I have been reducing my prednisone by 1/2 mg every month. I am down to 1mg for the past week. I have been having problems sleeping at night. About half way through the night, both shoulders scream out in pain waking me up. I eventually fallback asleep and once I get up they feel much better. I also noticed my carpal tunnel is bothering me again in my right hand. Both hands have finger numbness. I hate to think I may have to go up with my prednisone. I am still having my once a month Actmera infusions.
Has anyone else experienced this. Thank you and have a great day🌼
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That doesn't really sound very PMR-ish, Where in the shoulders is it? have you been doing anything different recently - lifting, gardening or sitting at the computer for a long time? Or changed your bed/pillows? Or need new ones?
the pain is in both shoulders at the top, the joints. I haven’t been doing anything than my normal stuff. It only happens during the night. The numbness in my hands happening in the morning. My hands always have been a little stiff in the morning. I had a diagnosis of carpal tunnel in my one hand and was scheduled for surgery. I did some exercises and wear a brace at night. It has been fine until just recently. Now it’s both hands. Since I have this and both shoulder pain, I was thinking PMR and reduction of prednisone maybe affecting my symptoms.
I changed my pillow and turned my mattress about 6 months ago when I was having trouble sleeping.
Was thinking the same, I had something similar after one of my Covid jabs. It was dx as impingement by a physio on the phone who said he could tell by which fingers were numb and tingley. He said there was nothing I could do, only take co-codemol for the pain and it would go in about 8 weeks, which it did, almost to the day. I've since met everal other people who had the same problem after Covid jabs. I also had tingley hand problems when I came off steroids in 2017, but carpel tunnel was ruled out by tests. It all resolved when I went back on steroids in 2018.
so I've gathered subsequently. i had my arm folded and others I know had been advised to let their arms dangle. And I'm also told that in some places the wrong size needle was used. 8 week of excruciating pain .. and I still got Covid! Don't reget it though, I was grateful for the jab at the time
I am thinking the same thing with steroids, I had carpal tunnel for years. It was getting worse. Once I was on a dose of 15 mg of prednisone, it went away. I have not had the most recent booster.
Another thing I've learned over the years is that Primary care actually know very little about things like PMR and autoimmune illnesses. When I tried to get help for tapering, adrenal issues, diabetes, joint pain, allergies, bladder and bowel problems, balance problems all the standard things they tried were totally useless and when I went back because the things they prescribed hadn't worked they were stumped. If they hadn't heard of it then I wasn't ill. To be fair, I got referrals eventually but still had to do my own research and push for different opinions as my symptoms didn't match what htey were used to dealing with.
I reduced to 1 mg and started having problems so I’ve gone back to two mg, I wish to get off of them asap I’m staying on 2 mg for one month, then drop 1/2 mg each 28 days until I am rid of them. Let the body re adjust to pre steroids.
That will only work if the underlying autoimmune cause of the symptoms we call PMR is in remission - and even 1mg can be plenty to manage the inflammation - zero is not,
Yes, but it’s not connected to my PMR. The shoulder pains I have when too low on pred are in a different part of the shoulder! One is muscular & the other is joint pain! Do you wear splints at night for carpal tunnel? When mine gets bad I wear the splints, onky at night, for a week, then it eases again, & is no problem. The splints were issued to me at our local hospital.
I've had "dead arm", neck muscle spasms, myofascial knots - the lot over the years. I have found that a good sports massage therapist helps a lot, providing they don't go in too hard! Apparently my Trapezius and Rhomboids are really tight and this affects the Scalenes in my neck. Currently my Quadriceps femoris and Tensor fascia latae ( the big muscles at the front and side of the thigh) are not playing ball and complain if I do too much. After a treatment all feels wonderful but unfortunately old postural habits creep back in and it's back onto the merry-go -round again. What I have found during the past two years of reducing, is that nearly six years of PMR and Pred have taken their toll on my muscles, my age also affects their ability to heal and repair and the loss of muscle mass contributes to all of the above. My new normal is not my old normal unfortunately; and I also find it hard to consistently remain below 2mg.
I heard that mussels can be affected. I have very light weights and have been using them on days I feel really good. I have tried to stay active as much as I can. It was no problem to do most everything I did before PMR, however now that I have reduced so low on prednisone, I think my body is not liking it. As long as my blood tests are good as far as inflammation, I am going to try and go with it.
I’m reducing Pred too and now down to 2.25mg and got lots of unusual aches like you describe. At the moment it’s my neck and alternating shoulders and upper arms. The pain wakes me up at night sometimes. When I was at 2.5 mg (for a month) it was in my index finger first knuckle on both hands that hurt intermittently. I toughed it out because I could and my body sort of settled down to the lower dose. Only when I feel great again do I try to reduce further. I am fully expecting there will be a dose at which I can’t reduce any further. While I want to get off Pred I also don’t want to suffer. This is a long way of saying if you can put up with it for a little longer it might flatten out if you are like me. I reduce by 1/4 mg each month and believe me I can feel that tiny reduction in my body 😳 the first time I do it. I will add that I don’t work so I’m under no pressure to be anywhere at any time. Good luck to you, hang on if you can or even try a 1/4 extra for a few days to see if that is enough to make it stop 😊
sounds very close to what I experienced at 1mg! I’ve had carpel tunnel for a few years. Once on prednisone it went away but at 2mg my left wrist started hurting and at 1mg it really hurt, tingly fingers etc. and the familiar shoulder and hip pain I experienced at the onset of PMR returned. I went back up to 3mg but considering going to 5. I’m reluctant to try another Rx due to side effects. I’m going to see a functional medicine doc and I’ll see what he says first.
I’ve been on a very restricted diet since Sept - no dairy, sugar, grains. Last month I cut out meat entirely but added back in whole grains. I take supplements to ensure I get enough nutrients. I can’t alter my diet much more! I’ll follow up.
I am feeling extremely lucky. I began at 13 mg 10 months ago, have dropped the dosage 1mg a month, am now at 3 mg and have had no return of my shoulder or hip pain.
Having read on HU the advice about reducing the dosage 1/2 a mg at a time as the dosage gets down to where I now am, I plan to go to 2.5 mg next month instead of dropping to 2 mg.
This site and the Mayo Clinic site in the US have proven to be a bonanza of sound, clear advice on this subject. So glad I found these sites and have recommended this UK-based site to all the seniors in the aging-in-place community where I volunteer in the US.
I've had horrible shoulder pain extending to trapezius and upper arms. I've tried twice to reduce. The pain creeps up around 2.5mg, I try to tough it out, but it always wins. I'm back on 3 now. Some days it's fine, some days sore. One day it was awful with stiff hips too - I thought I was back to square 1! But as I've recently started on statins (much against my will and what I have read) I don't suppose that is helping!
I find that if I do too much lifting or yoga etc my body takes ages to recuperate.
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