Just starting prednisone for recent PMR dx. Terrified of side effects

Posted by tmbear @tmbear, Nov 26 11:56pm

Hello all. Recent dx of PMR with lack of markers although sed rate does go above “normal” at times. CRP never elevated. PCP gave me a short but intense round of prednisone a few months ago as an “test” and I had almost immediate relief. Saw an rh doc last year after referral from hand ortho doc. What a waste of my time-completely dismissed severe pain in shoulders and upper arms as “just arthritis.” Waited 8 months to see a different rh doc and after listening closely and moving my limbs around he dx PMR. My PCP has been convinced this is what was going on for several years but was confused by lack of markers. Also just had left breast excisional biopsy (benign sclerosing adenosis) but do have LCIS dx this past August. After horrendous experience with various docs re abnormal mammogram and core needle biopsy I took myself to the breast clinic at Mayo - great care. Just the crappiest last four months! Have had osteoarthritis for years which has progressively worsened and is in so many of my joints. Took Meloxicam, Celebrex, and Nambutone with NO relief. While I’m grateful for current rh doc and finally getting a diagnosis I am terrified of side effects of prednisone. Just started a four month course, fairly low dose. Tx drugs for LCIS also have similar side effects. Just wanted to introduce myself and get in touch with others going thru similar experiences.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for Mike @dadcue

@hosers2

I just read something interesting from the American College of Rheumatolology (ACR) that you might like.

"In patients for whom long-term steroid use is felt to be problematic because of side effects, your rheumatologist might try other medications, including methotrexate or hydroxychloroquine."
https://rheumatology.org/patients/polymyalgia-rheumatica
I think most doctors in the UK would agree that long term steroid use is "problematic."
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My rheumatologist never tried hydroxychloroquine but other medications were tried to see if anything would help me taper off Prednisone. My rheumatologist was open-minded enough to try almost anything if I was willing. When Actemra was tried there was no guarantee it would work. I was told that I wouldn't know if it worked or not unless I tried it to see.

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@dadcue That is very interesting. The article says it was updated in 2025. I wonder if that paragraph was added at that time.
I do know that I successfully transitioned over to HCL (over a 30 day period) completely eliminating the prednisone. I then tapered off of HCL over about 18 months. Haven’t had any signs of a re-occurrence of PMR for about two years now. Wondering if HCL would work for you. Considering that Actemra keeps you well, but only if you continue to take it. Wondering what the long term effects are from taking Actemran the remainder of your life.

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Profile picture for hosers2 @hosers2

@dadcue That is very interesting. The article says it was updated in 2025. I wonder if that paragraph was added at that time.
I do know that I successfully transitioned over to HCL (over a 30 day period) completely eliminating the prednisone. I then tapered off of HCL over about 18 months. Haven’t had any signs of a re-occurrence of PMR for about two years now. Wondering if HCL would work for you. Considering that Actemra keeps you well, but only if you continue to take it. Wondering what the long term effects are from taking Actemran the remainder of your life.

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@hosers2

I have a rheumatology visit today so I will ask how I am supposed to stop Actemra. Fortunately, during the 7 years I have been on Actemra, it doesn't seem to cause me any serious side effects like Prednisone did. My rheumatologist doesn't want me to take Prednisone on a long term basis again.

My rheumatologist says Actemra should "prevent flares" from recurring better than Prednisone did so that is why I still need Actemra. I'm wondering if I never have a flare ... how do I know if I still need Actemra. I didn't have very good luck when Actemra was "interrupted" during Covid because of the a supply chain issue but that was years ago.

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Profile picture for Mike @dadcue

@hosers2

I have a rheumatology visit today so I will ask how I am supposed to stop Actemra. Fortunately, during the 7 years I have been on Actemra, it doesn't seem to cause me any serious side effects like Prednisone did. My rheumatologist doesn't want me to take Prednisone on a long term basis again.

My rheumatologist says Actemra should "prevent flares" from recurring better than Prednisone did so that is why I still need Actemra. I'm wondering if I never have a flare ... how do I know if I still need Actemra. I didn't have very good luck when Actemra was "interrupted" during Covid because of the a supply chain issue but that was years ago.

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@dadcue It would certainly be interesting to know if Hydroxychloroquine works for you like it did for me. I started out at 200mg and slowly reduced it over 18 months. I haven’t had a re-occurrence in two years now.
Again, I should emphasize: I firmly believe those aches and pains I had while taking Simvastatin were not only identical to the major trauma of PMR. Those who continue to take any statins will, in my opinion, lessen their chances of ever recovering from Polymyalgia Rhematica.

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I too was concerned about side effects of prednisone but I can honestly say that after 12 months (started at 20 mg and at 5 now) I had no real measurable side effect. I did make sure I always had something to eat (cottage cheese or some toast) in morning before taking prednisone. And my GP and rheumatologist both are associated with largest health provider in area and in a message them with any questions. I will say I was careful with any other meds (otc) I might have needed for every day issues. My suggestion would be to be aware of other meds you may take and their reaction with the prednisone. Stay educated and get as much info as you feel you need or want. Knowledge during this condition is critical. This site is excellent.

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Hi all. Checking back in. Have had horrendous side effects from just 20 days of prednisone. Started at 15mg for two weeks then first reduction to 12.5mg. A few days later I was having serious emotional and cognitive side effects. As a psychologist I probably would have dx someone with similar symptoms as having Bipolar and/or early dementia. Scared the living hell out of me and my husband. Called rh and spoke with his wonderful nurse who reassured me I wasn’t losing my mind. Rh dropped me to 10mg for a week than will take 5mg for a week then stop. Have an office appt with rh 12/26. I have always had moderate to severe sensitivities to many common meds. Took statins for 2 weeks several years ago and had horrible myalgias. PCP stopped statin immediately. At 10mg my pain has returned. Headache starts about 2 hours after taking. Had to go back on a PPI instead of famotidine due to awful acid reflux. Crying for all reasons and no reason, angry and very irritable out of nowhere, hypomania. Scariest were the cognitive symptoms - memory, word finding difficulty, general brain fog. Was seriously worried about my ability to carry out my professional duties but apparently my 35 yrs of experience carried me through although I’m keeping a sharp eye on that and have consulted with colleagues. Did some research and found several recent studies on psychiatric and cognitive symptoms (one by Mayo) that affirmed a subset of patients on prednisone experience these side effects. Right now I’d rather have pain from PMR than go through this again. Right now I’m leaning heavily toward no drugs at all.

Anyone else with emotional and/or cognitive side effects? They really caught me off guard.

REPLY
Profile picture for tmbear @tmbear

Hi all. Checking back in. Have had horrendous side effects from just 20 days of prednisone. Started at 15mg for two weeks then first reduction to 12.5mg. A few days later I was having serious emotional and cognitive side effects. As a psychologist I probably would have dx someone with similar symptoms as having Bipolar and/or early dementia. Scared the living hell out of me and my husband. Called rh and spoke with his wonderful nurse who reassured me I wasn’t losing my mind. Rh dropped me to 10mg for a week than will take 5mg for a week then stop. Have an office appt with rh 12/26. I have always had moderate to severe sensitivities to many common meds. Took statins for 2 weeks several years ago and had horrible myalgias. PCP stopped statin immediately. At 10mg my pain has returned. Headache starts about 2 hours after taking. Had to go back on a PPI instead of famotidine due to awful acid reflux. Crying for all reasons and no reason, angry and very irritable out of nowhere, hypomania. Scariest were the cognitive symptoms - memory, word finding difficulty, general brain fog. Was seriously worried about my ability to carry out my professional duties but apparently my 35 yrs of experience carried me through although I’m keeping a sharp eye on that and have consulted with colleagues. Did some research and found several recent studies on psychiatric and cognitive symptoms (one by Mayo) that affirmed a subset of patients on prednisone experience these side effects. Right now I’d rather have pain from PMR than go through this again. Right now I’m leaning heavily toward no drugs at all.

Anyone else with emotional and/or cognitive side effects? They really caught me off guard.

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@tmbear
All my issues have been physical. I am also sensitive to medications.
I have been dealing with gastrointestinal issues, hives, high blood pressure, low blood sugar.
I hope you can find an alternative medication to help with the PMR. I am looking forward to getting off prednisone soon! Have had 3 kevzara injections so hopefully it will work to tame the PMR after prednisone.

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I didn't like the side effects so I'm on Methatrexate..3 ...25 once a week.. no pain.

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