Down to 1mg prednisone and then extreme fatigue sets in.

That's a very fast prednisone taper you've done - five months to reduce from 35mg prednisone to 1mg is most unusual. I'm surprised the pain didn't return sooner at a higher dose. Prednisone withdrawal can cause pain that can be indistinguishable from the PMR pain. Did your doctor order such an unusually fast taper?

I’m on the same taper schedule as you and also on Actemra 1 per month. Next week I’ll be down to 1 mg and after 3 weeks - off prednisone totally. I’m experiencing pain in the AM, brain fog and fatigue all day. I won’t go back. My Doc said I need to tough it out and feel’s that after withdrawal, Actemra will pick up the slack. Fingers crossed. 🙏

Tapering off, 1 mg every three weeks, was the advice of my doctor. I now have an appointment with him next week. I upped my dose to 3mg and am beginning to feel less pain. If I have to stay on that, so be it. There is a waiting list of a year before I can see a rheumatologist.

Hey @boo3
Sorry to hear you went from tapering down to 2 then back up to 14. I’m currently with my second bout of PMR, approximately 10 years apart. Been on prednisone for two years now, which was my tapering time to be completely free of it 10 years ago. I am now on 5 mg this month, but was down to 2 in December until I had 3 excruciating days which brought me back up to 10. Have been tapering 1mg/month since February. Starting in July I will take @megz advice and taper .5mg/month using her schedule as well, and hope for the best. I wish everyone suffering with these symptoms all the best in their road to recovery!

I had exactly the same problem with my hands, wrists and knees Was told it was OA, then RA but blood test don't support. I couldn't make a fist anymore or even button my clothes. I was put back on Prednisone 10mg for one month, then alternated 10 mg/5 mg every other day for two weeks. Now at 5mg for a month. I have some bad days that 1000mg have been able to work for the pain. Rheumatologist still has no explanation for the hand/wrist swelling and pain.

I had exactly the same problem with my hands, wrists and knees Was told it was OA, then RA but blood test don't support. I couldn't make a fist anymore or even button my clothes. I was put back on Prednisone 10mg for one month, then alternated 10 mg/5 mg every other day for two weeks. Now at 5mg for a month. I have some bad days that 1000mg have been able to work for the pain. Rheumatologist still has no explanation for the hand/wrist swelling and pain.

chpfireball… same here. As I posted in another string I was actually able to get down significantly from my starting point of 20mg but then found that my hands, knees and one wrist in particular hurt almost as bad as shoulders and hips did in the beginning.. Doctor originally stated that that was plain old osteoarthritis but one month later when I had had enough asked again and was told it COULD be PMR. So I upped the prednisone by 10mg’s and for most part pain has significantly subsided in hands and wrists. So what I was told was as probably OA could be PMR. Hoping to become better educated by belonging to this group.

chpfireball… same here. As I posted in another string I was actually able to get down significantly from my starting point of 20mg but then found that my hands, knees and one wrist in particular hurt almost as bad as shoulders and hips did in the beginning.. Doctor originally stated that that was plain old osteoarthritis but one month later when I had had enough asked again and was told it COULD be PMR. So I upped the prednisone by 10mg’s and for most part pain has significantly subsided in hands and wrists. So what I was told was as probably OA could be PMR. Hoping to become better educated by belonging to this group.

Diagnosed in December by GP and he put me on 20mg of prednisone and relief was almost immediate. Over last six months have attempted to wean to lower doses, but found that I may have tried too soon. Original excruciating pain in shoulders and hips went away but then pain in hands, (fingers and wrists) and knees. Questioned rheumatologist about that and was advised that it was probably OA so I continued my weaning thinking that new pain was not related to PMR. WHEN I GOT TO ABOUT 2mg and realized pain was a bit over the top reached out again and was told that though PMR does not generally attack the hands and knees it was possible that it was the cause of that pain. Huh? Anyway back up to 14mg with lots of relief. Posting this so those new to PMR and prednisone can see that though our doctors are good they are still practicing and using this forum is probably the best way for all PMR people to make good judgements on their own and for themselves.

Do you have regular blood tests to check inflammation markers? Two of the main inflammation markers for PMR are C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). Most people (not all) will see a rise in CRP and/or ESR when PMR pain is present. Uncontrolled inflammation can harm the body. Don't let your doctor flick you off without investigating things properly.