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Confused about PMR symptoms
I was diagnosed with PMR in August by a rheumatologist. I was placed on 60mg
Prednisone. Began tapering and now I am down to 15mg when the symptoms are returning. He wanted me to drop down to 12.5 which I tried for 3 weeks but it was not without constant pain and stiffness. Then was told to go to 10. I did that for a couple days and wham! I was terrible. I couldn’t get out of bed, hard time doing anything. Then the second day new symptoms appeared. Pain in my 2 replaced knees, and extreme pain and swelling in both hands and wrists. I even had slight jaw pain. I also had the terrible shoulder, neck and hip pain. Went to the PA in my rheumatologist today and she told me that hand and wrist pain is not a symptom is PMR and it must be something else. I did have blood work yesterday when I called for the appointment and she said my levels were not bad. So she said to stay at 15 for 1 week and start the decreasing again. I am fearful to decrease again because I don’t want to go thru that again. It was awful!! It was like the 4 months prior to being diagnosed. Just wondering if any of you have experienced awful wrist and hand pain during a flare up? I am 62 year old female and my 60 year old brother also has PMR and has been on steroids for 2 years and is on 5 per day
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I had been on 5mg daily of prednisone for over 15 years for general arthritis. Last August I was diagnosed with possible RA and was prescribed sufasalazine 500 mg tablets on a gradual increase to 2 tablets 2X daily while decreasing my prednisone in 1 mg units as the sufasalazine starts working. After 2 months I was able to
Get down to 3 mg of prednisone but I had an attack that was so bad that my shoulders,hips, legs and right wrist ached so badly that I couldn't move without hurting. I will also note that I play Pickleball about 3X weekly. I am 74 years old. I had to go to 25 mg of prednisone for several days and then tapered to 15mg for 1 week and then down to 10 for one week and then back to 5 mg. In late December I experienced another attack like my last one and my rheumatologist now thinks my symptoms are more characteristic of PMR. So I went back to 20 mg of prednisone with no sulfasalazine but for a week I was still hurting too much to play Pickleball so I added the sulfaslazine and after a few days I was back to normal. My doctor also gave me 1 mg prednisone tablets so I can reduce my prednisone gradually at my own pace as I see fit. It's been two months and I am down to 12 mg of prednisone.
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3 ReactionsWelcome @gsm1, Those 1 mg prednisone tablets do help for tapering in smaller amounts. It sounds like you have a great doctor that listens and works with you. My rheumatologist also gave me scripts of 2.5 mg tablets along with the 1 mg tablets that helped when I got below 10 mg.
Have you made any lifestyle changes to see if they may help with the RA ad PMR? Do you keep a daily log with pain and dosage for tapering?
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2 ReactionsThat’s interesting that you started to feel better after adding the sulfasalazine back along with the prednisone. Does your rheumatologist think you might have both RA and PMR? I hope the taper continues on smoothly from here.
@johnbishop thanks for the resources.
I am eating more fish as well and pork. My doc wants me to stay away from eating anything with legs and eyes, which rules out all meat except fish.... Baby steps for now.
At least now, I don't feel alone about the hand and wrist pain. My doc made me feel that the pain wasn't associated with PMR
Thanks again
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1 ReactionI also am a believer in the anti-inflammatory Mediterranean eating plan. I avoid gluten as well.
This should serve to avoid some metabolic and weight
gain problems. My supplements are vitamin D3/K2,
calcium antacids, and turmeric. Melatonin for
sleep and plain stevia sweetener. Atorvastatin was
added for cardiovascular risk associated with systemic
inflammation. I eat beef twice a month or less.
Seafood and poultry are protein staple. I cut alcohol
to 3 drinks a week.
Motivated by having good PMR remission off steroids
only to discover my psoriatic arthritis causing the hand
and shoulder pain that developed months later.
Lack of lab abnormals can be seen with arthritis.
Prioritize sleep and walk and stretch every day.
Yes, I have had that hand and wrist pain coincident with PMR, in dominant hand only.
I am 73 y.o. male with onset in Nov of 2022. I had tapered to 2 mg Pr by Dec 2023 but symptoms were creeping back in, in particular the hand and wrist pain. Finger pain was on top side of fingers, not on palm side. Rheumatologist thought that it might not be PMR, so I consulted with a surgeon, who diagnosed "severe" carpal tunnel syndrome (I work with my hands a lot). Had CTS surgery and hands are both fine now aside from residual numbness in the median nerve fingers and I feel like I got my mojo back!
Have been on Kezvara for 4 months now, via the Theracom Patient Assistance Program. Down to 1 mg Pr as of yesterday with no ill effects, touch wood. In 2 weeks I plan to stop Pr.
Best of luck--to all of us.
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5 ReactionsThis doctor has a lot of good information.
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4 ReactionsYes ... she is very accurate and straight forward in the way she explains PMR. My rheumatologist explained it the same to me but I still needed constant explanations when I still had PMR after 12 years. I'm glad she mentioned Actemra (tociliumab) but that is only FDA approved for GCA. It wasn't easy for my rheumatologist to get it approved for me.
Progress has been made for PMR. Now Kevzara (sarilumab) is FDA approved for difficult cases of PMR.
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1 ReactionTwelve years! I hope it has abated and that you are pain free.
Technically, I still have PMR and it has now been 16 years. PMR abated four years ago when Actemra (tocilizumab) was tried. I'm currently being treated with a monthly infusion of Actemra.
I got off Prednisone entirely two years ago and I'm relatively pain free. Getting off Prednisone was difficult but so much easier after Actemra was started. It took me nearly 2 years to get off Prednisone because of adrenal insufficiency from long term Prednisone use. Actemra isn't suppressing my adrenal function like prednisone did.
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