Is it steroid myopathy? Or PMR? Or something else?

Posted , 11 users are following.

Hi everyone

I have been on prednisone since Oct 2017.

I am currently on 13 mg a day after having a significant flare at 8 mg and had to go up to 20mg for relief.

I have muscle weakness and fatigue in my thighs and upper arms, drs feel its steeoid myopathy.. I just started plaquenil under the care of a new dr who thinks all my autoimmune issues can be related to undiagnosed Sjogrens ( although my blood work is negative for SS).

So I have 3 questions:

1. Anyone else with weakness in these muscles?

2. Anyone else try plaquenil?

3. Anyone else also have Sjogrens?

Thnx so much

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5 Replies

  • Posted

    I have muscle weakness in my legs and arms. stairs are very difficult now and I am seriously thinking of having a chair lift I keep putting it off and hoping I will regain my mobility???

    I have had a lot of pain over the last couple of weeks and decided on a course of Myofascial treatment (as in a previous post recommended by EILEEN). I have had two this week and I am amazed at the improvement in my pain so long may it last.

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  • Posted

    There is a syndrome called sicca syndrome - same symptoms as Sjogrens but there are no blood antibodies. It seems to happen quite a lot with autoimmune disorders of various sorts. I have dryness and dry eyes but never had any tests - it's been part of my PMR since it started really. Nice to hear some doctors think about it though.

    Myopathy isn't unusual - and one of the recommendations in some guidelines is that we should be given appropriate exercises to reduce the risk of it happening. Once it has happened it can be more difficult to sort out. I have had no problems when I've been on prednisolone and prednisone but for some months I was put onto methyl prednisolone/Medrol and in that time my leg muscles wasted badly. However, once I was switched to a form of prednisone and started walking as much as I could (at the time i was on crutches because of achilles tendon problems) the muscle returned and I have never had a problem since. There is a lady on another forum who developed severe myopathy quite suddenly and she has spent a few weeks in a rehab unit but is now recovering well.

    Plaquenil isn't used a lot to try to reduce pred dose for PMR - there is no study evidence, just some doctors say they like it. It is mentioned in the 2015 Recommendations but not suggested because of the lack of evidence. I hope you have had your eyes checked and then you need regular monitoring.

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  • Posted

    I was on Plaquenil for 1 year and I don't think it did a thing for me. I took myself off it and noticed no negative effects. In my opinion, some rheumys have some "favorite" drugs that they like to toss at anything that falls outside of the normal afflictions they treat.

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  • Posted

    Can only reply to the muscle weakness question and the answer is yes.

    When I finally got to the end of PMR and steroids I found it was over a year before my muscle strength returned to more or less normal but I did get there even though I was, by then, much older.

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