Comment

Comment by Simone NJ USA on February 18, 2013 at 6:00pm

Thanks Debs & Robyn for your comments...x

Comment by Robyn, Melb. Australia on February 18, 2013 at 5:44pm

Hi Rebecca,
I have been on Plaquenil almost 2yrs with no side affects that I can detect. My specialist made sure I had an eye test that included checking the retina before going on it. At first she said I needed to have the test every year, but last appointment she told me once every 2 yrs now seems to be the requirement as research has shown there only appears to be a chance of getting retina damage over long term use. It would be wise to make sure you don't already have any retina issues before commencing the medication I would think. I am happy at this stage using Plaquenil as I do believe it might be slowing the process for me - I don't believe that or anything at this stage will stop the process though, which appears to be the consensus in our discussions. Ultimately you need to be happy with taking any type of medication yourself. It's good that you can get feedback from others who have the experience.

Comment by Debs on February 18, 2013 at 5:34pm

Simone I want to stop my hair loss but my gut feeling is exactly what you have written, this condition doesn't seem to respond to treatment and the long term effect of taking drugs will have some negative impact on one's health. It is very hard to know what to do for the best.

Comment by Simone NJ USA on February 18, 2013 at 1:37pm

Welcome to you, Kath...

Comment by Simone NJ USA on February 18, 2013 at 1:36pm

Hi Liz:

I, too share your views. I was given a prescription of Plaquenil & haven't used it as yet. I have done many researches regarding all these kinds of anti inflammatory drugs into the body and over the course of time it leaves the body very vulnerable to thing like cancer an other infections. I'm not currently taken anything right now and still debating whether to just let this thing run its course since it seems to stabilize on its own and really the course of this disorder seems to be inevitable...thoughts anyone?

Comment by Kath UK on February 18, 2013 at 12:52pm

Hi everyone. I'm new to the group and have been following this discussion with interest. I'm seeing a dermatologist in a couple of weeks after a gap of two years during which I've been using Dermovate. Last time I saw a consultant dermatologist he suggested I take a course of Cyclosporin but when I read about possible side effects I decided against it. I wonder if this new dermatologist might suggest I might take plaquenil?

Comment by Kath UK on February 18, 2013 at 12:45pm

Comment by Liz on February 18, 2013 at 11:45am

Hi Simone. I was prescribed Doxycycline and Steriods. The Doxycycline was the alternative to the plaquenil. The steriods were prescribed for 8 weeks for a boost. However I have now decided that I am not going to take anything further until I have spoken to another doctor. I was a nurse for many years and I always err on the side of caution when it comes to medication. When it comes to my eyes I prefer to take the advice of the eye hospital and not of a dermatologist.
x

Comment by Simone NJ USA on February 18, 2013 at 11:26am

Hi everyone:
Liz, can you telle what meds you are taking now?

Comment by PamW San Diego, CA, USA on February 18, 2013 at 10:12am

Rebecca, the reason why you have an eye exam is so they can get a baseline to use as a basis for comparison. My eye doctor said problems are very rare and are reversible should anything go wrong. I believe they are looking at your retinas, and not vision issues. So, if you had an exam recently and they have the records, it is probably ok to use that exam as your basis for comparison. Plaquenil can take 3 to 6 months before it begins to work.

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