Prednisone tapering is challenging. What does remission feel like?

Hi Mickie @njtodctode, It does sound like you may be tapering down too fast. My rheumatologist always told me everyone is different and you have to listen to your body and taper slowly. He also gave me scripts for the 5, 2.5 and 1 mg tablets which made tapering by smaller amounts easier. I only went down by 5 mg at the first taper and then my pain level was around a 1 or 2 when I first got up in the morning before taking the prednisone dose for the day. I only tapered down if my pain level was a 1 or 2 which is subjective for each of us and why I think it helps to keep a daily log so you can compare it day to day.

Some members have mentioned splitting the days dosage into a morning and afternoon/evening which I never did but think it could be helpful depending on your pain level during the day and night.

If 20 mg gave you fast relief and 15 not so much, I might try splitting the difference to see if that brings you relief at 17.5. I would definitely keep a daily log so that you can compare which can be difficult if you are constantly in pain. Slow wins the game when you are tapering down on prednisone.

Psst...I might also have a chat with my doctor on a tapering plan based on how I feel and not a timeline to get off of prednisone. The whole reason for prednisone is to address the pain. Hoping you have a pain free day!

Thank you so much. I might start over at 20 to see if everything goes right like it did at first then go to 17.....
My pain is mot bad in the am. It gets worse mid day and late afternoon. Back pain is spasms...so if I don't do a lot I'm ok but I can't keep doing nothing. Anyway I think it will be a good idea on the tracking....very good. Thank you John. You all are making life easier for sure.

Gosh Mickie, I can see you are overwhelmed and I understand why you don't want to go out. I've been there. (At one time, I was afraid to be too far from the bathroom!) I'm not a doctor so I won't give medical advice, (although I do have a medical background), I can only give my experience with trying different things. Who is following your fybromyalgia? Your rheumotologis or your primary? It does'nt sound like your pred dose is right and I agree, many rheumies seem to want to rush through the coming off phase. Mine does. I ask because you may be a candidate for Low Dose Naltexone use. Studies have shown that there seem to be 3 autoimmune diseases that it really helps. In order or help is Crohn's, fybromyalgia and MS. For me, I have Crohn's and it was a game changer. I am now in remission. After 45 years, I had a normal colonoscopy and the ulcers (which were just visible in my small intestine) were healed. The LDN was the only thing different. I had asked the rheumy that I had for 4 years who didn't recognise the PMR for it because I was in constant pain, even when I didn't move. Related to the PMR? I don't know, but it worked in two days after starting LDN. I still had the PMR muscle pain, but only when I used my muscles. And then, it healed my small intestine, which took about 2-3 months. I gave up on that doc and got a new one who saw what was wrong in 15 minutes. Go figure.
Anyway, read about it and if it seems right for you, ask your doctor. It will have to be compounded and your insurance won't pay for it and you can't use it with opiates. It will interfere. The only side effects are vivid dreams which fade. I pay $50 a month for mine and won't do without it. For now, I got "permission" from my PT doc to do floor exercises on the couch or bed because it is hard for me to get down and up. I bet you can, too. Check the internet for excercises for back stretching at least. But nothing too fast or hard at first. Hang in there. I know, I have a tendency to tell anyone remotely medical my symptoms in the hope they will add insight. Sometimes, they do. So don't give up. Stay in touch with us, we care and some of us have been where you are.

@njtodctode, I concur with John’s direction above. I have degenerative disc disease along with PMR and honestly didn’t believe my PMR diagnosis. I have significant back spasms and believed that it was more of a reflection of DDD than PMR but my rheumatologist gave me some printed research that indicated that many people have back spasms as part of PMR. I have also been informed that some people are just more aware of the spasms and can distinguish them from other pain. I think that is likely true for you and I. I had initial relief at 15mg but pain returned and I had to bump up to 20 mg and ultimately to 25mg to get relief. After 2 weeks at that level I was able to taper down to 22.5 and now at 20 mg. I taper to 17.5 mg tomorrow. Prayers for relief, peace, and direction for you!

Sandiw77. Thank you for your reply. That is perfect information for me right now. As you can tell from my constant whining I have been so confused. But after John's info and this posting from you I think it is PMR especially since it's muscle pain and it also is effecting.my hip area
..but not joint pain. I might need to try 20 or even 25 just to test and see. But it is so helpful to get specific info and support. I know I can eventually manage this...I have managed 5 other conditions for years. This one is so different and the treatment not the easiest to tolerate at higher doses. I had been on 3 mgs for 11 years before this coupled with placquenil for RA with no side effects so..
Anyway? I am grateful.for your help. I will do some testing. Be well. Mickie

I am so glad that my comments were helpful. I think the collective info and experience of this group has been very beneficial to me and come here for inspiration and encouragement. I am relatively new to PMR (diagnosed in May 22 started Prednisone in June) so I am still learning from discussion. I have already passed tapering info to my rheumatologist from these threads so I am grateful. Hang in there, we are all rooting for each other. Blessings!

We are on the same schedule....I was sick for about two months before then and reached my tolerance level. Hopefully both of us will hum along with the help of this site for sure. Take good care! 👍 🙏 👌 🌺🌼🌻

Hi all. I went to MY PC doc yesterday and all we talked about was PMR and the struggle of pred dosing and symptoms. I was on 16 mgs for weeks and decided to.go up to 17.25. One pain issue is tame now but others are worse. Fatigue and spaciness is same. I can't do much of anything. Arrrrggggghhhhh. So...he suggested I try dexamethasine. He said he has had patients who did well on it. I saw that it's stronger. I don't have to do it obviously but....any thoughts, info, concerns, experience please let me know. Also...does anyone else have HUGE ankles from PMR? ok thanks everyone. Take care of yourselves.

I had huge ankles with my first bout with PMR but the right ankle was the worst. They said I had gout in the ankle and gave me an RX for colchicine which got rid of the swelling. I would discuss the swelling with your doctor. I think some minor swelling might be expected with PMR but if the ankle is really big it could be something else.

Ok. Hmmm. It started when PMR hit..but at this point nothing would surprise me. My hands are swollen again as well.
Any thoughts on using dexamethasine?