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

So sorry you are having to deal with the ups and downs of treating this disease. I have been fortunate enough to be able to taper down from 15 mg to 5 mg since I was diagnosed last November. I too wake up with sore shoulders, biceps, wrists and hands but after taking prednisone and waiting an hour or so, it calms down and I can move into my day. Probably two days out of ten I feel worn out, and then my friends don't expect me to go out and play! Then I just rest and don't feel guilty about it. Be kind to yourself!

Be kind to yourself is good advice. Don't push, is it really that important? (Sometimes, it is, I know, but most of it is just habit.) If you can and you need to, nap. Myself, I don't adjust my meds. I have glaucoma and the less I take the better. As for triggers, I've got a few but I try to handle them the way I did without PMR. You make adjustments but you don't let it be in charge of your life. All that being said, learn all you can about the disease, yourself (you are the expert there) and then, you decide. Best of luck.

Regarding PMR symptoms -- does PMR always cause joint pain and stiffness or can it just cause muscle aches? I've been having severe muscle pain all over, but mainly in my upper back and neck, sometimes up the back and side of my head. Sometimes the pain eases by early evening. I don't have joint pain or limited range of motion. My SED and CRP tests are always within the normal range. Three years ago I had a temporal artery ultrasound and biopsy, both negative for GCA. I also had a negative TA ultrasound a few months ago.

2 weeks minimal aches and pains no medications at all, suddenly symptoms increased horrible jaw pain headaches constant. hip and shoulder pain creeping in. Interestingly I have had a stressful couple of weeks, is all this related to stress levels? Not bad stress but new grandbaby and supporting daughter with night shift so little sleep, worrying about my daughter even though we all survived the first few weeks is stressful watching your child go through those early days, also purchased a lake front cabin which was quite stressful getting through all the financing etc
Very disappointed but what can you do? Went and had blood test yesterday and sure enough CRP is elevated, not very high at present but above normal. Will ring rheumatologist and pray prednisone is not the only option!

Hi @deniseinca, the head and jaw pains could be symptoms of Giant Cell Arteritis, a companion disorder of PMR. It can cause blindness or stroke if not treated. Is your scalp tender? Any trouble seeing? GCA is treated with a higher dosage of prednisone than PMR and most often diagnosed by a biopsy of a temporal artery. I wish you well!

Hi
Thank you for replying and yes i have both PMR and GCA i have had them together since the beginning although was slower to diagnose GCA, i have had a temporal biopsy. Very difficult as i was finally 3 weeks prednisone free after 3 yrs. I am awaiting my physicians instructions

I don't have joint pain. I have muscle pain or had. I take 6 mg of pred daily. I was diagnosed Oct 21. It was not stiffness, it was extreme pain when lifting my arms, squatting, trying to roll over in bed etc. Upper arms, shoulders, neck, upper back, under buttocks, tendons in upper thigh and inside of upper knee. Bilateral. I woke up with it and progressed in the coming weeks.

I have been off Prednisone for 18 months but still have some PMR symptoms like mild leg weakness, morning stiffness and occasionally the dreaded butt pain. I also have a second trigger thumb which came on a few weeks ago. I have had no treatment for this one so far as it’s hard to see a GP where I live - 5 week wait at the moment. The first trigger was pre-PMR diagnosis. I used a splint part of the time and kept rotating and gently trying to bend the thumb and it eventually recovered.
The splint is now on other thumb but it’s more serious as it is my dominant hand and painful. I have an appointment in a couple of weeks so will discuss options with the GP.
Thanks for bringing this up I only recently realised it may be related to that slippery critter PMR!

That must be disappointing. It's about one year for me and I'm just down to 2 mg prednisone from 40 because of GCA. I'm kind of anxious about what the future holds. I don't think anyone really shakes these disorders in a year. When you talk to your rheumatologist would you mind posting what dosage gives you relief? Take care.

Hello all,

I just stumbled upon this group while searching for natural remedies for PMR. I was diagnosed one year ago. I started with 20 mg Prednisone and was on that dose for 6 or 7 months when my doctor started lowering my dose. I am down to 5mg as of this week and I am in a lot of pain. In May my doctor gave me a prescription for Hydroxychloroquine to take along with the Prednisone. While in Hawaii on vacation I developed a terrible rash (due to sun exposure) which is a side effect of Hydroxychloroquine. The rash lasted 3 weeks and was very uncomfortable. I stopped taking the drug, figuring it was causing me more harm than good. When my dose of Prednisone was lowered to 5mg, the pain was so bad I started taking Hydroxychloroquine again.

My doctor’s plan is to slowly get me off Prednisone and just take Hydroxychloroquine.

Is anyone else taking Hydroxychloroquine? If so, are you have side effects?