Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I'm afraid that sounds like an awfully low bar "still function." I prefer as low as possible with a good quality of life (not pain free though some seem to be). 4 mgs. is pretty low for two years in. I'm still at 9 mgs. after two years and drop slowly, now 1/2 mg. at a time. We can look forward to a miraculous recovery (average according to studies is 5.9 years). In the meantime, the struggle is finding the balance of the drug no one wants to use, and being able to function well. You shouldn't feel lousy most of the time. Best to you.

I’ll be doing calcium too, and asking my doctor to refer me to a rheumatologist. Not sure if other changes are associated
With PMR, prednisone, or just aging (thinning skin, memory, etc)

I have PMR and was diagnosed after getting shingles. Within 9 months it had gone away while I was on methylprednisolone. I went off medication and it stayed away. Sept 2020 I got the shingles vaccine "Shingrix" which is the same family of MRna shots as the COVID shot. Within 24 hours the pain came back full force. My doctor told me it was the vaccine and not to take the COVID one as I would probably end up in the hospital. I have not and will not partake in the "vaccine". I am now 10 month of pain, and can no longer take either prednisone or methyprednisolone as the side effects are worse than the pain. I am no working with nutrition and de-stressing my life. I know that alcohol, sugar, and processed foods tend to make the pain worse. So I am going to try anti-inflammatory foods, limit my carbohydrates to whole foods, and be very careful of what protein I eat. I also take Vit D, B12, magnesium, calcium, calm & Clear (chinese herbal formula), melatonin, fish oil, and a few other supplements. I am hoping this will take and lessen the pain to where I am able to sleep through the night and function better during the day.

Newly diagnosed with PMR - two months ago. Was so bad I could not get out of bed or dress myself. All my joint are painful and swollen. Dr started me no prednisone - 20mg. Kept falling back into the pain. Dr. changed me to methylprednisolone - 16mg - still kept getting painful. Added methotrexate by injection 2 weeks ago and increased the methylprednisolone to 1 1/2 daily. For 2 weeks I felt great. Dr tried to drop my methylprednisolone back to once daily. Started going downhill almost immediately and d today was awful again. Took 2 methylprednisolone today and am starting to feel a little better. Will go back to 1 1/2 tomorrow while waiting to hear from Dr.

I hope someone can explain to me the difference between methyl prednisone and regular prednisone. Thanks

"The main difference between oral methylprednisolone and oral prednisone is that methylprednisolone is slightly stronger than prednisone, so a lower dosage is used (4mg of methylprednisolone is equivalent to approximately 5mg of prednisone)." Read more here:

- Methylprednisolone vs Prednisone - What's the difference between them? https://www.drugs.com/medical-answers/difference-between-methylprednisolone-prednisone-3509126/

unfortunately in the age group susceptible to PMR there is overlap with other ailments such as osteoarthritis..it is therefore at times during the tapering of prednisone that one is not sure which 'disease' is playing the major role..the sed rate and crp are the best indicators of pmr activity so it is probably prudent to do these tests before altering prednisone dosing

I was just diagnosed two weeks ago and now on 20mg Prednisone daily. I had been suffering for over a year though so I was about at the end of my rope. A little background... I've been in pain management for 11 years due to severe spine issues (DDD & Stenosis) so when I woke up one morning and my left shoulder hurt, I just thought I had slept on it wrong. The problem was it never went away. The shoulder pain would get so bad it would interfere with me dressing myself and showering. Fast forward to 2021 and around February or so I started to get joint pain in my wrists and hands, right shoulder, hips, and knees. My pain management provider referred me to a Rheumatologist which I finally saw in June. He ordered blood work and my ESR was over 100 (I'm not sure what that means, just know it's high). He diagnosed me with PMR and ordered additional blood work which I will be having done next week. All this is pretty overwhelming for me because I'm only 56 and my PM doctor first suspected RA but the Rheumatologist doesn't think that is what this is. The follow blood test will have the CRP added to it. I will say, this is the most painful thing I've ever had to deal with and I probably would have tried to see someone sooner but I think the fact that I was already on pain medication and I have a fairly high tolerance to pain, made it seem not that serious. It wasn't until I couldn't walk that I started getting a little frightened. Thanks for reading.

Hello @wings651 and welcome to Mayo Clinic Connect. I am sure that the inability to walk was frightening for sure. How are you doing with your diagnosis and Rx two weeks in?

Your story had a familiar ring to it. I couldn't turn over in bed. We need our hips and shoulders to do that. It would take me 20 minutes in the morning to get out of bed. I was also having swelling in my temples. When I was finally diagnoses by an ER doc I had to be wheeled into the ER in a chair. I kept trying but no one could seem to figure it out. Then they wouldn't see me. I guess I was seen as a nuisance.I was sleeping eventually sitting up on the couch with pillows on both sides propping me up. What is wrong with this picture? I was terrified and felt helpless. That was almost 5 years ago. Now I'm getting better. At times I was on 60 mg of pred. Then I'd get down, and back up. I was all over the place. I'm now tapering down and I'm at 7 1/2. I can't seem to do it in whole steps so now I'm trying half steps. But I have mental clarity, and I was heavily medicated with gabapentin, and melatonin, and ante-depressants. Anything to shut me up. haha! I feel like I'm back in the game. don't give up. keep looking for answers. Ask questions. Demand answers. Get better. Hang in there. I'm with you. Talk it out and say what is on your mind. Hopefully someone will help you to get through this. Thanks for sharing your experience.