I don't know if they ever published it). I found it quite hard telling my story of how and when rosacea started, very personal and I wouldn't do it again. Getting to the point, I'm sure if you contacted KCN Skincare they maybe able to help with finding a magazine (or the magazine I gave my storyto) that would write an article about rosacea. The lady that sent me the email questionaire was very caring and interested in my story. I'm from the UK and it was for a UK magazine. karen

[lwells]

Dr. Nase...you would not believe the warmth that returned to my heart with the realization that you were staying on board to help battle this disorder. I was ecstatic to read that a new forum was in place and you would be participating!

It was with a heavy heart that I read your post on the support group. I was deeply saddened to hear of the troubles in your life (knowing the joy your efforts have brought back to mine) and to learn of your departure from rosacea research. You are a true crusader and I knew that your departure would take the wind out of the sail of improved rosacea research. It's great to know that your passion has returned stronger than ever!

Your post certainly confirms what I have long suspected. The ignorance of many derms in relation to the treatment of rosacea is astounding to me. I have experienced it myself (as I'm sure most of us have). I will never understand the level of arrogance and condescension I've been subjected to upon the mere suggestion of a treatment that is outside the "standard". I honestly wanted to kick that derm's ass straight back out the door he came in through! It's sad to think that an educated and "caring" group of professionals are willing to be so complacent in learning about and treating this disorder.

Thankfully I've found a private clinic and derm that are taking an active role in the treatment of rosacea. I haven't actually seen the derm (his medical practice is closed for new patients), but I've had many discussions with his RN at the private clinic and provided them with information from the support group, Dr. Nase's book and articles. We have also discussed ways of educating the public, GP's and other derms about rosacea and new treatment courses. There is a large portion of rosacea sufferers where I live that are not receiving any treatment at all or improper treatment from their GP's due to misdiagnosis. Hopefully they will be successful in getting the word out.

Leslie

I will never understand the level of arrogance and condescension I've been subjected to upon the mere suggestion of a treatment that is outside the "standard"

Leslie you described so eloquently just what i was trying to express in my post earlier. This level of arrogance and condescension was so gobsmackingly pronounced it was an effort to hold back the tears until i had left the room.

Skin conditions contribute to feelings of worthlessness and low self-esteem so why dermatologists feel they should add to this load by talking to their patients like animals i really don't know.

[1monkey2]

Dr. Nase,

Thank You-for your compassion, hard work and dedication. There are so few in the medical field like you.

I work for a physician in the Radiation Therapy field (I'm a Radiation Therapist) who has your compassion and drive (for his cancer patients) so now I know 2 great Doctors in this world.

Thank you again,

Sharon

[irishgenes]

Redbook may have been top-selling in the 1960's, but it is #42 on the 2003 top-sellers list. Woman's World is #14 (right behind Newsweek, which is #11). Not to be confused with Woman's Day, this periodical is right there at the check-out line of grocery stores all over the country. Being a weekly, they have need for a lot of material and run a health page where I have gotten a lot of cutting-edge medical news. I remember that they were among the first to come out with information about Prozac & Imitrex, before the drugs were approved. They don't tend to run long articles, but might accept short "questions and answers", etc.

[irishgenes]

A public figure like Clinton who is brave enough to speak out could shed light on the structural resistances related to rosacea. Any ideas? Any thoughts on my comments?
Trey

Uh, I don't think Clinton would speak out on rosacea. Paula Jones said of their 'encounter': ""I will never forget the look on his face. His face was just red, beet red."

[drnase]

IrishGenes,

You made me feel so old. I feel outdated. I am going to immediately cancel my subscriptiion to redbook......... and Mad Magazine. :shock:

[Kelli]

I have no clue if it would be good for rosacea, because I haven't used it,but I do know that Dove is doing a huge campaign right now for women. There might be something to jump on with that, if the soap is good for rosacea skin.

[Bob Bear]

IrishGenes,

You made me feel so old. I feel outdated. I am going to immediately cancel my subscriptiion to redbook......... and Mad Magazine. :shock:


:lol:

[coldbliss]

i always wonder, why on earth there's even a need to have articles telling dermatologists that topical metronidazol isn't the cure for most.

don't they see? don't they learn?

most of those they diagnose with rosacea will get a prescription for metro, a handshake, some best wishes and are told to come back later.

so: don't they come back? don't they tell them "hey man, didn't do much for me, i still flush like hell".

what's preventing dermatologists from facing the truth. maybe they just don't believe us?

but on the other side, how many of us had at least once being described oral antibiotics? most propably because metro doesn't do miracles.

Max,

I can tell you from experience that dermatologists are frustrated with rosacea. Most of their patients do tell them that metro and antibiotics are not effective enough. The derms prescribe stronger antibiotics or even anti-hypertensive meds. But most derms are in the dark about treating rosacea effectively.

I think most derms realize that the Dahl article was a complete sham because their patients are getting ZERO results with metros. But they don't have information on the latest treatments of rosacea. I blame the ADA, the pharmaceutical giants and medicine colleges for this ignorance.

Some understanding dermatologists will accept suggestions from patients based on information from the "Beating Rosacea" book by Dr. Nase. They have an intellectual curiosity streak in them; they want to learn from their patients. Other derms will cast aside any suggestions from patients and offer the "You just have to live with it and avoid the triggers" line. I certainly hope that more dermatologists have the former mindset as opposed to the latter.

:arrow:

[KHM]

I have actaully had a long term Derm yell at me (in front of a med student no less) because I would not stay on Doxy full time.

well - I was allergic to it, and the rash it gave me on the face and stomach in no way helped the P&Ps on my face.

Then there was the one I told I could not tolerate E-mycin who promptly wrote me a perscription for it. I was having my second worst flare ever, but she had alloted 15 minutes for an initial exam . . . .

Yup- pretty discouraging. I have a pretty good derm now - he tries to listen and taked info I bring in, but how discouraging that I am educating the man. My major was business and IT.

[pjbear57]

You need to get on "Oprah". She can really get things moving! :D

[Bob Bear]

That would be funny, the Dr Nase / Dr Phil double bill! Helping you solve embarrassing roscea flares during marital break ups.

Im offically claiming the movies rights... :lol:

[cantfakereality]

I love you Doc Nase.

(Not in a homosexual way, just for the record :wink: )

[smudge]

I have been to 4 specialists in the past 2 years. My skin is still horrible and my nose is still growing! After doing my own research, I finally convinced my primary physician to put me on accutane. He wrote the script but wanted to send me to a top specialist to closely gauge my progress.

The new dr. immediately took me OFF accutane which was the ONLY thing that had helped me. His assistant told me its "just too costly for the insurance company." The lesions & pain are back now in full force... but the "expert" prescribed me METRONIDAZOLE to rub on my nose, 3 months later, surprise, surprise... its not working. The Dr. told me to be thankful that i had a tiny cute nose to begin with because its "Really not THAT bad!"

I am in new york and CANNOT find adequate treatment!!!

Please keep up with your research.

[Jordan]

Smudge, I haven't seen any doctors in about a year and I order every prescription I want/need on the internet. Google is your friend. :D If accutane is helping you, get it yourself! Bypass the middle man. I never see a doctor and ask about prescription drugs. I research the drug on the internet and ask around and if i think I would like to try it out I go for it.

Jordan

remember: If you don't help yourself no one will.

[zahn2000]

Dr Nase I feel I cant say nothing more but thank you.

A pure Gent and a man who can look back on his life and say he made a difference, and not many can do that, certainly not in the dermotology field. Your efforts will stay in the hearts of many Rosacea sufferers many years from now.

All the blessings in the world, Zahn

[smudge]

jordan i can really get accutane over the internet?

-liz

[irishgenes]

I never see a doctor and ask about prescription drugs. I research the drug on the internet and ask around and if i think I would like to try it out I go for it.
I'm not sure if even the internet pharmacies that mail out drugs without a prescription sell Accutane because of the huge liability problem if someone gets pregnant and sues for birth defects. And I would worry that if a pharmacy engages in shady no-prescription drug shipments, they would just as soon sell you a counterfeit.

[Buster]

I think it is strange your doc said it was too expensive for the insurance agency. Do they pay for your accutane? Can`t you just pay yourself?
It sounds like this doc does not know what he is talking about.

I see you are a runner. Me too. Nothing like a good run (:

[Callien]

I get my accutane from the Internet. It was a little scary at first but what can you do? I've heard doctors don't like to prescribe it to women because of the pregnancy scare. But I guess it's difficult for men to get it as well because someone on accutane killed themselves due to depression. 10 mgs is such a low amount but I guess there's lots of paperwork involved, and bloodwork and so on. It's too bad we have to become so creative in trying to help ourselves get better but until the medical community catches up with what is really going on with us I guess it's the best we can do.

PS I love to run also but it's the one thing I've had to give up because nothing induces a full on flush for me as much as running does. You're lucky if you still can do it.

[arcticlobo]

I get my accutane from the Internet. It was a little scary at first but what can you do? I've heard doctors don't like to prescribe it to women because of the pregnancy scare. But I guess it's difficult for men to get it as well because someone on accutane killed themselves due to depression. 10 mgs is such a low amount but I guess there's lots of paperwork involved, and bloodwork and so on. It's too bad we have to become so creative in trying to help ourselves get better but until the medical community catches up with what is really going on with us I guess it's the best we can do.

PS I love to run also but it's the one thing I've had to give up because nothing induces a full on flush for me as much as running does. You're lucky if you still can do it.

Agreed. If you can still run ,you are lucky. I think the worst part about having rosacea is having to give up exersice. I mean, of all the non-life threatening conditions out there, how many of them force you to stop physical exersice? I would trade rosacea for any condition where exersice would be beneficial in recovery.

[irishgenes]

Doctors have to take a special course just to prescribe Accutane. They are now given yellow stickers to put on a prescription which has their Drug Eforcement Agency number on it. It tells the pharmacist he can only fill it within 7 days of qualification date, give only a 30-day supply, and no refills allowed. (However, I once got a 90-day supply with that sticker on there.) They are forced to do pregnancy tests monthly on every woman, even if she is over 50! Are these online places you order from overseas? I once ordered something from overseas and had it nabbed by Customs--lost a lot of money, as they never gave it back.

[Jordan]

http://www.mastersmarketing.com/price_i_l.htm#i

thats where I have ordered my 10mg accutane more than once with no problems whatsoever. I live in Idaho, so I'm under the same restrictions as anyone else in the U.S. That link is a direct page to the 'I' listing of drugs they sell. Find 'isotretinoin' and it will give you more details there. Then fill out the order form and send it in and you are on your way. And yes when I received the accutane it was brand name Roche Roaccutane and yes it did help my rosacea.

[irishgenes]

Thanks for that link. Looks like it is an overseas place. I have ordered from Canada Drugs before, and even with a prescription & importing only a 90-day supply for personal use, they admit on the website that the practice of importing drugs from outside the US is not within FDA regulations any more. The FDA seizes a certain number of shipments, and if they seize yours, you are out of luck. Accutane importation is now under an alert where they are making a special effort to seize all shipments.
http://www.fda.gov/bbs/topics/NEWS/2002/NEW00856.html

The FDA never wanted to allow any prescription drugs to be imported into the US at all, but the AIDS patients made such a fuss about it that they had to give in. Now the US pharmaceutical companies are making a bigger fuss about US citizens getting cheap drugs imported and cutting down on the money they can make from overcharged captive US consumers. So right now, the FDA is listening to the drug companies and making accusations that the drugs are fakes or unsafe, which in the case of Canadian pharmacies, is very unlikely. Here is a link to their current "Regulatory Actions": http://www.fda.gov/importeddrugs/

[fut]

Thanks for that link. Looks like it is an overseas place. I have ordered from Canada Drugs before, and even with a prescription & importing only a 90-day supply for personal use, they admit on the website that the practice of importing drugs from outside the US is not within FDA regulations any more. The FDA seizes a certain number of shipments, and if they seize yours, you are out of luck. Accutane importation is now under an alert where they are making a special effort to seize all shipments.
http://www.fda.gov/bbs/topics/NEWS/2002/NEW00856.html

The FDA never wanted to allow any prescription drugs to be imported into the US at all, but the AIDS patients made such a fuss about it that they had to give in. Now the US pharmaceutical companies are making a bigger fuss about US citizens getting cheap drugs imported and cutting down on the money they can make from overcharged captive US consumers. So right now, the FDA is listening to the drug companies and making accusations that the drugs are fakes or unsafe, which in the case of Canadian pharmacies, is very unlikely. Here is a link to their current "Regulatory Actions": http://www.fda.gov/importeddrugs/


Thanks for that info. Just to let people know, I ordered my accutane off of drugdelivery.ca and had a very good experience. I recommend them.

I'm off to order another 3 months supply just incase!

[irishgenes]

I just got around to checking the price of Roaccutane from Masters Marketing, which is in the UK. $35 for 30 10 mg. caps! That is a great price. It beats $94.99, which is drugdelivery.ca's price, fut. You might want to consider ordering there. I remember now that I ordered something from Masters many years ago & had no problem with the order.
I just checked Walgreen's price for Accutane. $328. What a rip-off!