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Just starting prednisone for recent PMR dx. Terrified of side effects
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.
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@hosers2 Thank you so much for sharing your experience with Simvastatin and also Hydroxychloroquine (HCL). It is extremely valuable. Thinking back, I should giveHydroxychloroquine (HCL) a try when prednisone caused me sleepless and more. Fortunately, I had to cut the dose aggressively to get some sleep which avoided some side effects effect. Of cause the trade of were some pain and stiffness. I have been off prednisone for nine months now. My health condition is improving… May you gain complete recovery asap as well.
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1 ReactionI’ve had PMR twice and been on steroids. It took a long time to get off them but I couldn’t have done without them.
Make sure you are on a bone sparing drug ( doctor should give you this) and take Vit d3 and k2 to help with absorption of calcium.
@nm11643 I have actually been pain free and off of HCL for two years now. Rheumatologist actually announced that I am in remission. (Hopefully to never experience PMR again). It took two and a half years.
I have been a member of HealthUnlocked (England and Italy) since 12/2020 which is the equivalent of this Mayo Clinic blog. Over that time span, I was the ONLY person who managed to actually recover from PMR completely. Sadly, it has been totally impossible to convince anyone on that site that PMR can be treated with HCL instead of Prednisone. They just laughed at me when I announced I had to make that change due to the AMD. But one other factor is probably a reason none of the thousands on that site are getting past the 7.5mg prednisone threshold is because they have all been coerced by their health system that, and I quote: “Everyone over the age of 50 should be taking STATINS”.
I have been on Prednesone for 7 years for PMR. The dose is low now 2mg daily but can’t seem to stay off of Prednesone without PMR symptoms. I don’t mind taking it as it has been a miracle drug for me. No PMR pain for the entire 7 years. It is recommended to take it in the morning but I take it at night and no trouble sleeping. People without PMR act alarmed about Prednesone, but quality of life is more important than being on a drug that others worry about. Best wishes in your PMR journey. I hope you have symptom relief and virtually no side effects.
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2 Reactions@melanie82 I just turned 83 after the PMR diagnosis so for sure I'm interested in quality of life over worrying about being on prednisone. For me to go 7 years like you I'd have to live to 90, while possible not at all likely.
Have you had to use PPI's or had any digestive issues at all? My Rheumatologist gave me a prescription for PPI, but I've heard too may things bad about them. Same with Statins, which I also would never take.
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1 Reaction"I have been a member of HealthUnlocked (England and Italy) since 12/2020 which is the equivalent of this Mayo Clinic blog. Over that time span, I was the ONLY person who managed to actually recover from PMR completely. Sadly, it has been totally impossible to convince anyone on that site that PMR can be treated with HCL instead of Prednisone."
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@hosers2
I'm happy hydroxychloroquine worked for you. Maybe you should just stick with MayoConnect. It is more geared to how USA patients are treated for PMR/GCA but anyone from anywhere is welcome to share their personal experiences.
The "experts" on the HealthUnlocked PMR forum aren't very open-minded. I started Actemra to treat PMR about seven years ago. I was on Prednisone for 12 years so I wanted an alternative to Prednisone. I was willing to try Actemra but I didn't know anything about Actemra. I just wanted some information but I was told that Prednisone was the "only option" for PMR. I was discouraged from even trying Actemra because of all the potentially "serious" side effects relative to the "manageable" prednisone side effects. Very few people had any personal experience with Actemra to treat PMR which were the people I wanted to hear from instead of the "experts."
I went ahead and tried Actemra. Within a year I was off Prednisone. I was excited to share my personal experience. The "experts" on the Healthlocked PMR forum said my experience with Actemra wasn't pertinent information to people in the UK. Eventually I was banned from the forum for not disclosing I was from the USA. My being from the USA was obvious to everyone on the forum.
I liked the HealthUnlocked PMR forum in general ... it was just the self proclaimed PMR experts that weren't open-minded. I think the experts had good intentions. They certainly advised people to take more prednisone when they thought someone needed it. Twelve years of prednisone was enough for me.
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2 ReactionsHi. I was finally diagnosed with PMR in December last year after four months of misery and appointments and tests. My PCP and my rheumatologist both said prednisone at 20 mg was the way to go but I refused. I'd had a nasty experience with a short course of prednisone 20 years before. I did agree to take 1 mg to start, then 2 mg, then 3, etc. Increasing a week at a time up to 20. By 5 mg I was pain-free but both docs recommended that I keep going. The side effects seriously set in at 6 mg: big, rapid weight gain 30 pounds in six weeks), skin problems, vertigo, general yuckiness. I hung in until 8 mg and said no more. Then weaned down .5 a week. The last segment was .5 alone for three weeks. Most of the weight has gone, most of the side effects are gone. I've now been off all prednisone for three weeks. My shoulders are sore in the mornings but it's not much more than uncomfortable. I tell you this story because my rheumatologist had never considered titrating up to relief and stopping there. Best of luck.
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1 Reaction@dadcue The “self proclaimed PMR experts” got me reprimanded because somehow “I was scaring them”. Those experts had PRM for years and years and, according to them, there was no other cure for PMR than Prednisone. When I suggested their pains might be from them constantly taking high doses of Atvoristatin (for high cholesterol), I was, once again, reprimanded as though I was giving out medical advice. So I “banned” myself. You can lead a dog to water, but you cannot make him drink.
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3 ReactionsI'm over it now but I still get riled up sometimes ... sorry. Your post triggered something. I am truly happy that something besides Prednisone works for you.
I haven't needed any prednisone for about 5 years. I have been on Actemra for 7 years without any serious side effects. I relapse when Actemra is stopped but my relapse was a gradual return of my symptoms combined with elevated ESR and CRP.
I loved the following survey from the UK.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/.
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I said some of the same things about Actemra years ago and I got banned. The "expert" seemed to think Prednisone for the rest of my life was a better option for me than Actemra.
The expert knew more about how to treat PMR because of the many years she has taken prednisone. When I got banned, she was being started on Actemra for PMR after she told me doctors in the USA were "breaking the rules" for treating PMR with Actemra.
Actemra isn't FDA approved for PMR but my theumatologist thought it might work for me. Now Kevzara is FDA approved for PMR but it wasn't available when I started Actemra. I went with my rheumatologist's expertise at the time. He said it was only an "educated guess" that Actemra might work for me.
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1 Reaction@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.