Prednisone Induced Myopathy PIM

[alvertta]

Hello GCA buddies. I met with my new rheumy yesterday and she feels I might have PIM. Does anyone have experience with this? I am seeing her in person in 2 weeks. Til then, stick w the current prednisone and cut out the Actemra. Then she will do blood tests to see where I am at. Feeling like there is light at the end of my exhausted tunnel.

[PMRpro Ambassador]

I developed steroid induced myopathy when I was switched from prednisolone to methyl prednisolone - first time in my life I had thin thighs!! When I was switched from the Medrol to prednisone and walked as much as I could - not a lot as I was on crutches for achilles tendonitis, also due to the Medrol - and the muscles went back to normal fairly quickly.

If she thinks steroid induced - why cut the Actemra? Though it is also a rare side effect of TCZ.

[alvertta in reply to PMRpro]

I think she wants to see where I am w just prednisone then decide what next. Good to hear you went back to normal. Yippee!

[AdoptMeow]

I'm most interested to know what symptoms have increased or changed that indicate the additional diagnosis of PIM. I have been on varying levels of prednisone since June 2018. Since trying methotrexate for a month last summer, I have experienced increasing muscle and tendon pain to the level that I can barely stand without support or walk without a cane. None of my doctors know how to address this. I was referred to a sports medicine specialist, but he declined the request and said he couldn't help me. I will be restarting physical therapy next week.

[PMRpro Ambassador in reply to AdoptMeow]

You mean it has persisted despite stopping mtx? I had that in my month trying it but it slowly improved once I said no more. But that also happened to me when they tried to get me to take a statin - within 10 days I could barely walk. Took months to go away although it was a lot better after a month or two.

[AdoptMeow in reply to PMRpro]

The impairment has worsened month by month. Myofascial pain in scalp and face and all over is worse also. I was successful a week ago in begging rheumatologist to up pred from 7.5 to 10 mg, also started leflunomide the first of Feb. Decided years ago to avoid statins.

[alvertta in reply to AdoptMeow]

I started Actemra in October 2020. By the end of November 2020 I was hardly able to walk a block. I consulted my rheumatologist who had no ideas except keep going. My new rheumy suggested the PIM when I described my symptoms. I used to be able to bike, walk, swim. Now I can only swim. I am off Actemra for two weeks so we shall see.

[AdoptMeow in reply to alvertta]

It just seems to me that the loss of mobility could be caused by advancement/damage of the disease rather than blaming it on prednisone. I suspect that small vessel vasculitis has become more painful because I wasn't prescribed ENOUGH prednisone.

[PMRpro Ambassador in reply to AdoptMeow]

I wonder if a new rheumy who will take a fresh look at things might be helpful?

[alvertta in reply to PMRpro]

That’s what I am doing.

[AdoptMeow in reply to PMRpro]

Only two practices locally, and I found the first one to be insulting and useless. I've been considering going back to Duke U or University of Virginia Hospital. The travelling is an added stressor and expense. I think I need a doctor who understands vasculitis and doesn't try to treat PMR as arthritis. I tried a vascular surgeon last year and he just scanned legs, which didn't show any problems.

[PMRpro Ambassador in reply to AdoptMeow]

I don't understand the ones who don't understand the difference between arthritis and vasculitis. And no, a vascular surgeon can't do the basic disorder, just possible long term effects with peripheral vascular disease. Effectively they are plumbers in that context ...

[AdoptMeow in reply to PMRpro]

My current rheumy is the best choice locally, and also the one who said last year that I can't possibly have PMR because it goes away within two years. She insists my diagnosis is inflammatory arthritis, but four doctors before her identified PMR. Very frustrating!

[PMRpro Ambassador in reply to AdoptMeow]

Best of a bad lot - and that isn't saying much!!!! Have you not got a good PCP who would cooperate with one of the better options to save some of the travelling?