How to address PMR pain while decreasing prednisone

I too, was diagnosed with PMR in December. I am down to 5mg, for 2 weeks, and hope to go down to 4.5 soon. I am a little apprehensive, still a lot of stiffness in legs, although twice this week I have improved walking distance. This may not be a good time to expect too much as this is the hottest month of the year, and hotter than usual, about 100 degrees F. One whole mg. seems a drastic drop for you to do at that low stage. Lots of Luck from an Aussi in the Texas hill country.

I was put on 30mg prednisone for one week, then went to 20mg for a week and then the dosage was lowered each week /month over 9 months. As well my rheumatologist has me on 200mg hydroxychlorquine sulfate. I was on 2 a day and went back to one a day. After 2 years felt poly was returning and went back to two a day. So far seems to do the work. Have CRP tested every 6 months with regular blood work. When first diagnosed it was 47.

Hi @kirby, Welcome to Connect. Thanks for sharing your PMR journey with us. It can be a difficult one. My PMR is currently in remission. The first occurrence lasted 3 years before I was able to taper off of prednisone. After a 6 year remission it came back and I started on 20 mg prednisone again and was able to taper off in 1-1/2 years. I'm hoping I get another 6 year break but will have to wait and see. I do think that exercise and diet do help. The diet part of eliminating foods that cause inflammation (and sugar!). I struggle with that but keep trying to focus on it.

Do you do any additional things to help relieve the symptoms of PMR?

Hello @barbararene, welcome to Mayo Connect. I also have PMR. The first time I was diagnosed with PMR was put on 20 mg of prednisone. It took me well over a year to titrate off of prednisone going back and forth between 1 mg to 1/2 mg before I was finally able to get off of it. My PMR has been in remission until this past August and I was put back on 20 mg of prednisone. My doctor put me on a 21 week titration schedule to get off of it and I'm now on week 23 and going back and forth between 10 and 7.5 mg of prednisone. I have been as low as 5 mg but the pain was bothersome. I have a doctors appointment next week and am planning to discuss a different titration schedule. I think the first time it was trying to reduce the dosage every 3 days instead of every week. I can deal with a little pain but didn't want it to get out of hand. I don't use any alcohol as it has negative effects on my small fiber peripheral neuropathy.

Are you able to split the 5 mg pills to go from 10 to 7.5 mg? I think that's how I was finally able to get off the first go round with my PMR.

Hoping your PMR goes into remission so that you can stop taking the prednisone.

John

Hi, Today our disease got some publicity in the 08/20/19 New York Times, science section, by Jane Brody, writer.
It’s good publicity but contains nothing you have not covered.
The 43 comments were interesting and one md mentioned several times we all should have been tested for a tick disease before going on prednisone? I never heard of this. If you give me an e-mail address, I will forward to you.
I was happy for spreading the word and maybe attracting some research $$ for PMR.

Hello @beckie, Welcome to Connect. Thank you for the private message. I thought I would answer your private message in this discussion so that other members can see your question and offer suggestions and share their experiences with you. Just click the View & Reply button on the email notification for this message and it will take you to the discussion.
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Beckie's message - I began my journey with orthopedic who did many tests, and diagnosed pinched nerve in lumbar area but could not determine why I was having such pain in shoulders and arms and neck. After lab work he referred me to rheumatologist who diagnosed PMR. After a week on prednisone I am sooo much better, I still have pinched nerve in back to deal with, but that pain is not nearly as bad as the PMR. Has anyone else experienced back surgery while dealing with sudden onset of PMR? This is all new to me. I'm just so thankful to the surgeon for going the extra mile to get me to rheumatologist. I had never heard of this disease before few weeks ago… Thanks for any advice you may have.
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First let me say I am really happy to hear your PMR is better since being on prednisone. Can I ask if your rheumatologist discussed tapering off of prednisone after you start feeling better? I've had 2 instances of PMR which is currently in remission. The first time it took about 3 years to taper off of prednisone. The second time it took about a year and a half. I do believe diet - eating healthier has helped me control the PMR some. There is also another discussion you may want to join that may be helpful for your pinched nerve in your back.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@artscaping @jenniferhunter and others may have some other suggestions on the back pain and pinched nerve.

Thanks for contacting me!

Thanks so much for your quick reply. My rheumatologist did discuss tapering off prednisone to a maintenance level eventually, but I am still so new to the treatment we have not talked numbers..He started me with 20 mg per day. Finding this Connect has been so encouraging, and I appreciate your help. I think I have consulted "Dr. Google" too much as it gives such a dire outlook for long term prednisone. However at this point for me it is a miracle drug. I've never experienced anything like this. My story sounds so similar to other posts- age 69, active exerciser, then sudden crushing pain and weakness. I will have to wait and see what eventually is done about pinched nerve...At this point I just feel so blessed to out of that excruciating pain for the most part, though mornings are still bad. Thanks again.