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Plaquenil?
I was diagnosed last March and have only been using topical steroids (mometasone furoate solution) and trying to stick to an AIP diet (which seemed to be having miraculous results -- a little bit of regrowth, even -- until it wasn't, and I had a painful flare-up and lost more hair). I'm starting to worry that it might be unsafe to be on topical steroids for so long; I feel like they might be impacting my energy levels, sleep, and ability to respond to stress. I also had no pain with my FFA prior to diagnosis; it might be coincidental, but as soon as I started using topical steroids, I started feeling sore whenever I didn't.
anyway, last spring I refused Plaquenil because the risk to my eyesight and the possibility of other side effects (I am a person who tends to get the side effects whenever I take a drug) didn't seem worth it. As I continue to lose hair (and begin to lose some eyebrow) and worry about the effects of these steroids, I am rethinking that decision. I'd love to use this thread to gather up your experiences -- good, bad, neutral -- with this particular drug.
The Excimer laser, by the way, seems like the only treatment with good prognosis and no risk -- and my derm told me there is almost no way my insurance company would pay for it for FFA.
Alternatively, I might just save up for one of these: http://www.westchestermagazine.com/Wellness/February-2017/3D-Printe...
Replies to This Discussion
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Permalink Reply by Donna on
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I am on clobestatol (corticosteroid). I started in October 1X every day for six weeks. Then went back to see Dr. & she said the inflammation was gone & to use 3x/wk until I see her again in 6 month. I haven’t had any side effects at all.
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Hmm, that is interesting- 3d hair, it sounds very similar (except for the 3d hair part) to Lucinda Ellery system, but it's something to look into.
As far as Plaqeunil, I do not take it, I tried it for about a week and gave up on it, could not do it and for the past few years I seem to now also get every side effect there is with medication so it was a no go for me!
I do not take any medication at all anymore, I use castor oil and essential oils to control any itching, which is rare, one of the few good things about this is that I don't have the itching or irritation that some people get on my scalp!
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I started taking 1x 200mg daily plaquenil on 1 Dec 2016, alongside 1x daily Dermovate (cocortosteroid) which I started to take 6 weeks prior to that. The steroid does make me feel slightly sore and I haven’t noticed it reducing inflammation. The first day or so if taking plaquenil I felt awful...headache, nauseous etc but this improved. I have experienced a rash on my chin and inner arms which I treat with aloe vera gel. In this time I have lost an inch plus of hair around ear area and more receding noted front scalp are so no sign of stabilising loss. However, it takes 4-6 months for effects of plaquenil to be noted and studies suggest 30% chance if success. I completely against taking medication but in my state of devastation and disappearing Hair I didn’t think I had a choice other than to take it. I have a friend who takes plaquenil to treat lupus and given she appears to experience no side effects I thought I’d give it a try. I find it incredulous that there is no cure for this condition and treatment seems to be random at best depending on which dermatologist you see. My dermatologist wasn’t even keen to prescribe plaquenil saying I was at such early stage of the disease!! I wish more research undertaken and better protocols in place. If only researchers would cast an eye over this site and collate some information.
Good luck
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Hi I had 12 rounds of excimer and it did nothing, AIP for a whole year - nothing but I did lose loads of weight. Unfortunately plaquenil gave me a rash and blurred vision so I only took it for a month. Currently I’m in Eliseo cream and finasteride and acitretin. Too early to say if it will work but I’ve tried immunosuppressants and lots of other things with no benefit. This is my last chance saloon as out of options sadly. If this doesn’t stop it I’m shaving my head and going for a full wig as for me watching the progress is harder than just being bald and accepting it. I’m sick to death of watching, waiting and obsessing about this stupid disease!
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Hi Lara
best of luck with your new treatment regime. I have read finasteride has the highest percentage chance of success. I know exactly what you mean about thought of shaving versus waiting and watching soul destroying progression. It’s like torture.
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Hi akb
Thank you for sharing the info about the 3D system, it does seem similar to the Lucinda Ellery system, and the info about being suitable for sensitive scalps is useful to know. At the moment I am ‘coping’ with this crappy condition with the use of topical solutions - shampoo and ointment; and trying to stay positive and keep my stress levels low. (I don’t want to take any medication that might have consequences for the rest of my health eg damage to my eye sight.) I am beginning to investigate wigs and hair pieces - my present thoughts are to ‘rock’ the wig - with different looks. Apart from the front section of my hair-line continuing to thin and vanish, never to return it would seem (unless they find a miracle), the rest of my hair is still looking strong, so a hair piece is probably the answer for the time being.
I hadn’t heard about the Excimer laser so will look that up.
xOx
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Permalink Reply by ammie on
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I take Plaquenil 200 mg twice a day and haven't experienced side effects. I've been taking it for about two years now. It has cleared up the flakiness on my scalp and I have less shed since I've used it. I see a retina specialist once a year who says he feels it is safe for me to continue taking it.
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