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

My guess is that "extreme fatigue" is very common as we decrease our prednisone dose. I suspect it has more to do with adrenal insufficiency and a low cortisol level than PMR. You tapered your Prednisone dose in less than 6 months which is great. However, if it is adrenal insufficiency your adrenals will have their own timetable for how quickly they produce cortisol again so that you are able to taper off Prednisone.

I have been calling it secondary adrenal insufficiency. Both primary and secondary adrenal insufficiency are rare.

Corticosteroid induced adrenal insufficiency is common.
https://jamanetwork.com/journals/jama/article-abstract/2835391
-------------------
Some people will suggest that PMR causes fatigue. That is probably true but not to the extent as when your cortisol level is too low. It doesn't really matter because more Prednisone and a slower taper is what is recommended. Unfortunately that approach prolongs the time you need Prednisone.

The following link looks at this problem from the perspective that endocrinologists might have.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
---------------------------
Cortisol is the hormone in our bodies that regulates inflammation. Cortisol also regulates other things. A cortisol level that is too high or too low isn't a good thing to have. The following link has a good pictorial of the symptoms of both high and low levels of cortisol.
https://my.clevelandclinic.org/health/articles/22187-cortisol

It sounds to me like you tapered too fast or too far. If you felt good at 2 mg, you could try to go up to 7 mg (2 mg + 5 for relief) and stay there for a couple of weeks. Then you could taper back down to 2, maybe in 2.5 mg steps, and when you get to 2, stay there for a month. Then taper in half milligram steps, where you stay at each level for a month. Or you could check with your doctor and see what he/she thinks ...

I just stepped down to 2 mg today, and I'll be at this dose for a month. I'll step down to 1 mg then, but I'm also taking Actemra.

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.

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?

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!

btw, I also have been in more pain in the early morning so the last few days I’ve been taking 4mg in the morning and the other 1mg before bedtime, and morning pain is a little more under control now. Will stay with this approach while tapering and see if I have continued success.

As I tapered at 0.5/month to somewhere around 3, I developed hand and wrist pain. Mild OA was diagnosed using x-ray. The OA had been previously completely masked by my normal cortisol production.
Now off of P for almost 4 months, and experiencing no hand/wrist pains.
Good luck.

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’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. 🙏