Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hello,
I have some questions about Plaquenil.
I've been on it for almost a year for DM (10mo, actually). I've been on basically the same, level dosage - 200mg 1x day. I'm 28, Female, small (less than 115lbs).
Initially, my rashes got WAY better from the plaquenil - my joints have generally been better, no loss of strength, and my fatigue level went way down.
I appeared to be side-effect free.
In the last 4 weeks I have started experiencing:
-low grade nausea
-unintentional weight loss (about 5-6lbs, significant for my size/build. I've had trouble getting it/keeping it back up around 115)
-hair loss (it was like pressing a 'go' button and suddenly full strands are falling out big time every time i touch it, wash it...by itself...etc)
-worsening skin rashes/increased sun sensitivity. I am having to resort to rather strong topical steroids/Elidel/Protopic on my cheeks and nose very regularly - no one seems to have any idea of how to help reduce the swelling/burning once the rash gets going there. clearly long term steroids on my face (esp at this strength) aren't a good idea.
I know that these can all be side effects of Plaquenil - but also just part of DM getting worse.
Is there anyone else who has been on/is on Plaquenil? Is it normal for side effects to suddenly kick in after being on the drug this long? I understand it does take awhile for the drug to get up to "therapeutic levels" initially, and I did have a big "jump" in improvement around the 4th-5th week of treatment.
I suppose one way to know for sure would be to totally stop the P for a few weeks. But I am terrified of how much worse the joint/muscle pain/rashes might be as a result, and then taking the time (over the holidays) to potentially get the P dose back up in my body. Also the only alt I've been on is Prednisone, which isn't an option for me again. I'd have to try a different steroid if i had to stop using the Plaquenil.
I have some questions about Plaquenil.
I've been on it for almost a year for DM (10mo, actually). I've been on basically the same, level dosage - 200mg 1x day. I'm 28, Female, small (less than 115lbs).
Initially, my rashes got WAY better from the plaquenil - my joints have generally been better, no loss of strength, and my fatigue level went way down.
I appeared to be side-effect free.
In the last 4 weeks I have started experiencing:
-low grade nausea
-unintentional weight loss (about 5-6lbs, significant for my size/build. I've had trouble getting it/keeping it back up around 115)
-hair loss (it was like pressing a 'go' button and suddenly full strands are falling out big time every time i touch it, wash it...by itself...etc)
-worsening skin rashes/increased sun sensitivity. I am having to resort to rather strong topical steroids/Elidel/Protopic on my cheeks and nose very regularly - no one seems to have any idea of how to help reduce the swelling/burning once the rash gets going there. clearly long term steroids on my face (esp at this strength) aren't a good idea.
I know that these can all be side effects of Plaquenil - but also just part of DM getting worse.
Is there anyone else who has been on/is on Plaquenil? Is it normal for side effects to suddenly kick in after being on the drug this long? I understand it does take awhile for the drug to get up to "therapeutic levels" initially, and I did have a big "jump" in improvement around the 4th-5th week of treatment.
I suppose one way to know for sure would be to totally stop the P for a few weeks. But I am terrified of how much worse the joint/muscle pain/rashes might be as a result, and then taking the time (over the holidays) to potentially get the P dose back up in my body. Also the only alt I've been on is Prednisone, which isn't an option for me again. I'd have to try a different steroid if i had to stop using the Plaquenil.
difference in my rashes and my hands.
I understand you said you can't take Prednisone, but generally to get into remission, some sort of steriod has to be taken. Have you asked about Medrol?
Blessings,
Kim
Maruska
I was on prednisone for 12 weeks about a year ago and then again about 6 months ago...symptoms reoccurred within about a week after finishing the prednisone taper each time. The prednisone actually weakened/caused some fractures in my spine already. If there's a way to avoid taking steroids, I definitely need to consider it. Another member suggested Medrol instead of Prednisone - if indeed it is from the Plaquenil, and I have to go back on a steroid, I will ask if I can try Medrol instead. It will still cause problems with my bones, but perhaps at least I won't be psychotic while on it as well. I just wonder if it IS the plaquenil. I did see improvement like I said a few weeks afte starting Plaquenil, but now things seem to be getting worse + side effects.
Yes - I get it REALLY BAD on my face (like to the point where I get purple, cheeks push swelling up into my eye sock area, etc - looks more like a malar rash to the Nth degree) and my hands. And of course there is only so much lotion you can use, they can't be totally covered all the time, etc. I don't get it too bad around the cuticles but tend to get it across the knuckles and oddly my finger pads. At one point (before they figured out it was DM) a few swelled so bad they thought I had like a MRSA infection and did the crazy IV antibiotics...which didn't really work...talk about stressful ;) There was talk of "doing what was needed to save the rest of the fingers". Not cool.
I actually went ahead and scheduled a recheck w my rheumatologist for early Dec (from late Jan) - it was the earliest available. I'll keep watching closely to see if I can figure it out myself, and post back if much else changes.
part of me weirdly hopes that this is from the plaquenil and I'm NOT this much more sun sensitive, but...sadly...i think you may be right on the disease just worsening. On the upside, I had some nerve and muscle tests done recently and all is well there. It's just the skin/hair issue + the nausea/appetite/weight loss.
I suppose that is at least a little bit of an upside...right??
Maruska
I know it's rough on the bones, however, there are things such as actonel, fosimax, boniva, etc that can help with that.
Blessings,
Kim
Yes, as of the last time I spoke with my Rheumatologist she wasn't comfortable even with low dose prednisone, due to the psychological problems I had on it and the fact that my bones got so brittle so fast. Neither she nor my GP nor my GYN would prescribe anything like Boniva because I am not post-menopausal. They claim that I should be on estrogen to protect my bones instead - despite the fact that it caused a MASSIVE flare when I tried it (numerous times) before.
I finally went to a Derm who agreed with the idea that topicals don't do much. Her advice was to take a short burst of prednisone on top of the Plaquenil when things get really bad - perhaps 1 dose of 20-40mg to 'squash' the flare.
ShawnaN: thanks for the suggestion. I'd read that about Plaquenil (inc sun sensitivity, rashes) but every doctor I've mentioned it to has pretty much shrugged it off.
Interestingly, the derm I saw recently actually recommended I go to GW or Hopkins. I'm not sure how I feel about that...but good to keep in mind I guess.
I will see what my Rheum says (with the info from the Derm now) on the 15th. In the meantime, I was able to get some prednisone filled - so I have it for days like today when my face suddenly burns and swells :( I am leaning towards independently taking a break on the Plaquenil after the holidays...just see what happens...
At times in my past a one day blast did tame my rashes, i wish you luck... Shawna