I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22 1:06pm

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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cazwell50 | @cazwell50 | Jun 23 10:50pm

In reply to @johnbishop "I just saw these webinars on the PMRGCAUK website and thought they might be helpful. --..." + (show)

I think exercise is key. You have to push through some pain.

susanew | @susanew | Jun 24 3:31am

I hear you! I started low at 8 mg Medrol. I can only taper down to 2 mg. I tried doing 1 mg. with stiffness. I thought it might just be my body adjusting to a lower dose. Wrong twice! Instead of easing up it just got horribly worse until I was in a flare again. Trying to stop and take no medication seems out of reach. It is very frustrating. When I see my rheumatologist that is definitely something I will bring up. In my case, I am being treated for osteoporosis with Evenity. But I know taking steroids is counterproductive yet I cannot find a way to completely stop without the stiffness.

barracudacool | @barracudacool | Jun 24 5:53am

In reply to @yeb "My rheumatologist is suggesting Kevzara but the potential side effects make me reluctant to try it...." + (show)

I am on Kevzara now. No side effects and it has been a game changer for me.

DadCue | @dadcue | Jun 24 6:00am

In reply to @barracudacool "I am on Kevzara now. No side effects and it has been a game changer for..." + (show)

Actemra was my game changer. For me at least, the game of tapering off Prednisone was finally solved.

mcarso | @mcarso | Jun 25 6:48am

I stopped prednisone over a month ago, Dr put me on hydroxychloroquine; had no symptoms. I’ve been on it for a week so far no relapsed. Dr wanted me to take it as a precaution.

I also agreed that exercise is the key to recovery.

abbeyc | @abbeyc | Jun 25 8:15am

In reply to @susanew "I hear you! I started low at 8 mg Medrol. I can only taper down to..." + (show)

I’m in exact same boat. 3rd time trying to get below 3 mg. I just upped it to 10mg Medrol this week trying to knock it out before I reduce again. So discouraging
I wonder if doctors should be stepping in and helping more when we get to this stage.

abbeyc | @abbeyc | Jun 25 8:16am

In reply to @barracudacool "I am on Kevzara now. No side effects and it has been a game changer for..." + (show)

What dose steroid were you on when you went on Kevzara?

abbeyc | @abbeyc | Jun 25 8:19am

In reply to @mcarso "I stopped prednisone over a month ago, Dr put me on hydroxychloroquine; had no symptoms. I’ve..." + (show)

Great news. My doctor also brought up hydroxychloroquine as future try
What does steroid were you on when you went on it? Did you have to taper off steroid or could you stop cold turkey?

mcarso | @mcarso | Jun 25 8:34am

I started at 20mg in May 2023, tapered off and stopped in May 11, 2024. I didn’t see my Dr. until after being off of prednisone; for around 2 weeks. She recommended the hydro as a precaution due to stopping the prednisone. I will be on the hydro for three months and get a second bone density scan next year. No reaction to stopping the prednisone.

My only issue which I had during the last two or three months of tapering was joint pain in my fingers, which I can live with.

michael826 | @michael826 | Jun 25 11:06am

In reply to @susanew "I hear you! I started low at 8 mg Medrol. I can only taper down to..." + (show)

After three years of polymyalgia, I may be on 2mg. Pred. for the rest of my life. Fortunately, my bones are doing fine…probably due to being active and taking magnesium with calcium. It is battle!