Plaquenil for PMR?

Bones, joints and muscles
1

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?

2

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

3

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

4

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.

5

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

6

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.

7

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. 

8

The Leeds group has looked - and come to the conclusion that PMR DOES affect hands and feet. Certainly affected mine - and there are a lot of people on the forums who have had similar problems but got a PMR diagnosis.

9

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!

10

I don't know if they have published or whether it was an in-house study. I'll ask.

11

Well something has affected my feet and wrists, goodness knows what else it could be!! Some rheumies do seem to talk rubbish with no basis for what they say. Oh well.

12

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.

13

All of us folk with hand and foot involvement will look forward to hearing more. Thanks so much for being our advocate and making enquiries Eileen. We wouldn’t know the steps to take or have the right contacts. 

14

When you share with  us how PMR has affected you and is still affecting you, it’s reassuring that we’re not on our own. Your lifestyle and attitude are also encouraging.

15

I just always hope the chumps will develop it themselves at some point. And  then get the same sort of response they gave us...

16

Here’s hoping!