Anyone have discomfort or pain when tapering off prednisone?

I was diagnosed with PMR
Oct 2023
I started a 15 mg prednisone treatment and reduced 1 mg every 2 weeks. I am now on 5mg and my inflammation levels are up and I’m experiencing a lot of pain. Dr wants me to continue taper with 5 mg for a total of 4 weeks, then 4mgs for 4 weeks etc..
I’m 74 and I have arthritis after running for 40 years
I’m trying to stay active. Not walking but biking is doable
Tylenol arthritis is what I’m taking, nsaids I’m not able to take because stomach issues
Any other recommendations would be helpful!

I dont remember the thread. I have only been on here for a couple of weeks. But a pretty lengthy discussion of over 70 "will it ever be the same". We all seem to have been fairly or some extensively active prior to PMR. Your example shows a continued desire to be "where you were". The steroid did trick us into being somewhat normal. However, the overwhelming response was life after PMR does not appear to be quite as responsive. Few aches and pains. Everyone did agree as time goes on they did improve. This group was also off of prednisone. Your almost there but not quite. Any amount makes a difference. It took several weeks for me to feel "normal" but we all agreed it is a new normal. As some said. First time you have been 77 also. For me 72.

I think it's another form of prednisone from what I could tell.

I can try to help. Just my info from here and google search. I have not taken Kevzara. There are a couple of drugs that can now be used for PMR inflammation. Kevzara and Acterma. Both are IL-6 inhibitors. Acterma works better with GCA. Since cortisol production is causing your inability to taper due to steroids, these biologics are being added to help prevent PMR flares. This helps with your steroid taper. However neither of drugs will work if its not PMR. They also do nothing for cortisol. So your pain most likely will persist when trying to taper. Others on here have said just that. Drug was not helpful. Many have also said their liver function tests were troublesome. Others have said its expensive and not easy to get. Next to an immune blocker like Methotrexate I have not seen where much else works but a very slow taper. The problem is your body producing cortisol.

Thanks for the info. I am already taking methotrexate weekly.

your Dr must be concerned enough with your inability to taper that he/she plans to throw the book at it. Put you on an immune blocker as well as a PMR drug. This should totally overload your system to prevent flare ups. Dr probably then plans to wean you off the other drugs. None of this helps if you can not get your Pituitary to start cortisol. At that point they just leave you on a low dose such as hydrocortisone and treat all your other symptoms. Like diabetes, high BP, cholesterol, osteoporosis on and on.

I hope someone can help me. I can't see my doctor for three weeks. I am on 5 mg of prednisone and experiencing EXTREME weakness. The magnitude of it scares me. I want to get off Prednisone so I don't want to up dose but in the meantime I am turning into a vegetable. I don’t want to live like this. My life is essentially over. I have been to the emergency room and everything checks out except slight dehydration and should eat more. What should I do? Decrease prednisone to get adrenals working again and face consequences. I know all about cortisol levels and adrenals. This horrible debilitating weakness is ruining my life. I don't look sick but am really suffering as I don't know what to do.

These social media sites are more to help exchange information. What we all have found is we are all different and different approaches work completely different between us. I have been here for 2 weeks and gained so much knowledge from this group. But probably none of us are equipped to say one thing vs another is the right approach. The medical field has just as much trouble with that. A medical team would have all your history and how much prednisone you have been on. How long you have been fighting PMR. Lots of information that leads them to a helpful answer. Here is what seems obvious to me. You are not ready to feel this devastated from the taper of prednisone. Cortisol production is life saving requirement for the human body. Your body has to have it. It could be very dangerous. If you were feeling better at a higher dose then I would go back to that dose. Go higher if you have to. Wherever your feeling more yourself. As they say "rome wasnt built in a day". I think you have a grasp of cortisol and how it works. So basically I do not think your ready to lower your prednisone dose even farther at this point. I would go back to emergency and continue to seek medical help if necessary.

@tuckerp On prednisone since 2023. Started at 20 Mg down to 5. It brought on diabetes and they would like me off it. Thanks so much for reply. They sent me to rheumatologist who put me on methotrexate. Just saw her and she said tests show it didn't help. I had been off it for 3 months after minor surgery. Tried it last week but seemed to make it worse. But thanks again. I will try to up Preda little amd see what happens.

I just started on Kevzara. I did my research on it including reading the report of the phase 3 clinical trials. Yes, there is a rare side effect of the bowel which my rheumatologist explained to me. I don't have any known bowel issues. I also had to have a special test for tuberculosis. The drug hasn't been around very long and it does affect the immune system so there could be a cancer risk. This is all explained in the drug literature. I decided that it was worth the low known risk. I have been on prednisone over 2.5 years. Methotrexate initially helped me to reduce my prednisone but then did not seem to help and I had side effects, including elevated liver enzymes. I also did not like the way the methotrexate made me feel. I was taken off the MTX as soon as I started the Kevzara. I feel a lot more "normal" after 11 days on the K. I'm glad to be off the MTX. So far, so good. Will report back if I have problems.