Plaquenil for PMR?
Posted , 9 users are following.
I'm coming up on 4 yrs. since I was diagnosed with PMR. I'm currently just about at 3.5 mg. Medrol in the morning, and another 0.5 mg. at night. My Rheumatologist keeps suggesting Plaquenil which I have so far rejected. Are there any reports of it being helpful in getting off steroids in PMR?
0 likes, 15 replies
EileenH SectionedThrice
Posted
If you are already down to 4mg Medrol it is crazy to try to force you to take another unproven drug in the hope it might get you off pred. None of the so-called steroid sparers is proven to even reduce the dose of pred you need never mind get your off pred altogether and plaquenil in particular has no evidence it works.
Recommendation 7 here:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Plaquenil (hydroxychloroquine) is mentioned in the last paragraph.
4mg Medrol is well below what is called a physiological dose - the amount of corticosteroid your body makes naturally and which is essential to life. At this level your body is making enough to top the oral pred dose up to what the body needs and there are next to no risks of being on such a low dose:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
Hope this helps
Danrower SectionedThrice
Posted
I gave it a fair shot a few years ago for 2 months. The only thing it did was make me extremely light sensitive where I had to wear sunglasses inside the house. I'm not sure why it is recommended so often but I have never heard anyone say that Plaquenil gave them any relief from PMR symptoms. Took 30 to 60 days for it to purge from my system.
Good luck
ClaireJG SectionedThrice
Posted
I was put on Plaquenil as my rheumy wondered about Lupus, but the current diagnosis is atypical PMR as my hands are involved. I'm still taking Plaquenil, but it doesn't seem to have any effect and isn't getting me off my steroids any quicker. Luckily I don't have any noticeable side effects.
Danrower ClaireJG
Posted
Hi Claire
check out RS3PE. google it. Bad rheumy said I didn't have PMR cause of the involvement of hands and feet. I believe there are a schooling of symptoms in this autoimmune subset which the presence or absence of any specific areas, or symptoms, or blood tests do NOT rule out PMR or RS3PE. Me thinks this inflammatory condition has a broad spectrum of manifestations.
Good luck
ClaireJG Danrower
Posted
Hi Danrower
The rheumies seem to think that involvement of the hands and feet rules out PMR, even though every other sign/symptom fits. I had wondered about RS3PE as I'm still not happy about the idea of Lupus or RA (like I get to choose....). The blood tests were all negative for RA, but I had three blood tests for ANA (Antinuclear Antibodies) and one test was a weak positive, which my rheumy suggested might indicate Lupus. When I questioned the negative/vague positive/negative sequence, my rheumy said "it flits". Great.
peggy_56092 ClaireJG
Posted
At onset of my PMR experience, three months before diagnosis and prednisone, there was hip/shoulder/leg pains, tingling down one arm, and swollen fingers so that I couldn't wear my rings for six months. I also lost 20 lbs and had night sweats.
EileenH ClaireJG
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Danrower EileenH
Posted
Hi Eileen,
Great to know. if you remember, me too, with the hands and feet. Could you kindly include the reference to that conclusion?
And, as I've said before, and will say again, Eileen: Thank You! You are the best!
EileenH Danrower
Posted
I don't know if they have published or whether it was an in-house study. I'll ask.
ptolemy EileenH
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EileenH Danrower
Posted
I asked the potential lead author - she is currently writing it up and (I quote) "trying hard to be objective and not pre-judge the results"!
I will post when I hear a conclusion.
ClaireJG EileenH
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ClaireJG EileenH
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EileenH ptolemy
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ptolemy EileenH
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