PMR coming back?

Posted by ayjaydee @ayjaydee, Aug 11 3:45pm

I've been on between 1 and 2 mg/day of prednisone for the last few years but recently I have been getting pain in the shoulders and upper back and I'm afraid the PMR is returning. Perhaps the stress from everything going on these days. I have a bunch of 5 mg pills left over and am considering trying to up the dose and see what happens. Any suggestions on how high I should go? 10 mg/day?

Hi @ayjaydee, I would discuss any changes with your rheumatologist but if it were me and I were currently taking 1 or 2 mg per day of prednisone, I would cut the 5 mg pill in half and try just going up to 2-1/2 mg per day before doing a bigger dosage. If you go to a higher dose, it could also be harder to taper off when you get to feel better. The long term goal is always to taper off of prednisone if you can (in my humble non medical opinion). Still, I would discuss your plan with your rheumatologist.

You may want to post your question again in the previous discussion where you were posting before – more people follow that discussion and will see your question and be able to share their thoughts or suggestions with you. Here's the link to the discussion…
Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19: https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/

Reading through your previous posts it looks like you never really were tapered off of prednisone. Is this right? Did you ever get off of prednisone or did you continue to take 1 or 2 mg/day when you were feeling no symptoms of pain?

REPLY

I went down to 1 mg/day with no symptoms of pain and really dont know why i didnt try that last 1 mg drop. fear perhaps? I figured 1 mg was pretty benign.

REPLY
@ayjaydee

I went down to 1 mg/day with no symptoms of pain and really dont know why i didnt try that last 1 mg drop. fear perhaps? I figured 1 mg was pretty benign.

Jump to this post

I agree with John that you should try 2-3 mg. You can go to 5 if you don’t get relief, but the best rule of thumb is to take the minimum amount that is necessary to eliminate your pain. With long term success at 1 mg until now, you may find that doubling it is enough.

REPLY

I agree with what was said. I WISH I could get down to 2 mg.! Have been on Prednisone for 2 years
Also have GCA. I get down to 7.5 mg, then I have a flare, EVERY time. Rheumi has tried biologic, but I couldn't tolerate. Have kidney disease so have to be careful what I take. Does anyone else just keep getting PMR every time they taper? I'm so frustrated.

REPLY
@valb68

I agree with what was said. I WISH I could get down to 2 mg.! Have been on Prednisone for 2 years
Also have GCA. I get down to 7.5 mg, then I have a flare, EVERY time. Rheumi has tried biologic, but I couldn't tolerate. Have kidney disease so have to be careful what I take. Does anyone else just keep getting PMR every time they taper? I'm so frustrated.

Jump to this post

@valb68, Don't be discouraged and keep taking it one day at a time. My first time with PMR it took me 3-1/2 years to taper off of prednisone and be relatively pain free. Have you tried tapering down 1/2 mg at a time and go for a week at that dose and if you can tolerate the pain try another 1/2 mg reduction. If you have the 1 mg tablets, they are easy to split.

REPLY
@johnbishop

@valb68, Don't be discouraged and keep taking it one day at a time. My first time with PMR it took me 3-1/2 years to taper off of prednisone and be relatively pain free. Have you tried tapering down 1/2 mg at a time and go for a week at that dose and if you can tolerate the pain try another 1/2 mg reduction. If you have the 1 mg tablets, they are easy to split.

Jump to this post

Thank you for your reply. Yes, I have tried tapering 1/2 mg. at a time (several times). I have spinal stenosis, and when I have a flare I can barely stand up, let alone walk. It seems like my whole body gets inflamed at once. What have you tried in addition to prednisone? Because of my stupid kidneys, I can only take Tylenol for pain (better than nothing!). Have you taken a biologic?

REPLY
@valb68

I agree with what was said. I WISH I could get down to 2 mg.! Have been on Prednisone for 2 years
Also have GCA. I get down to 7.5 mg, then I have a flare, EVERY time. Rheumi has tried biologic, but I couldn't tolerate. Have kidney disease so have to be careful what I take. Does anyone else just keep getting PMR every time they taper? I'm so frustrated.

Jump to this post

What biologic was tried?? The only biologic that I'm aware of and the only one that is FDA approved for GCA is Actemra (tocilizumab).

I was diagnosed with PMR in 2008 so 12 years ago. I was also diagnosed with inflammatory arthritis. During the entire time, I rarely was able to get down to 7.5 mg. My memory of my prednisone dose was in the range of 20-30 mg for 5 years until I was able to maintain a range of 10-20 mg for a few more years but I had many flares. Finally I was able to maintain a steady dose of 10 mg. Anything less than 10 mg involved pain but I don't know for sure if it was PMR pain. I suspect adrenal insufficiency was a problem around the 7.5 mg dose. It is said that pain associated with adrenal insufficiency mimics PMR pain. I'm aware of countless people who encounter problems at the 7 mg level.

In early 2019, Actemra (tocilizumab) was tried and I breezed through the 7.5 mg dose. I tapered quickly to 3 mg and was told to hold at that level for a few months. Adrenal insufficiency was confirmed but it was not as bad as was feared. I eventually tapered down to 0mg for five weeks until I had flare of uveitis which is associated with inflammatory arthritis. A different biologic (Humira) was tried but PMR symptoms returned. Actemra (tocilizumab) was restarted and I have been off prednisone for the past 3 months.

REPLY
@valb68

Thank you for your reply. Yes, I have tried tapering 1/2 mg. at a time (several times). I have spinal stenosis, and when I have a flare I can barely stand up, let alone walk. It seems like my whole body gets inflamed at once. What have you tried in addition to prednisone? Because of my stupid kidneys, I can only take Tylenol for pain (better than nothing!). Have you taken a biologic?

Jump to this post

@valb68 I have not taken a biologic, probably because it hasn't been needed for me. Shortly after my second round with PMR I started looking into lifestyle changes. I read a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms – https://terrywahls.com/about/about-terry-wahls/. So I have tried to focus on reducing or eliminating processed meats, sugar, fast food, and fried foods which I think helps with any autoimmune disease. Here's a link you might find helpful – What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Have you tried making any lifestyle changes to see if it helps with the PMR?

REPLY
@johnbishop

@valb68 I have not taken a biologic, probably because it hasn't been needed for me. Shortly after my second round with PMR I started looking into lifestyle changes. I read a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms – https://terrywahls.com/about/about-terry-wahls/. So I have tried to focus on reducing or eliminating processed meats, sugar, fast food, and fried foods which I think helps with any autoimmune disease. Here's a link you might find helpful – What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Have you tried making any lifestyle changes to see if it helps with the PMR?

Jump to this post

I am currently in a program at the VA in Iowa City that was initiated because of Dr. Terry Wahls success story. I have read her book and attended one of her talks. Her success story is truly remarkable. I believe diet alone can be a powerful treatment but her discipline when it came to diet changes is hard for me to duplicate. I have changed my dietary ways but it still seems like a biologic has made a big difference..

REPLY
Please login or register to post a reply.