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

Welcome @tmbear, Sorry to hear that you have joined the PMR club. You are not alone. My PMR is currently in remission but I was really worried when I was first diagnosed and started on prednisone. Connect and it's great group of PMR members helped me navigate the condition twice. I think you might find the video in this discussion a good place to start for learning more about how to navigate the PMR symptoms.
-- Video: Steroids and PMR - International Panel of Doctors: https://connect.mayoclinic.org/discussion/video-steroids-and-pmr-international-panel-of-doctors/.

There are quite a few discussions on the side effects of prednisone if you want to scan through what others have shared - https://connect.mayoclinic.org/search/.

What terrifies you the most about the side effects of prednisone?

Hi, @tmbear. I'm in similar situation. Pain since March, sometimes debilitating. Had a high dose prednisone 3 months ago which was amazing, but PCP suspected Repatha reaction since my blood tests were normal. It took 2 months to clear the Repatha with no improvement. On low dose prednisone 15mg for 3 weeks now and the relief is startling. I haven't noticed much side effects yet except hand tremors. I am concerned about long term side effects, but I view it as a tradeoff to restore my quality of life. I no longer dread stairs!

I have been on and off, mainly on, prednisone for 35 years for PMR. For me it is a wonder drug. I would say that the only side effect is thin skin so I bleed easily with the slightest abrasion. Currently I am on Kevzara and 2.5 mg prednisone. Tried to reduce prednisone to 2 mg had some pain then to 1 mg and had a lot of pain so back to 2.5 mg.

Being terrified may be a normal reaction for you, but I'm sure you realize it is not the best place to stay. It should be more of a phase than a hide out. The best way I have found to fight that terrifying feeling is to arm myself with information - I had a doctor tell me 20+ years ago that Knowledge is Power and that is so very true for me. You may not like what you learn, but I find that hearing/reading the truth helps eliminate fear - I have armed myself with facts. Armed with facts I can make much better-informed decisions.

I would start with going to my PCP and be candid with where you are emotionally and where you want to be. Seeing a Rheumy is often much harder. There is a national shortage of them plus every long Covid problem leads to an autoimmune problem - which gets you to a Rheumy. I have found that being super organized for my Rheumy helps us focus on my priorities as well as hers. Remember, it is a partnership.

My Rheumy has a nurse practitioner whom I see every 6 months and I see my Rheumy every 6 months. The NP is great and can spend more time with me and help me over speed bumps in my understanding.

I also use creditable websites, mainly in the United States, however there is a lot of information about PMR worldwide. Learn what can be done to monitoring for damage from the prednisone side effects, tell every doctor you see that you are on it and want to know what they think you should lookout for within their specialty. Do not isolate your concerns, share them and gain knowledge would be my best advise.

I will admit I have a few friends who would simply put their head in the sand and not want to hear a syllable on the topic. I suspect by your posting this is not you.

I was diagnosed in 2023, took 10mg prednisone for a few months (3 weeks before complete relief), then tapered for over a year. I feel much better than before prednisone, but much older. I think it is understandable to be wary of prednisone and get off it when you can, slowly. There are many possible side effects and they can’t tell you which ones you will have. My mother had PMR at 66 (they called it bursitis back then), took prednisone, and as far as I know had no side effects or relapses and lived another 35 active years.

I did not gain weight, but I did suffer sleeplessness, thinned skin, and degraded bone mass. I will trade that for PMR any day of the week. Medicine is rife with trade offs. I was nonfunctional with PMR. Now I am functional. I wish you the best!

Thank you all for your comments and suggestions. I did watch the video and it’s very informative. I really like my rh doc - he’s a great listener and spends quite a bit of time with me. Since I’ve experienced profound relief during two short (1 week and 2 weeks) rounds I’m excited to feel functional again. My biggest fears are the long term adrenal effects and osteoporosis. Had my first bone density exam in aug and have osteopenia so fear loss of
Bone mass. I already have thin skin so fear that getting worse. My job is very sedentary and emotionally exhausting. It is fulfilling though. I had begun working out prior to all these medical issues and had to stop due to breast surgery. Plan to continue as soon as possible. I’ve already gained a ton of weight in the belly area which is likely aging, stress and sedentary lifestyle. I plan to delve into learning foods that are good for inflammation. Also I’m a great “questioner” (occupational hazard) and have learned to gauge my relationships with docs on how well they react to that. So glad I found this welcoming and informative place.

@tmbear Cut out refined sugar if you want an anti inflammatory diet. I did it 3 years ago and it helps. I did not lose weight yet I felt better. Now I can look at sweets, colas, etc and they don't interest me at all. Actually I don't even want a bite.

@tmbear
All great advice. This group is full of experience .
If you have not yet…..start a chart/ daily record of your drugs, pain level, exercise accomplishments. I found it to be a real motivation. Walking in the rain is not my thing, but I could not let a day go by “without” recording exercise of some sort. It’s been a roller coaster, and this has kept me motivated.
As for Osteoporosis…..get your older Dexa reports so you have a comparison to the new. In my case, my drop was minimal, and at 79yo not worth getting upset, per my pcp.

Ask your Rehumy abt the biologicals. I’m on Kevzara which helped me get off of the prednisone.
Good luck

After waking to PMR and a C-reactive protein spike, I was treated with Prednisone for 7 months and had reduced to 7.5 mg. However I developed Macular Degeneration and was told to get off of Pred as soon as possible, at my Opthamologist’s suggestion, my Rheumatologist switched me over to Hydroxychloroquine (HCL) over a months time. It worked and I eventually returned to normal function after a year and a half. So. . .prednisone is not the only treatment for PMR even though some will tell you otherwise.

Another thing I might suggest: Four years prior to getting PMR, I experienced the same exact pains, only one at a time. Diagnosed with rotator cuff damage in my right shoulder. Then left shoulder. Then hips. . . .one at a time. Couldn’t get up off of the ground. Then carpal tunnel damage. Loss of feeling in three fingers in each hand. Doctors recommended surgery for every one of these ailments. Fortunately, I never went through with any of those surgery’s. As it turned out, they were caused by my taking Simvastatin (for high cholesterol). After reading about others experiences with statins, I quit cold turkey. And 30 days later, every single symptom had disappeared. So. . . . .if I were to suggest anything, it would be to recognize the dangers of statins. I truly believe my taking statins for five years in ever increasing doses was the reason I ended up with PMR.

@hosers2 Wanted to chime in on hydroxychloroquine. I was offered it early on and after doing my research I was more concerned with its side effects than I was the side effects of Prednisone so I stayed with Prednisone. Options are not always real choices was my take away.