Flare

Thanks for your input. I get the strange cramping but also the inability to articulate my joints, such as crouching down and standing back up . It's as though the message isn't getting to my muscles.. if I stay on the prednisone it's okay. Appreciate your response

Yes, I thought the rules might be different in the UK. However, I am going to discuss the information you sent to me and ask my doctor if there is anything similar she can prescribe as I struggle to believe when anyyone is on prednisolone as long as I have been, and in all likelehood, will have to be on it for life, that there is nothing they can do. I will also do some research into this in the UK.
The information you sent is very encouraging as it is so good to hear that you managed to get off prednisolone after such a long time. I really like this forum as I learn so much from it. Thank you again.

I have the same pain, almost as though I ran a marathon! I’m on 10 mg of prednisone, and trying to taper to 7.5 this week. This is an unbelievable condition because most people never heard of it (as I hadn’t) and it sounds like it’s a mental thing. Until you have this. Instant pain that debilitates, you just don’t understand it. I was playing golf one year ago and now I can’t walk 100 ft!

I hear ya. My friends/family are confused with PMR, since they've never heard of it. Fortunately, they know it's not a mental thing. Before I acquired it, I was that person going 110 mph. I was diagnosed with PMR and GCA the end of July 2024 and was started on 60 mg prednisone. A month before then, I would spend a couple of hours doing yard work, then had to spend the rest of the day in my recliner. I'm a golfer too. I couldn't get down to pick my ball up without severe pain. In September, I was able to start golfing 9 holes. That was my limit before major fatigue set in.

I've been able to taper to 8 mg. When I got to 20 mg., my rheumatologist told me to step down 1 mg. every two weeks. That worked until I got to 8 mg. (which I'm on now). I'm going to slow down the taper. From what I've learned in this group, once you get to lower doses, it's best to increase the time with your step down. I also started taking 3 mg. at bedtime and 5 at lunchtime. I notice, I don't wake up so achy, as when I was taking the entire dose in the morning.

There's some good discussions in this group regarding 'tapering'. Good luck to you.

I did modify my Prednisone dosing schedule earlier this week. I now take 3 mg at bedtime and 5 mg at lunchtime. It's made a huge difference in my morning aches and pains. I also started 'earthing' last Friday. (There's a discussion on Earthing/Grounding in this group).

I would describe it as aches and weakness, or Aches and Pains if anyone asks. My experience is maintaining range of motion and continuing to exercise at a lower rate is very helpful. Stretching and range of motion I do every day and my physical therapist taught me a bunch of simple exercises for gently working the muscles in my legs.

I am about six months into PMR. Started at 15mg prednisone got down to 5 too soon and am now bumping along at 8. Age 65 Male and generally very active.

I’ve avoided all biologics, opting for prednisone at a very low dose. Reduced gluten and no more dairy to try to reduce inflammation. What’s your PMR story?

reets70:
Have you had SED and/or CRP testing to see if your PMR is considered to be in remission ? If it is not, I would be questioning why you are tapering at all. Even if it is in remission, dropping 2.5 when below 10 has been reported to cause problems for many patients on here. I would be questioning the size of that drop. Best of luck sorting this out.

My PMR story is long and rather sad since I took prednisone for more than 12 years to treat PMR. I can't honestly say that Prednisone gave me a better "quality of life" although it did help the pain. I went into PMR rating my 'overall health" as excellent. After 12 years of PMR and daily prednisone, I rated my overall health as "poor." I didn't want to live much longer and I was only 65. I was thinking 5 years of retirement and I would call it quits and probably go into a nursing home.

I'm now 70 and my bucket list is getting longer. I'm traveling and thinking about what else I can do. In my opinion, the "rate your pain from 1 to 10 scale" doesn't tell the whole story of having PMR and being on long term prednisone.

After Actemra was started, I was able to taper off prednisone. I now have tolerable pain without any pain medications. My rheumatologist says Actemra isn't a pain medication and only treats the inflammation.

In any case, I now rate my overall health as "good and getting better." This is a subjective rating but there is objective evidence too. I have been able to discontinue Prednisone AND almost all my other medications that were basically treating my prednisone side effects or preventing side effects from happening.

I was regularly going to the ER and being admitted into the hospital. My referrals to various specialists were increasing. Now, I just see my rheumatologist every 6 months.

Unfortunately, my inflammation markers increase whenever I go too long between Actemra infusions. I haven't been able to discontinue Actemra but I have minimal if any side effects from Actemra so far. I still worry about the long term effects of Actemra but nobody seems to know what happens in the long term. Technically, I still have PMR.

I was tapering from 15mg prednisone, going good til I hit 5 then had to return to 7, went t kevzara, now that is all I take, until this cost hike!