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banshee
10th February 2006, 11:51 PM
Hi all-

I'm very interested in this treatment & hearing ppl's experiences with it. I was bummed to see the other thread get locked so if we could please keep this one to discussion of the tx as I think it's an important option to be open to. Thanks :)

Having said that, I'd like to read these case studies of the drug being used in rosacea so I can make an informed decision. Dr.Nase I'd greatly appreciate it if you could direct folks to journals containing these cases.

I spoke with my derm & she was agreeable to try it....She said it's used not only Lupus, but photosensitivity. We discussed the potential mechanisms of action & she informed me it is anti-oxidant & anti-inflammatory. I speculated because it is an anti-malarial which typically presents fever, could it also have some effect on the thermo-neutral zone like clonidine does. She didn't know.

Here's a couple q's I had based on those comments:

1. If its mechanism of action is only anti-inflammatory/anti-oxidant, then does it in essence only do what antibiotics do & "mask" the symptoms while not addressing the defective vessels? Requiring you have to take it again in the future.

Obviously interrupting the inflammatory cycle is very positive and in doing so to the point of reverting the condition, that would allow one's own body to better handle & recover from flare ups or subclinical damage. None the less the vessel is still dysfunctional.

2. Since ocular rosacea is analogous to facial, does this have the potential to reverse OR as well? Dryness et al.

3. Does this drug have a half life in one's system like Accutane?

4. Is this more effective or contraindicated w/ppl of specific subtypes...The case Dr.Nase posted said "severe" rosacea with burning but didn't mention flushing. I know it was stated this is being prescribed in flushing, but since severe can be subjective, does this have potential to assist even ppl with the nastiest of flushing? I.e. folks who do not have permanent redness but get intense full face/ears flash flushes.

I also think it would be prudent to examine why/how ppl with Lupus get the butterfly rash aside from the fact their vessels are inflamed.

I know there have been personal issues between Dr.Nase & others but if he can post or can have someone post for him-myself & others I'm sure would be open to his input.

sorry to go but I hope folks can used this thread to constructively discuss & speculate. :)

redhotoz
11th February 2006, 03:26 AM
Hi all-

I'm very interested in this treatment & hearing ppl's experiences with it. I was bummed to see the other thread get locked so if we could please keep this one to discussion of the tx as I think it's an important option to be open to. Thanks :)

Having said that, I'd like to read these case studies of the drug being used in rosacea so I can make an informed decision. Dr.Nase I'd greatly appreciate it if you could direct folks to journals containing these cases.

I spoke with my derm & she was agreeable to try it....She said it's used not only Lupus, but photosensitivity. We discussed the potential mechanisms of action & she informed me it is anti-oxidant & anti-inflammatory. I speculated because it is an anti-malarial which typically presents fever, could it also have some effect on the thermo-neutral zone like clonidine does. She didn't know.

Here's a couple q's I had based on those comments:

1. If its mechanism of action is only anti-inflammatory/anti-oxidant, then does it in essence only do what antibiotics do & "mask" the symptoms while not addressing the defective vessels? Requiring you have to take it again in the future.

Obviously interrupting the inflammatory cycle is very positive and in doing so to the point of reverting the condition, that would allow one's own body to better handle & recover from flare ups or subclinical damage. None the less the vessel is still dysfunctional.

2. Since ocular rosacea is analogous to facial, does this have the potential to reverse OR as well? Dryness et al.

3. Does this drug have a half life in one's system like Accutane?

4. Is this more effective or contraindicated w/ppl of specific subtypes...The case Dr.Nase posted said "severe" rosacea with burning but didn't mention flushing. I know it was stated this is being prescribed in flushing, but since severe can be subjective, does this have potential to assist even ppl with the nastiest of flushing? I.e. folks who do not have permanent redness but get intense full face/ears flash flushes.

I also think it would be prudent to examine why/how ppl with Lupus get the butterfly rash aside from the fact their vessels are inflamed.

I know there have been personal issues between Dr.Nase & others but if he can post or can have someone post for him-myself & others I'm sure would be open to his input.

sorry to go but I hope folks can used this thread to constructively discuss & speculate. :)

Hi Banshee

I have become more interested in this option over the last little bit. In the original thread, it was a little unclear as to how long Plaquenil should be taken for - 30 days, 45 days, 6 months or 1 year. Quoting from the original post: "Short term treatment can completely break the vicious rosacea cycle" ... "After 6 months of Plaquenil treatment I no longer have rosacea" yet "Dosage: 200 mg. Frequency: 2 tablets 1 x day Total Length: one year Brand: Hydroxychloroquine (generic)".

Dr Nase is busy setting up his own Forum at the moment, but until then, perhaps you could e-mail him directly for advice on these questions in relation to Plaquenil.

I'm quite excited to see that your Derm was agreeable to this medication. That has cleared a lot up for me and my concern with taking an anti-malarial for Rosacea. I've asked my Dad, who is a Pharmacist, to bring as much info up with him when he visits next week. Should make for some 'light' bed time reading! LOL At least he will be able to help me decipher all of the medical terminology! If I find anything interesting, I will post my findings. Meantime, I might just search around some of the medical web sites for journals. If you are interested, there is a small list of medical webs sites here:

http://forum.rosaceagroup.org/viewtopic.php?t=2872

Red

banshee
11th February 2006, 06:13 AM
Hi Banshee

I have become more interested in this option over the last little bit. In the original thread, it was a little unclear as to how long Plaquenil should be taken for - 30 days, 45 days, 6 months or 1 year. Quoting from the original post: "Short term treatment can completely break the vicious rosacea cycle" ... "After 6 months of Plaquenil treatment I no longer have rosacea" yet "Dosage: 200 mg. Frequency: 2 tablets 1 x day Total Length: one year Brand: Hydroxychloroquine (generic)".

Dr Nase is busy setting up his own Forum at the moment, but until then, perhaps you could e-mail him directly for advice on these questions in relation to Plaquenil.

I'm quite excited to see that your Derm was agreeable to this medication. That has cleared a lot up for me and my concern with taking an anti-malarial for Rosacea. I've asked my Dad, who is a Pharmacist, to bring as much info up with him when he visits next week. Should make for some 'light' bed time reading! LOL At least he will be able to help me decipher all of the medical terminology! If I find anything interesting, I will post my findings. Meantime, I might just search around some of the medical web sites for journals. If you are interested, there is a small list of medical webs sites here:

http://forum.rosaceagroup.org/viewtopic.php?t=2872

Red
Hi Red-

nice to meet you :) And I appreciate your thoughtful reply.

Yes I'm itching to get my hands on those case studies.. It sounds more along the lines of Accutane in terms of what it can do for Rosacea. By that I mean it has the potential to interrupt the cycle but not fix the defective vessels. Of course the inflammation is what's preventing the body from being able to heal itself.

I wasn't clear on the treatment cycle/dose either & wonder if it's also like Accutane in that they will eventually find very low-dose to be better.

I think most are concerned about the retinal detachment since it was in the upper tier, I believe, of side effects... So a baseline retinal exam & blood test is done/ periodically monitored. At east that's what my derm would have me do.

She also mentioned they prescribed this for Lupus sometimes for 10-20 yrs & it has a decent history.

Thanks for the link...If we work in tandem to collect info we can get a more comprehensive picture.

prryjones
11th February 2006, 07:04 AM
Hi Red-

She (dermatologist) also mentioned they prescribed this for Lupus sometimes for 10-20 yrs & it has a decent history.



Thank you.
Perry

redhotoz
11th February 2006, 08:30 AM
...it has the potential to interrupt the cycle but not fix the defective vessels. Of course the inflammation is what's preventing the body from being able to heal itself.

Thanks for the link...If we work in tandem to collect info we can get a more comprehensive picture.

Sounds like a plan! :D

Yes, I agree. If the inflammatory cycle could be stopped, one could possibly assume that there would be no new Rosacea symptoms popping up in the future. I can't imagine that what we currently have in the way of broken capillaries would go away? One can hope! A zap here or there could fix those though.

Nice to meet you too!

Red

Peter
11th February 2006, 10:08 AM
Hello

When carrying out your research you might want to check out the drug Mapacrine.

I know Tony Chu has for several years sometimes prescribed this at 100mg daily to patients with rosacea who have not responded well to other drugs / treatments.

Regards

Peter

banshee
11th February 2006, 10:38 AM
Thank you.
Perry

Sure :) Of course it was in her opinion it has a relatively good record.

When carrying out your research you might want to check out the drug Mapacrine.

I know Tony Chu has for several years sometimes prescribed this at 100mg daily to patients with rosacea who have not responded well to other drugs / treatments.

Regards

Peter
Thanks Peter ;) If Tony has been prescribing it mirrors what natalija had been saying on the other thread about mapacrine. That oddly gives the tx some more validity to me...Tony is such a busy guy I wonder if we couldn't find out more about his experiences w/it in his practice.

Yes, I agree. If the inflammatory cycle could be stopped, one could possibly assume that there would be no new Rosacea symptoms popping up in the future. I can't imagine that what we currently have in the way of broken capillaries would go away? One can hope! A zap here or there could fix those though.
I'm a big believer in laser/light tx as that's what has been of most help to me. None the less it's limited so something systemic has the potential to get at those areas lasers can't.

One of my concerns is simply just masking the symptoms. Antibiotics basically interrupt the inflammation too. My docs put me on them for 10+ years & then my mild rosacea went severe overnight because I didn't "see" it coming. So I'm wondering what distinguishes this drug..I also take several anti-inflammatory supplements which help, but again don't fix the underlying heart.

So I have a tendency to think of this as an adjunct & continuing light therapy to slow the vessel degradation cycle/maintain what the drug accomplished.

Peter
11th February 2006, 11:56 AM
Hello Kris

Great to see you posting again as both Forums need people like you sharing their experiences and intellectual opinions. Certainly I know myself and David are always interested in your views and support on red light treatment. Hard to believe that it's almost 3 years since you first sat in front of that all red Dermalux lamp and we both said our prayers as we were not sure what to expect :)

Well as far as I know using anti-malarials for treating rosacea is nothing new but just not considered by some as a front line drug and used as another option in the most difficult cases. I have called upon a couple of favours from Tony recently so I am a bit reluctant to write to him again on mapacrine but can I suggest you do and copy me in. He did intend contacting you about your red light experiences but never managed it, so it could be a good opportunity to tell him your opinion and also mention your interest in his LED trial. He is a busy man but a very genuine compassionate person so I think it would be well worth writing especially if some are considering giving these drugs a shot.

Good luck

Peter

redhotoz
13th February 2006, 12:32 PM
I have been searching for studies/case reports/research articles/general articles in dermatology journals on Plaquenil (Hydrochloroquine Sulfate) in relation to Rosacea.

There were four studies quoted in the first thread, three pre 1966 and one with no date. These were not specifically in relation to Hydrochloroquine Sulfate, but to other anti-malarial medications – Triquin (a combination of 3 anti-malarials – not sure what they are); Mepacrine; Chloroquine and Resochin. I wasn't able to find a way to read these though because of their age.

So, it appears that at this point in time, there is nothing to offer in that regard. Well nothing recent anyway from 2000 to 2006.

Of the studies, case reports and articles I did come across, they were most prominently in relation to Rheumatoid Arthritis or Lupus (other than Malaria of course). What I have noticed of late (and because a friend of mine has RA) is that there are many similarities in what is prescribed/suggested for RA as is for Rosacea. The link I see here is inflammation.

My resources are solely Internet web sites including the main ones www.medscape.com/homepage and www.pubmedcentral.gov as the library here is not worth considering! I did try but to no avail. If anyone else can find something then please, feel free! It’s arduous!

Mum and Dad arrived today and I have some more reading to do now! Will post more when I have had time to go through it all.

Will also check out Mapacrine but one step at a time! :)

Red

redhotoz
13th February 2006, 10:00 PM
From duplicate thread:

I am a newbie here, I will post more questions on another subject. My rhumatologist still does not think I have Rosacea only since I have arm and leg involvement. My tests for Lupus were negative, but she wants me to start taking a low dose of Plaquinil which they use for Lupus and other auto-immune disorders. I've had 4 derm's opinions and only 2 agree with the Rosacea diagnosis. I am confused, and afraid to take any new drugs, I am for the most part medication free. Does anyone here take Plaquinil and what are your experiences. Whatever is wrong with my face is made worse by certain medications. Like when I had a flu shot I had a huge flare up for a week, so I'm cautious about putting anything new in my body. Any feedback? Thanks, Roxanne

Hi Roxanne

The discussions on Plaquenil are fairly new on the Forum at the moment. There are a few members currently taking this medication and hopefully they will report their progress, good or bad, as time progresses.

You mention going to see your Rheumatologist. May I ask if this was for Arthritis? Plaquenil is also prescribed for Rheumatoid Arthritis (as well as Lupus, but you mentioned that your tests for Lupus were negative).

If you are not certain whether you have Rosacea or not, this is a good website:

http://dermatlas.med.jhmi.edu/derm/

The photos are of particularly bad cases but should give you a good idea of symptoms. You will need to click on "Index" and then "Acne Rosacea" under the "Diagnoses" column. Some people do experience arm and leg involvement with Rosacea.

Hope this helps to put a few of the pieces of the puzzle together.

Red

pippo
16th February 2006, 08:42 PM
Hi to everyone,now I am second week of plaquenil (400 mg daily).....my flushing is almost going but I don't know if it is Plaquenil effect,my redness is the same than first day ...No side effects... I continue to update my progress every week...gook luck!!

lafittevillage
16th February 2006, 10:51 PM
Hi to everyone,now I am second week of plaquenil (400 mg daily).....my flushing is almost going but I don't know if it is Plaquenil effect,my redness is the same than first day ...No side effects... I continue to update my progress every week...gook luck!!

Hey Pippo,

If it's not the plaquenil that's causing you to flush less, what else are you taking that can explain your decreased flushing?

Thanks in advance!

Miki
18th February 2006, 02:07 AM
pippo, keep us updated.

pippo
18th February 2006, 12:29 PM
Hi guys......I have started with plaquenil on 2 Februay and from this day I have had 1 or 2 flushes maximum (first I flushed every day)...I don't know if it is Plaquenil effect becouse the flush is going after a day and it is very soon.....I am so confused...but I'll continue to use Plaquenil!! BYE BYE

redhotoz
20th February 2006, 12:12 PM
Plaquenil (Hydroxychloroquine Sulfate)

Firstly, let me apologise for my typo in a previous post! I typed Hydrochloroquine Sulfate, whereas it should have been Hydroxychloroquine Sulfate! Just as well I am not sitting an exam! LOL

Anyway, from the pharmacy info sheet I have here on Plaquenil, that Dad gave me, it seems that there is not a lot that I can add about Plaquenil in relation to Rosacea, but here are some facts, none the less. I haven’t typed it all out but just the info that I thought may be of interest. I skipped the parts about children…because I didn’t think it would apply to us here. Please also note, that throughout this fact sheet, no capital letters are used when naming a drug or condition, weird, but please excuse the lack of correct punctuation…I am simply quoting!

“Actions:
Anti-malarial. Plaquenil also exerts a beneficial effect in mild systemic and discoid Lupus Erythematosus and Rheumatoid Arthritis. The precise mechanism of action is unknown.

Contraindications:
· patients with pre-existing maculopathy of the eye
· patients with known hypersensitivity to 4-aminoquinoline compounds

Warnings:
Plaquenil should be used with caution or not at all in patients with severe gastrointestinal, neurological or blood disorders. If such disorders occur during therapy, the drug should be stopped. Periodic blood counts are advised.

When used in patients with porphyria or psoriasis, these conditions may be exacerbated. Plaquenil should not be used in these conditions unless in the judgement of the physician, the benefit to the patient outweighs the possible risk.

Precautions:
Irreversible retinal damage has been observed in some patients who had received long-term or high-dosage 4-aminoquinoline therapy for discoid and systemic lupus erythematosus, or Rheumatoid arthritis. Retinopathy has been reported to be dose related.

If there is any indication of abnormality in the visual field, or retinal macular areas (such as pigmentary changes, loss of foveal reflex), or any visual symptoms (such as light flashes and streaks), which are not fully explainable by difficulties of accommodation or corneal opacities, the drug should be discontinued immediately and the patient closely observed for possible progression. Retinal changes (and visual disturbances) may progress after cessation of therapy.

All patients being treated with Hydroxychloroquine should have an initial ophthalmological examination. Ophthalmological testing should be conducted at 6-monthly intervals in patients receiving Hydroxychloroquine at a dose of not more than 6mg per kg body weight per day.

Ophthalmological testing should be conducted at 3-4 monthly intervals in the following circumstances:

· Dose exceeds 6mg per kg ideal (lean) body weight per day. Absolute body weight used as a guide to dosage, could result in an overdose in the obese.
· Significant renal impairment
· Significant hepatic impairment
· Elderly
· Complaints of visual disturbances
· Duration of treatment exceeds 8 years”

It goes on to describe how the eye examinations should be carried out.

“Skin Reactions:
Pleomorphic skin eruptions (morbilliform, lichenoid, purpuric), itching, dryness and increased pigmentation sometimes appear after a few months of therapy. The rash is usually mild and transient. If a rash appears, Plaquenil should be withdrawn and only started again at a lower dose.

Patients with Psoriasis appear to be more susceptible to severe skin reactions than other patients.

Haematological Reactions: Patients on long-term therapy should have periodic full blood counts. If evidence of agranulocytosis, aplastic anaemia, thrombocytopenia or leukopenia becomes apparent, and cannot be attributed to the disease being treated, Plaquenil should be discontinued.

Miscellaneous:
Gastrointestinal disturbances such as nausea, anorexia, abdominal cramps or rarely vomiting, occur in some patients. The symptoms usually stop on reducing the dose or temporarily stopping the drug.

Muscle weakness, vertigo, tinnitus, nerve deafness, headache and nervousness have been reported less frequently.

All patients on long-term therapy with this preparation should be questioned and examined periodically, including the testing of knee and ankle reflexes, to detect and evidence of muscular weakness. If weakness occurs discontinue the drug.

Drug Interactions:
It has been suggested that 4-aminoquinolines are pharmacologically incompatible with monoamine oxidase inhibitors.

Concomitant Hydroxychloroquine and digoxin therapy may result in increased serum digoxin concentrations. Consequently serum digoxin concentrations should be closely monitored in patients receiving combination therapy.

As Hydroxychloroquine may enhance the effects of hypoglycaemic treatment, a decrease in doses of insulin or antidiabetic drugs may be required.”

A section is dedicated to Adverse Reactions but most of that has been covered in the above. If anyone wants more specific info on this, please PM me.

“Dosage and Administration:
Initial dosage: In adults, a suitable initial dosage is from 400 to 600mg daily, preferably taken at meal times.

Maintenance dosage: When a good response is obtained (usually in four to twelve weeks) the dose can be reduced to 200 to 400mg daily (but should not exceed 6mg/kg per day) and can be continued as maintenance treatment. The minimum effective maintenance dose should be employed. The incidence of retinopathy has been reported to be higher when the maintenance dose is exceeded.

Use in Combination Therapy:
Plaquenil may be safely and effectively used in combination with corticosteroids, salicylates, NSAIDS, and methotrexate and other second line therapeutic agents. Corticosteroids and salicylates can generally be decreased gradually in dosage or eliminated after the drug has been used for several weeks.”

It then goes on to describe reducing steroid use when taking Plaquenil – more in relation to RA.

From the book my Dad gave me, “Australian Medicines Handbook”, there is a section as follows:

“Patient counselling
Tell your doctor immediately if you have any difficulty with your sight, particularly in seeing entire words or faces, reduced vision at night or intolerance of bright light. Wear sunglasses when in bright sunlight; it may reduce the chances of eye problems.

Practice points
Benefit may not be seen until after approximately 2-6 months of treatment.”

Banshee, this will not answer all of your questions but I believe that from what I have read, there is not a lot that can be said about this drug in relation to Rosacea at this point in time. The studies simply have not been done (any that I can find anyway) and the only info I have been able to round up is in relation to Malaria, RA and Lupus.

Anyway hope this may shed a little light? Personally, I would be a tad worried about taking this drug with any Ocular Rosacea involvement, but I am not a doctor, just my 2 cents worth.

Red

prryjones
20th February 2006, 12:28 PM
[quote=prryjones]Thank you.
Perry

Sure :) Of course it was in her opinion it has a relatively good record.

[quote]

Yes, and her opinion is based on facts established in the literature.
Perry

redhotoz
20th February 2006, 12:36 PM
How are you finding the Plaquenil going Perry? Too soon to comment yet?

Red

prryjones
20th February 2006, 12:51 PM
Hi Red,
So far, so good, regarding side effects.
Perry

FUredness
21st February 2006, 02:16 AM
Perry, have you noticed any improvement yet?

prryjones
21st February 2006, 04:31 AM
Nope, FU, but I've been taking Plaquenil only about 3 weeks (200mg twice a day).
Perry

summergirl
21st February 2006, 09:35 PM
Perry, is that a high enough dosage to see results? Maybe I'm imagining this but I thought I read somewhere about needing a higher dosage for anti-inflammatory effects or something along those lines.

prryjones
21st February 2006, 09:48 PM
Summer,

I am roughly following LEXI-COMPS DIH (2004) recommendations for SLE: "310mg every day or twice daily for several weeks depending on response. 155-310mg/day for prolonged maintenance therapy."

So, I figure that 400mg per day (divided doses) for a month, then 200mg once per day. I plan to be on this regimen for at least one year. Will see what happens.

Note the studies which Dr. Nase brought to our attention had the anti-malarials working while the drugs were being used for anti-malarial prophylaxis (1960's). Not sure what the dosing regimens were then, but now is roughly 300-600mg per week.

Perry

threeSixty
24th February 2006, 06:24 AM
Hi,

I have been on plaquenil now about 4 weeks taking 600mg a day (400mg in the morning, 200mg in the evening). My ocular rosacea got much better in just one week. No pain on eye lids and redness cleared a lot in the eyes. What it comes to my cheeks (permanent redness, flushing) it has improved, hard to say how much, but I am very happy of the progress so far. Even when I exercise my face don't get so hot.

I am also on lyrica (7weeks now) and applying neocutis cream (6 weeks now).

coldbliss
24th February 2006, 05:17 PM
Count me out for Plaquenil. I don't like where this is headed. I read the side-effects of taking high dosages of this stuff. It's kind of frightening. I also think that rosacea sufferers tend to jump on the "latest" breakthrough bandwagon.

Have there been in-depth medical studies completed with regards to Plaquenil treatments of rosacea (say in the past 3-5 years)? If not, then people who are taking this pill do not have enough information to make a decision to take these meds.

The drug is used to combat rheumatoid arthritis and lupus. I just don't see how this fits with the treatment of rosacea.

Third, people who suffer from meniere's disease, hearing loss, and tinnitus (persistent ringing in ears) should seriously avoid this medication. Anti-malarials are infamous for their ototoxicity levels.

Miki
24th February 2006, 05:42 PM
Count me out for Plaquenil. I don't like where this is headed. I read the side-effects of taking high dosages of this stuff. It's kind of frightening. I also think that rosacea sufferers tend to jump on the "latest" breakthrough bandwagon.

Have there been in-depth medical studies completed with regards to Plaquenil treatments of rosacea (say in the past 3-5 years)? If not, then people who are taking this pill do not have enough information to make a decision to take these meds.

The drug is used to combat rheumatoid arthritis and lupus. I just don't see how this fits with the treatment of rosacea.

Third, people who suffer from meniere's disease, hearing loss, and tinnitus (persistent ringing in ears) should seriously avoid this medication. Anti-malarials are infamous for their ototoxicity levels.


i bet you that plenty of treatments are found accidentally, so just because its an anti-malarial drug doesent mean it cant work for rosacea as well. i bet the next big roscea treatment will be a big fluke. if this works for otheres on this forum, ill probably take it myself, the only problem being how in the hell will anyone prescribe this to me.

coldbliss
24th February 2006, 06:49 PM
You may be right some day. I think there should be extensive clinical trials of plaquenil on rosacea patients before everyone begs their doctor for this stuff. I'm just urging caution.

btw...there are interesting developments coming down the road anyway. I'm curious about Sansrosa and other topicals.




i bet you that plenty of treatments are found accidentally, so just because its an anti-malarial drug doesent mean it cant work for rosacea as well. i bet the next big roscea treatment will be a big fluke. if this works for otheres on this forum, ill probably take it myself, the only problem being how in the hell will anyone prescribe this to me.

Miki
24th February 2006, 07:11 PM
You may be right some day. I think there should be extensive clinical trials of plaquenil on rosacea patients before everyone begs their doctor for this stuff. I'm just urging caution.

btw...there are interesting developments coming down the road anyway. I'm curious about Sansrosa and other topicals.




i bet you that plenty of treatments are found accidentally, so just because its an anti-malarial drug doesent mean it cant work for rosacea as well. i bet the next big roscea treatment will be a big fluke. if this works for otheres on this forum, ill probably take it myself, the only problem being how in the hell will anyone prescribe this to me.


from what i read the main ingredient used in the sanrosa topical was discovered by accident. no word yet when it will be available.

yossarian
25th February 2006, 01:12 PM
I am fine with taking a drug that is routinely used by people simply on the basis of where they're travelling in the world.

pippo
25th February 2006, 02:05 PM
Yesterday I've stopped my plaquenil treatment for problems to my eyes....!

DukeCity
25th February 2006, 03:36 PM
Pippo - What type of problems are you having with your eyes???

pippo
25th February 2006, 07:21 PM
I have always my right eye with a strange sensation...like "bathed" !!! I'm not sure if it is Plaquenil effect but for be sure I've stopped to take this drug...bye

threeSixty
25th February 2006, 10:20 PM
yes, it's hard to believe someone taking this drug for 3 weeks or something could have eye problems cause of it. I recommend you Pippo to contact eye specialist and not to worry. I had an appointment with eye specialist before starting with plaquenil and talked to him about the side effects. he said that it is well tolerated medicine, but to come back to routine checks in every year.

redhotoz
26th February 2006, 03:07 PM
Count me out for Plaquenil. I don't like where this is headed. I read the side-effects of taking high dosages of this stuff. It's kind of frightening. I also think that rosacea sufferers tend to jump on the "latest" breakthrough bandwagon.

Have there been in-depth medical studies completed with regards to Plaquenil treatments of rosacea (say in the past 3-5 years)? If not, then people who are taking this pill do not have enough information to make a decision to take these meds.

The drug is used to combat rheumatoid arthritis and lupus. I just don't see how this fits with the treatment of rosacea.

Third, people who suffer from meniere's disease, hearing loss, and tinnitus (persistent ringing in ears) should seriously avoid this medication. Anti-malarials are infamous for their ototoxicity levels.

I agree about the possible negative side effects of anti-malarials. I was very cautious when I first read about this, so I did some more research into it...a lot actually!

There has been mention of Tinnitus sufferers NOT taking this drug already and I agree with that wholeheartedly!

As far as toxicity...toxic levels come about with an 'over dose' and corrected by stopping the drug immediately. Correct dosage of the drug correlating to body weight should not allow for an over dose. If any side effects to the negative are found, of course, the drug should be stopped immediately, as with any drug.

There are no studies relating to Plaquenil and Rosacea that I have been able to find from 2000 to 2006. So this is a new idea for Rosacea sufferers.

I am not about to jump in and start taking it but I have done my homework. I am also sitting back and waiting to hear from those on the Forum who are taking it now to see how they find it.

The link with Lupus and RA comes up a lot in relation to Rosacea. Other than the obvious red "butterfly" cheeks symptoms of Lupus, I haven't done a lot of research on Lupus itself. But when it comes to RA, the link is being an inflammatory disorder...same as what I believe Rosacea is.

As with anything read about or 'discovered' on this Forum, more info should be sort before making the decision to try that particular product. I always ask my Pharmacist, GP and maybe also my Derm before trying any medication! I hope everyone else does too!

Miki
26th February 2006, 08:38 PM
where did you guys the plaquenil from? prescription from doctor? the web?

banshee
28th February 2006, 07:13 AM
I have been searching for studies/case reports/research articles/general articles in dermatology journals on Plaquenil (Hydrochloroquine Sulfate) in relation to Rosacea.

There were four studies quoted in the first thread, three pre 1966 and one with no date. These were not specifically in relation to Hydrochloroquine Sulfate, but to other anti-malarial medications – Triquin (a combination of 3 anti-malarials – not sure what they are); Mepacrine; Chloroquine and Resochin. I wasn't able to find a way to read these though because of their age.

So, it appears that at this point in time, there is nothing to offer in that regard. Well nothing recent anyway from 2000 to 2006.

Of the studies, case reports and articles I did come across, they were most prominently in relation to Rheumatoid Arthritis or Lupus (other than Malaria of course). What I have noticed of late (and because a friend of mine has RA) is that there are many similarities in what is prescribed/suggested for RA as is for Rosacea. The link I see here is inflammation.

My resources are solely Internet web sites including the main ones www.medscape.com/homepage and www.pubmedcentral.gov as the library here is not worth considering! I did try but to no avail. If anyone else can find something then please, feel free! It’s arduous!

Mum and Dad arrived today and I have some more reading to do now! Will post more when I have had time to go through it all.

Will also check out Mapacrine but one step at a time! :)

Red
sorry it took a bit to get back to you....

Thanks for collecting all this info...I'm kind bummed to hear folks believe it may be causing issues w/their eyes & that we can't find any case studies after the 1960's?? I'll have to reread Dr. Nase's post as I thought it sounded like his references were recent.

redhotoz
28th February 2006, 12:27 PM
Hi Banshee

Here are the studies that were quoted in the original thread:

"Four old studies of antimalarial treatment for rosacea. Very good results even with the older antimalarials.

FREDRIKSSON T, LODIN A, ROSENGREN S.
[Treatment of discoid lupus erythematosus, polymorphous photodermatosis and rosacea with Triquin--a combination of 3 anti-malarials.] Sven Lakartidn. 1962 Oct 4;59:2858-62. Swedish. No abstract available. PMID: 1395940233:

BRODTHAGEN H. Related Articles, Links
Mepacrine and chloroquine in the treatment of rosacea.
Br J Dermatol. 1955 Dec;67(12):421-5. No abstract available.
PMID: 13284197 [PubMed - OLDMEDLINE for Pre1966]

34: RICHTER R, TAT L. Related Articles, Links
[Studies on the treatment of rosacea with resochin.]
Z Haut Geschlechtskr. 1955 Oct 1;19(7):211-5. German. No abstract available. PMID: 13282360 [PubMed - OLDMEDLINE for Pre1966]

INMAN PM, GORDON B. Mepacrine in rosacea.
Acta Derm Venereol. 1955;35(6):446-52. No abstract available.
PMID: 13301319 [PubMed - OLDMEDLINE for Pre1966]"

I think the confusion I had with these studies is that the copy and paste seemed to be a bit messy. So, have tidied them up to show the dates correctly...1962, 1955, 1955 & 1955. I think I have placed them correctly?

Perry has promised to find the links to these studies. Pretty please Perry! :) I have searched and searched but to no avail. Maybe it is just the age of them, I don't know? I have created log-ins to medical web sites to search history but still can not locate them. Hey, I've stumbled across some fascinating stuff too!

Although these studies are from over 40-50 years ago, as Brady stated in another thread, "Everything old is new again...", from 1878! So, it may be a starting point with these old studies. I just want to be able to read them!

I am also going to embark on some research on Mepacrine, as suggested in this thread. Haven't had the time of late but will get to it as soon as I can.

Just loving this research stuff! Dad thought none of his three daughters would ever take an interest in medicine, so we now have long chats on the phone about this drug and that. So, in some small way, this horrid Rosacea I have, has brought my Dad and I closer (albeit on the phone) and even just to talk about medical stuff. Hey, but it's nice when your Dad recognises that his blonde daughter has an analytical mind! LOL

Red

banshee
28th February 2006, 09:55 PM
once again thanks Reds :)

I guess I'm a bit confused because Dr. Nase's post made it sound like this therapy has been showing results as of late. Or at least that's how I interpreted because how can one base a decision on case studies from the 60's. I assumed he was posting about now because there had been more collective evidence this was proving effective.

prryjones
1st March 2006, 02:11 PM
Hi Red,
I did a pretty extensive search, and this is all I could find. My Keywords were "rosacea", "mepacrine" "chloroquine", and/or "anti-malarials".
I don't think this is what you were seeking, but I tried.
Perry

Journals@Ovid Full Text Lazaridou, E; Sotiriadis, D; Ioannides, D; Chrysomallis, F Chloroquine in granulomatous rosacea. [Miscellaneous.]Journal of the European Academy of Dermatology & Venereology Supplement. 16 Supplement 1:117, September 2002.
AN: 00147299-200209001-00657.

lafittevillage
1st March 2006, 03:00 PM
Does that mean that the study was conducted to see how it affected rosacea's p&p?

redhotoz
3rd March 2006, 05:45 AM
Hi Red,
I did a pretty extensive search, and this is all I could find. My Keywords were "rosacea", "mepacrine" "chloroquine", and/or "anti-malarials".
I don't think this is what you were seeking, but I tried.
Perry

Journals@Ovid Full Text Lazaridou, E; Sotiriadis, D; Ioannides, D; Chrysomallis, F Chloroquine in granulomatous rosacea. [Miscellaneous.]Journal of the European Academy of Dermatology & Venereology Supplement. 16 Supplement 1:117, September 2002.
AN: 00147299-200209001-00657.

Thanks Perry!

I have spent hours upon hours trying to dig dig dig up anything recent on Rosacea linked with Plaquenil/anti-malarials. Nothing upon nothing comes up that has anything worth posting about!

Even from the first post on Plaquenil, the original thread, Dr Nase typed out a report about using an antimalarial from someone. I thought it may have been from the "Pearls of Wisdom" he spoke of? This is what was he said in the original post:

“You can find many of these treatments in "Peals of Wisdom" in Dermatology Clinics. One of the many Plaquenil reports on rosacea:

Tackling Treatment Resistiant Rosacea -- Plaquenil comes to the Rescue

A treatment resistant rosacea sufferer with severe redness, severe papules and severe burning has been treated by all the standard medications and laser treatments for 9 years without any improvement. The most amazing thing about the plaquenil is that my rosacea got significantly better. It's almost completely cleared without any other medication or maintenance treatment.. I don't feel like everyone's looking at my bright red, blotchy cheeks anymore. Both dermatologists are shocked. The redness is gone, the flushing is almost completely gone and the burning sensations have disappeard. I have had severe rosacea for 9 years. After 6 months of Plaquenil treatment I no longer have rosacea. I am now off Plaquenil for almost 3 years with no relapse.

Dosage: 200 mg.
Frequency: 2 tablets 1 x day
Total Length: one year
Brand: Hydroxychloroquine (generic)”

I searched through other boards/forums to see if I could find someone who had used an anti-malarial for Rosacea. The closest I got was from this person rating the effect of Plaquenil on their cheek rash:

"KRK (4) [Norfolk, VA - United States] 8/29/2003 7:16:22 PM
Review PlaquenilI've been amazed at how much better I feel after a year on Plaquenil. Both the pain and fatigue are more manageable. I have fibromyalgia and antiphospholipid syndrome. I, supposedly, don't meet enough criteria for a lupus diagnosis; but, it's always in the back of my mind. I've had a malar rash for almost 10 years. The most amazing thing about the plaquenil is that my rash got significantly better. It's now more pinkish in hue than red. I don't feel like everyone's looking a my bright red, blotchy cheeks anymore. I feel more normal. Two different dermatologists said it was rosacea, but none of the medications for that ever did anything for me. Dosage: 200 mg.Frequency: 2 tablets 1 x dayTotal Length: one year Brand: Hydroxychloroquine (generic)"

Link: http://www.remedyfind.com/review_long.asp?id=3459&review_id=10663

The reports seem awfully similar but of course Geoffrey didn’t actually use quotation marks, so maybe he just typed out the bits he wanted us to read about this drug as “The Biggest Treatment Secret in Rosacea”?!

So, Perry, you haven’t been able to find the 1955 x 3 and 1962 studies then? Blah! Guess it’s back to square one then! Why are these studies so hard to find? I have spent hours trying to find them! I used so many key words…from Rosacea to doctors names, dates etc.

I just think I have spent way too much time trying to find things that…well..I don’t know…perhaps don’t exist???

It all seems way too strange to me!

Red

prryjones
3rd March 2006, 06:35 AM
Red,
The reason I couldn't find anything is bc first, 3 of the four studies are European (British, German, and Swede), and second, the age of the literature (the databases I checked only go back to 1966, I think).
How about checking with a rheumatologist to get an opinion of what Plaquenil can possibly do for rosacea? Thats prob. your best bet -- to check with an MD who prescribes this stuff -- certainly he has has patients with rosacea before....
Take care,
Perry

redhotoz
3rd March 2006, 11:51 AM
Red,
The reason I couldn't find anything is bc first, 3 of the four studies are European (British, German, and Swede), and second, the age of the literature (the databases I checked only go back to 1966, I think).
How about checking with a rheumatologist to get an opinion of what Plaquenil can possibly do for rosacea? Thats prob. your best bet -- to check with an MD who prescribes this stuff -- certainly he has has patients with rosacea before....
Take care,
Perry

Thanks for trying anyway Perry. It's appreciated. I don't understand why you feel that the place of origin for the studies should have any bearing on being able to find them, as the Internet is world wide. Perhaps it is just to do with the age of them and being prior to this magical year of 1966?

I don't know any Rheumatologist or GP who would freely give me advice. Since my GP hasn't prescribed an anti-malarial for Rosacea and I don't visit a Rheumatologist, I guess my only source of free information is via Internet research.

I am not sure if I should dedicate more hours on specifically researching Mepacrine too?

Anyway, think I will just sit back for a while and see how you and others go with Plaquenil. Would be fantastic for you to come back and tell us all that you have had total clearance of Rosacea after, ummm, I am guessing 6 to 12 months?

Thanks again Perry.

Red

prryjones
3rd March 2006, 03:25 PM
Red,
You're welcome.
Just bc info. can't be found on the web doesn't mean it's not out there.
As a matter of fact, most of the information is NOT made available to all.
Medline is great, but certainly doesn't encompass all of the literature.
For an example, I don't think there is a SINGLE pharmacy journal available via the web (IPA, IOWA, etc). Why? Who would normally use this stuff but clinicians, and then so we either have to pay for the service or have access through a university (as I do).
Even MAJOR US medical journals, such as New England Journal of Medicine, aren't available through the web, I don't think.
Just bc it cant be found by either you, I, or anyone else -- certainly doesn't mean it doesn't exist.
Perry

flareface
6th March 2006, 09:00 PM
Can anyone who is taking or has taken Plaqunil comment on their personal side effects, even if they are small or not bothersome. I've mentioned here before that my doc wants me to start on a "preventative" dose of this drug as she thinks I have more going on than just Rosacea.
I was absolutely against this suggestion at first, but as time goes on, and my redness and swelling are progressing to my neck and chest, I am starting to think..."Maybe". I'm seeing the doc again in a couple weeks and I know she will suggest the Plaquinil again, so I want to get as many opinions as possible about side effects. That is what I am most worried about, or I would have taken it by now. If I do decide to go on it, I will of course chart my progress here. I'm thinking of going onto the Yahoo Lupus board called "Lupies" and asking questions there about the side effects of this drug. Any one else here have further updates? Rox

threeSixty
7th March 2006, 07:09 PM
no side effects. at the beginning I had some probs with stomach, but nothing too troublesome. I have been on it for five weeks now taking 600mg a day. There has been improvement I must say. Definite plan is to keep eating these but to reduce the dosage to 400mg a day.

flareface
8th March 2006, 02:15 AM
Thnaks ThreeSixty for the personal experience feedback. I did ask questions on the Lupus board last night about side effects of the drug and got so many kind and helpful answers. Only one person said they had trouble with the drug, everyone else said they tolerated it well. I'm leaning towards giving the medication a try. What do I have to lose?
I'll be the boards next case study. Rox

FUredness
8th March 2006, 11:52 PM
Hey threeSixty, what type of improvement have you seen? Background redness? flushing? and how much? I just ordered this, hopefully it will help.

threeSixty
15th March 2006, 05:17 AM
Hi FU. It really is impossible for me to say exactly how much it has helped, but the background redness has reduced perhaps. Flushing, hard to say. I also started with doxycycline (40mg/a day) a bit after plaquenil, so it might have something to do with it. Anyway I will continue at least a year with this med. I will update within a month.

banshee
6th April 2006, 10:24 AM
just wondering if folks had any more progress with this...Particularly if you have ocular rosacea-any assistance w/that? Thanks.

threeSixty
8th April 2006, 07:35 PM
I really think it is the doxycycline which helps with the eyes, don't know. Anyway I will not give up this treatment. I've been on it 10 weeks now. It really is difficult to analyze your own redness so objectively, cause you always hope and wish for the best. Well at least my eyes are much better now than earlier.

FUredness
12th April 2006, 02:04 PM
Hey, I started taking Plaquenil about 10 days ago and it made me really sick. I had slightly blurry vision, and I have been very nauseous and dizzy for the past few days. So needless to say I am going to stop taking it.
I ordered 200 pills, and I probably have about 180 left. If anybody wants them, I would be happy to send them to anyone in the US for free. Hopefully others will have a better reaction to it.
Send me a PM if you want them.

banshee
3rd May 2006, 07:31 PM
okee I did some digging & spoke w/a pharmacist at length..

Firstly something not mentioned to me by any of my docs was that Plaquenil is an immunosuppressant! Same thing as steroids however, I asked what distinguishes it & basically steroids have more side effects because they work on general receptors vs specific ones. In otherwords P acts on more particular things such as neutrophil & basophil expression, disrupting the domino effect if you will at a more pntd level.

That's where a lightbulb went off...I had been trying to figure out what possible mechanism of action this drug may have for rosacea aside from being partially anti-inflammatory (& also what made it more worth while than say antibiotics). I had read I believe a NRS study that there was over-expression of neutrophils in rosacea & Dr. Nase had mentioned how anti-biotics disrupt them. Not in making rosacea auto-immune, but rather a normal typical process gone out of control & working against us.

In addition, I asked if perhaps given P was an anti-malarial if it had any effect on fevers. Possibly working on the thermo-neutral zone like clonidine. The pharmacist did not believe so, but it is also classified as anti-rheumatic which obviously rheumatoid arthritis is another inflammatory condition w/the body working against itself.

Knowing now what class of drug Plaquenil is I'm not too keen on taking immunosuppressants. None the less it explains why it may be a bit more powerful than antibiotics in disrupting the inflammatory cycle, while not being as detrimental as steroids.

DukeCity
5th May 2006, 03:43 AM
Perry - Are you still on the Plaquenil?? - any updates on progress ect.?

natalja
20th June 2006, 10:22 AM
Hi,

is anyone still on the plaquenil? Any long(er) term experiences?

Found this comment on the net:

"Do you have any experience of Hydroxychloroquine being used to treat the
blushing associated with rosacea?
My Dermatologist has just prescribed me the medication in question, but I
am
slightly apprehensive as i have heard it can affect your eyesight. He did
say
it was the third line of treatment behind Clonidine and Propanolol and has
been used extensively in Scandinavia. I have noticed you mention Zispin
quite
often and wonder which of the above mentioned medications you feel is the
most effective in treating the facial flushing.
Hi no I haven't any experience of Hydroxychloroquine but you can find some
info at http://www.rxlist.com/cgi/generic/hquine_cp.htm and please let me
know how you get on with it. Clonidine is the first treatment I would
mention to people for blushing ahead of propanolol and Zispin. Perhaps use
Clonidine in conjunction with a beta blocker for stressful events, See
rosacea treatments page and the link to
http://dreamwater.org/health/sadhelp/ peters site on blushing with in depth
info.
best wishes and take care
kcn."

(http://www.acne-rosacea.co.uk/Readers%20Forum%20week21.htm)


Very curious, especially if the side-effects are acceptable and if overall redness and flushing are limited with the plaquenil.

Best wishes, Natalja

sammi
20th June 2006, 09:56 PM
hi, .. I'm taking plaquenil right now. I've been on it for about a month, the only side effect I had was blurry vision after about 5 days, apparently this is an uncommon but not serious side effect, I stopped taking it for a while, while I was getting my eyes checked, and then started back on it again with no problems. The eye problems are really rare and usually only occurr after youve been on it for a long time. If you dont exceed 6mg/kg of body weight you should be fine. Also its reccomened to have a baseline eye exam and then get checked again every 6 months to 1 year, if they catch any problems early, they can take you off the medication, and any problems are reversible.
I also found this on a lupus site .. hopefully it helps answer some questions:

What are antimalarials?
1. Introduced during World War II as an antimalarial drug, chloroquine (brand name - Aralen) was later followed by synthesis of the chemically-related compound, hydroxychloroquine (Plaquenil). As early as the 1960's it was noted that these medications produced a beneficial side effect. With chronic use they could ease the joint discomfort occurring with rheumatoid arthritis. Additionally, it was later observed that they have similar beneficial effects in the management of these same symptoms in Systemic Lupus Erythematosus (SLE). Skin lesions of Discoid Lupus Erythematosus (DLE) which have not responded to topical therapy (medicated creams, lotions, etc.) may improve with the use of these "antimalarial drugs".
How do antimalarials work?
Antimalarials block UV light from damaging skin; have an anti-inflammatory effect; lower cholesterol levels; inhibit clotting; block cytokines, which promote inflammation; & most importantly, alter the acid-base of the cells, which limits their ability to process antigens. (If antigens were processed, this would lead to the creation of unnecessary antibodies.) Antimalarials do not lower blood counts, or make patients more susceptible to infection.
What antimalarials are used in the treatment of lupus?
Hydroxychloroquine (Plaquenil) is available as a 200 mg tablet and is generally prescribed to be taken as one or two tablets once or twice daily.
Chloroquine (Aralen) is marketed as a 250 mg tablet which is usually taken once daily.
Some physicians prefer to prescribe hydroxychloroquine, referring to some studies which describe evidence that it may have a lower potential for damage to the retina of the eye. Other clinicians maintain that the low doses of these agents in common use do not make this choice critical. Preference for either of these drugs may be regional, or may reflect training, product familiarity and personal conviction.
When are antimalarials used?
Patients with Lupus who may be advised to begin treatment with these medications include:
Patients who have already been treated with anti-inflammatory drugs but have experienced inadequate symptom relief or troublesome side effects.
Patients who may be able to be controlled with lower doses of prednisone if they also receive an antimalarial drug (thus avoiding side effects associated with higher doses of prednisone).
Patients with medical conditions which make it undesirable for them to be maintained on prednisone or other anti-inflammatory drugs.
What lupus symptoms can antimalarials help?
Discoid lesions, redness, mouth ulcers & hair loss improve in 90% of patients. Joint pain & swelling decrease. Over time, inflammation of the pleura & pericardium lessens, as do symptoms of fatigue & cognitive dysfunction. Antimalarials are not effective in the treatment of organ-threatening SLE.
How long does it take for antimalarials to start working?
It can take anything from 3 weeks to a few months for them to start working. You may not notice any improvement at first, but if you stop taking the antimalarials you will often find the symptoms worsen, therefore the drugs have been working but at a slow rate.
What are the side effects of antimalarials?
Side effects which can occur in patients taking hydroxychloroquine (Plaquenil) or chloroquine (Aralen) include:
More common - diarrhoea, headache, loss of appetite, nausea or vomiting, stomach cramping or pain.
Less common - bleaching of hair or increased hair loss, blue-black\ discoloration of skin, finger nails, or inside of mouth, dizziness or light headedness, itching (more common in blacks), nervousness or restlessness, skin rash.
These side effects may go away after the patient's system adjusts to the medicine. It is important to check back with the doctor, however, if they are continuous and bothersome.
Other side effects are more rare and should be reported immediately to the physician:
- convulsions (seizures)
- increased muscle weakness mood or other mental changes ringing or buzzing in the ears, or any
- loss of hearing
- sore throat and fever
- unusual bleeding or bruising
Blurred vision or any other change in vision after prolonged treatment are symptoms which should always be reported immediately to your doctor. They may represent early signs of toxicity to the retina of the eye which is generally preventable if reported early. Low doses, used at present (as noted above), are rarely associated with retinal toxicity. As a precautionary measure it is recommended that patients commencing treatment with the antimalarial drugs receive a baseline ophthalmic evaluation. This examination should be repeated every six months while taking the medication and for a further period of time if treatment was discontinued due to visual symptoms. Periodic routine blood testing (hemoglobin and white blood cell count with differential) has also been recommended for early detection of other adverse effectsms are revesible.

natalja
21st June 2006, 09:24 AM
Thanks Sammi,

do you take the plaquenil for your rosacea and has it any positive effect on it you think?

Natalja

sammi
21st June 2006, 03:45 PM
no prob :) .. i do take it for my rosacea,... my rhuemetologist also seems to think i have mixed connective tissue disease b/c my hands get really swollen sometimes.. and i get a blue kind of lacy pattern on my arms and legs when they get cold. I havent really noticed much results so far, I know its supposed to take a while for it to work. I talked to some people with lupus and they said sometimes it takes up to 9 months before seeing any results. I have been having some "good days" lately tho.. a good day for me is when I can sit in front of a fan all day and not flush/burn.. so hopefully thats a good sign!! .. I"ll keep you posted if anything changes .. if anyone wants more info pm me anytime.. I have lots of papers and information on the stuff!!

natalja
21st June 2006, 04:41 PM
Hi Sammi,

thanks so much for the information. Wow, do I know what you mean when you say a good day is one when you stay sort of ok behind the fan 24/7! Don't realise sometimes there are others at the forum with this same severity of symptoms :oops:

May I ask for how long you have been taking the plaquenil so far and how much? My doc. prescribed it to me a few weeks ago, after I asked her for it, but I haven't started yet. I can react so terrible to medication and it takes ages :roll: before my face calms down again then. Suppose the summer is a tricky time to experiment for us anyway. But your information is very, VERY welcome. Thanks again.

Natalja

sammi
22nd June 2006, 03:23 PM
hey Natalja.. your welcome, I hope I can help :) .. I started the plaquenil May 10th, and then took it for about 10 days, and stopped b/c of my vision going blurry. I took a 2 week break from it, then started back again with no problems. I'm on 200mg/day, Im pretty small so the 200mg is enough for me. Your doctor probablly gave you some info, but in case she/he didnt, I'll tell you what I know. ...You need to take it with lots of food, to avoid an upset stomach, if you do find you have bad side effects, my doc suggested to me to take a break from it for a while and then start with a lower dose and slowly work your way up. I was pretty worried about the eye problems, but I know they are extremly rare, there is a grid that you can print off the internet, called the "Amsler Grid" which is just bascically a square box with lines and a dot in the middle, my doc told me to look at it every 3 months or so, and if the lines appear cuved or distorted it could be an early sign of a problem. I really hope your skin wont react badly to it, it shouldnt,.. unless you have psoreyesis (i have no idea how to spell that) then it can make it worse, apparently its supposed to act like a stronger version of a NSAID, but takes a while to kick in. I think that covers pretty much everything, if you have any more questions ask anytime, and if you do decide to try it let me know how it goes :D

lafittevillage
23rd June 2006, 05:07 AM
Sammy - do you see any benefits from taking plaquenil?

sammi
24th June 2006, 01:15 PM
no, not yet.. but like I said, I've only been taking it for about a month so its sill kinda early to say... if I do notice anything I'll definatly let u know :D

sammi
26th July 2006, 06:10 PM
I had to stop taking the plaquenil.. I started seeing halos of light and had missing/blanked out spots in my vision. I went to my regular eye doc.. and she said she couldnt see anything, but she agreed to send me to an opthamologist. (I dont go until Aug 29) I also called my rumetologist and she didnt really know what to do, but I do know that it can be an early sign of the vision damage cause by the drug.. and my vision is defiantly not something I want to be messing around with. so for now Im not taking it.

redhotoz
29th July 2006, 06:39 PM
Sorry to hear it didn't pan out Sammi. Thanks for the up-date!

Jen

Guest
27th November 2006, 07:00 PM
Hi!

I find this thread highly interesting. Have anyone kept on trying this medicine for a longer period?

It's been quite a while since the last post.

Thanks,
Peter