How to address PMR pain while decreasing prednisone

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Hi everyone,

It’s time to open a new group dedicated to Polymyalgia Rheumatica (PMR).

All discussions related to PMR can now be found in the PMR group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/

+Follow the Polymyalgia Rheumatica group and continue to connect with others and share your experiences, ask questions and encourage each other.

I am a 65 year old female diagnosed with pmr in October of 2019 after suffering through shoulder pain and 2 frozen shoulders stating in March of 2019, lower back pain in April along with whole body stiffness and pain. I was put on 20mg prednisone and have tapered down to 8mgs. Everytime I go down to 7 mgs I get in terrible pain all over. I have been yoyoing between 7mg & 8 mgs since May 2019. I read in a book a new way to taper down. Instead of dropping 1 mg per month, you start the next month with 6days of 8mg then 1 day of 7mg, then 5 days of 8mg and 2 days of 7mgs etc, etc. using this new method of tapering down, for the month of February, I am finding on the day I go down to 7mg, I am in terrible pain for the day until I take 8mg the next day and then feel better. Was wondering if anyone has had trouble tapering from 8 to 7 mgs. Also, in September 2019 I did get down to 6mgs, but my hands starting cramping up -hard to open in the morning, can't straighten them out fully anymore. This starting happening before I got on the prednisone, but when I got on 20mgs, my hand problem went away. My rheumatologist says that my hand and back problems have nothing to do with pmr. When I did get back up to 8mgs for a while, my hand problem did get better, but still can't straighten them out. Also, when I got to 6mgs I got terrible weakness in my wrist and arms making it hard to open windows, or carry anything weighing more than 5 lbs etc. Was wondering if anyone has experienced these problems and was hoping to get some advise about what to do, or is this normal and I will be on prednisone a lot longer than I had anticipated? Thank you, SueMck

I am a 65 year old female diagnosed with pmr in October of 2019 after suffering through shoulder pain and 2 frozen shoulders stating in March of 2019, lower back pain in April along with whole body stiffness and pain. I was put on 20mg prednisone and have tapered down to 8mgs. Everytime I go down to 7 mgs I get in terrible pain all over. I have been yoyoing between 7mg & 8 mgs since May 2019. I read in a book a new way to taper down. Instead of dropping 1 mg per month, you start the next month with 6days of 8mg then 1 day of 7mg, then 5 days of 8mg and 2 days of 7mgs etc, etc. using this new method of tapering down, for the month of February, I am finding on the day I go down to 7mg, I am in terrible pain for the day until I take 8mg the next day and then feel better. Was wondering if anyone has had trouble tapering from 8 to 7 mgs. Also, in September 2019 I did get down to 6mgs, but my hands starting cramping up -hard to open in the morning, can't straighten them out fully anymore. This starting happening before I got on the prednisone, but when I got on 20mgs, my hand problem went away. My rheumatologist says that my hand and back problems have nothing to do with pmr. When I did get back up to 8mgs for a while, my hand problem did get better, but still can't straighten them out. Also, when I got to 6mgs I got terrible weakness in my wrist and arms making it hard to open windows, or carry anything weighing more than 5 lbs etc. Was wondering if anyone has experienced these problems and was hoping to get some advise about what to do, or is this normal and I will be on prednisone a lot longer than I had anticipated? Thank you, SueMck

Hi @suemck, Welcome to Connect. I had trouble tapering off of prednisone for both occurrences I had with PMR. I cut my 1mg tablets in half and went down by 1/2mg when I was still having pain issues with the PMR. I did live with a little pain, maybe 1-2 on a scale of 1 to 10 which helped me finally taper off. The first occurrence took my 3 years to taper off. The second time I was able to taper off in about 1-1/2 years.

I have no medical background or training but I do have similar symptoms with my hands. I was diagnosed with severe carpal tunnel syndrome in both hands. When diagnosed I was told they could do surgery or try a shot. I think that was 2+ years ago. I had the shot but it really didn't help. Now I'm having the symptom your are having not being able to straighten my hands in the morning...mostly the middle finger on my right hand. I'm thinking this may be Dupuytren's Contracture but I haven't been to the doctor yet to find out. I have my regular checkup in March so will be discussing options with my doctor if it is indeed the issue.

Don't give up on the tapering. You just have to take it one day at a time. Have you made any changes in your diet to help? Here's some ideas.

Medical News Today - What to eat if you have polymyalgia rheumatica
-- https://www.medicalnewstoday.com/articles/321683

Hi@suemck, I was diagnosed in July 2018 and have been trying to taper down for the last 6 months from 5mg prednisone, it has gone in swings and roundabouts, the method I have used is reducing by 1mg per month once I was down to 10mg, I have got to the 1mg and found it really difficult to just stop as I get a flare up, so what I tried was reducing by days, I took 1mg every day for 2 weeks, then 1mg every alternate day for two weeks and I am now up to 1mg every 4 days. I cannot say I am pain free but it is bearable and subsides over days. I had my CPR level and it is down to 3 so hopefully in a few weeks all going well I can stop completely. I also have had strange pain reducing the prednisone, my knees are very sore and my feet ache, feeling of sharp tingling and heat in my legs, plus my body aches like the flu but not all the time. Think this may be related to my thyroid problem. I wish you every success in getting off the prednisone, but you also have to listen to your body and reduce when you feel the best, its no fun being in bad pain, my original plan was to be off prednisone in a year, but realise now that you also have to be sensible I have found this site a great place to get support and information as there is so little known about PMR and have had very little help or understanding from people around me apart from pills from my Doctor, so being able to talk to like minded people is a god send. Best wishes for a speedy recovery Linda.