How to address PMR pain while decreasing prednisone

I was having similar issue with 1
20 mg Prednisone and that’s why I took it at dinner time but my doctor said that’s wrong. But switching to the AM my symptoms got worse at night again. so he switched me to Methylpredisolone instead of Prednisone and it works like a charm. I am like a 0 to 1 pain level on 16mg. he said I am a very rare type that does not do as well on Prednisone so this may not be an approach for everyone. It will be a bit challenging tapering though because Methylpredisolone does not come in the small 1mg doses.

Thanks for the info. I start tapering from 20mg to 15 today. I little nervous about it because I was going to try 17.5. Neurologist said to try 15 for a week to see if symptoms re-occurred. If not good; if so, up it to 17.5. Fingers crossed. At the moment I am 100% pain free on the 20. Here we go...

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I'm having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck - your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

John, if you feel comfortable sharing, were your Sed Rate and CRP test readings high when you tapered off, or was it solely the pain? I just tapered last week and had pain for a few days, but my Sed Rate and CRP readings were in the normal range. I took pain meds for a few days and the pain did resolve.

I am wondering if it is smart to try tapering as long as your ESR and CRP are still high. After prednisone for a little over a year my ESR has gone down only to 45 and my CRP was 24.99 in January 2022. I tapered down to 10 1/2 mg and had a terrible flare and am now back up to 14 mg prednisone. Will I always flare if my numbers are not in a normal range? Seems inevitable to me and hardly worth going through the up and down with prednisone until those test numbers normalize. Am I correct?

John, if you feel comfortable sharing, were your Sed Rate and CRP test readings high when you tapered off, or was it solely the pain? I just tapered last week and had pain for a few days, but my Sed Rate and CRP readings were in the normal range. I took pain meds for a few days and the pain did resolve.

I am wondering if it is smart to try tapering as long as your ESR and CRP are still high. After prednisone for a little over a year my ESR has gone down only to 45 and my CRP was 24.99 in January 2022. I tapered down to 10 1/2 mg and had a terrible flare and am now back up to 14 mg prednisone. Will I always flare if my numbers are not in a normal range? Seems inevitable to me and hardly worth going through the up and down with prednisone until those test numbers normalize. Am I correct?

@queenie2030, I agree with @sashakay that it is a difficult decision. I can only defer back to what my rheumatologist told me the first time around with PMR when I thought I would never get off of predinisone. He told me to listen to my body and keep a daily pain log then don't taper down unless your pain level is at some level you are OK with. For me, that was a 1 or 2 on a scale of 10 being the highest. I also think@sashakay makes a great point about watching what you eat and reducing or eliminating the ones that are inflammatory. Here's some information that might help:

Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683

@queenie2030, I agree with @sashakay that it is a difficult decision. I can only defer back to what my rheumatologist told me the first time around with PMR when I thought I would never get off of predinisone. He told me to listen to my body and keep a daily pain log then don't taper down unless your pain level is at some level you are OK with. For me, that was a 1 or 2 on a scale of 10 being the highest. I also think@sashakay makes a great point about watching what you eat and reducing or eliminating the ones that are inflammatory. Here's some information that might help:

Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683

It’s certainly a difficult decision. When I experienced something similar I decided to look at my diet and see what foods would potentially be inflammatory in my body - I omitted all deadly nightshade foods, ie potatoes, tomatoes, etc and also cut down dramatically on high sugar foods. I Eat a lot of plant based foods (not everyone’s choice lol) and I started to feel tons better. It may not work for everyone but for me it was worth a try. CRP down to nearly normal range, minimal pain or discomfort. Good luck 🤞