Adventures in decreasing prednisone

[Linny3]

I have been decreasing pred using very slow method for about 6 months, after being on pred for 6&1/2 years at approximately 15 mg daily.

Everything was going wonderfully. First time ever I had been able to reach 7 & 1/2 mg daily.

Other than being a little more tired I felt good. Then one morning I woke with the worst pain ever in my neck and arm. I have not had that kind of pain since I was first diagnosed. It is a pain that nothing helped, it felt deep in the bone.

I started raising my pred slowly, trying not to take more than I need. Looks like 17mg is the magic amount to clear the pain, but not totally.

What a bummer😟😢

I really thought that maybe the pmr had started to dissipate. Guess not. As many of you know it is very frustrating and discouraging. I feel desperate to get off the steroids as I have many side effects. Osteoporosis with fractures, newly found diabetes, high cholesterol (new), , cataract (new)

Blood vessels that break very easily, and new kidney issues. All in all this disease and treatment has done a number on me.

My question is, I have been above the 7-7&1/2 mg for 8 days. As I said now at 17mg but not total pain control, if I need to stay at this level for another week, do I need to start the whole slow process from scratch?

Thank you for any thoughts on this.🙂

[DorsetLady PMRGCAuk volunteer]

The usual advice for dealing with a flare is contained in this link -and really don’t usually recommend you stay at increased dose for longer than 14 days..then you don’t need to start from scratch.

But would suggest you step down in at least 2 steps, maybe 3 rather than sometimes when it can be one.

So 14 days in total at 17mg -[hoping that does it] - then maybe down to 14mg for 5-7days, then 11mg for same time, then to 8 or 9mg [no lower] for 3-4 weeks and get really stabilised before you restart taper proper.

healthunlocked.com/pmrgcauk...

[Linny3 in reply to DorsetLady]

Thanks so much for the reply

[PMRpro Ambassador]

The pain is just on one side? Are you sure it is PMR itself or an add-on like myofascial pain syndrome?

[Linny3 in reply to PMRpro]

I don’t know, except when I take the 17mg it clears out. Anything less and it comes back. Nothing else helps not pain reliever, rubs or message or heat or ice. This is the pain it all started with 6 years ago😟😡

Thanks for your response

[PMRnewbie2017]

My initial thoughts were the same as PMRpro. As I see it that's a huge jump in dose and 17.5mg Pred will mask all sorts of things. Have you tried Paracetamol? It's very underrated as a pain killer especially at the max daily dose of 2tabs every 6 hrs, max 8 in 24 hrs.

[Linny3 in reply to PMRnewbie2017]

thank you for the reply. I must have forgot to mention that I take 6 five hundred mg tablets of Tylenol daily. I take them for severe back issues due to fractures. They don’t touch this new pain.

This is just so frustrating. I thought after all these years I was finally able to lower my pred significantly . I was doing everything great and was so excited to be down to 7mg.

Though the pain in neck and shoulder is so much better it is still there. Trying to decide when to try and drop to at least 16& 1/2 mg pred.?

[ab58sf]

I know how discouraging tapering can be. I was at 1 1/2 mgs and doing well. Had 10 pain free days. Then I went to 1 mg and the pain came back with a vengeance.

I am going back up to 2 mgs for a while. It is so wonderful to think you might be in remission, but the stark reality hits. I pray for remission, but we have to keep on to control the pain and disease progression. Have you tried hydroxychloroquine? Might ask your doctor about that. I did OK on it until I took a second dose in error one day and it make heart palpitations. I think that was my fault.

[Linny3 in reply to ab58sf]

thank you for the reply. Yes I have tried that along with three others. Just didn’t work for me.