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

I would try to get into the Rheumatologist as soon as possible. Get on a cancelation list, anything. Limiting sugar is always a good idea but if it is PMR ( and it sounds like it) it won't help. Although he is pain, it will give the Rheumatologist more to go on if he is untreated when he sees him or her. The symptoms and blood work will be more indicative of what is going on. Best of luck.

Tried Ibuprofen and Tylenol (Extra Strength) taken together (at the same time). This did help me pre-diagnosis and pre-prednisone. Neither one on their own helped at all. Your GP can prescribe Prenisone for you short term.

I would like to put in a plug for Low Dose Naltrexone here. It does help with chronic pain. I pushed my rheumy for it (before I was diagnosed with PMR, unfortunately that doc did not see what was happening with me) and it was a God-send. I also have Crohn's and it healed my small intestine and now my Crohn's is inactive. Pretty neat. I went off of it for 3 weeks when I had a hip replaced and I was lying there wondering why I hurt all over and I realized that I was missing my LDN. What a difference when I got back on it. And the change (like pred) only takes 2-3 days. I take 2 mg. I couldn't tell that 4 mg was better so why bother. Here is a PubMed article on it but do your own research. Vivid dreams are the only side effect that I can see.
Low-Dose Naltrexone for Chronic Pain: Update and Systemic Review

Many of the doctors order those tests (at least) every month. So maybe the gp would be willing to get current ones done and then give your husband the pred. It's a crummy situation, no doubt about it. It's my understanding that if you take one Tylenol and one Advil together, they might be more effective. It's worth a try. Please let us know how things are going.

Well -- thought I would give a 'update' on my experience with PMR - short recap -- diagnosed with PMR 9/2021. Put on 40 mg of prednisone by PCP then referred to RMD. Confirmed and had a temple biopsy / negative. Then RMD put me on Methotrexate / 8 tablets / 1 day a week. Feeling great BUT, I couldn't concentrate or get interested in some projects. SO -- on 5/1/22, I decided I'm done with prednisone -- I was down to 5 mg daily. I had blood work done yesterday and sed rate down to 11 (was as high as 95) - and another inflammation test was less than <.10 ----- Still taking the Methotrexate tabs ----- will contact RMD tomorrow and schedule appointment.

The course of your condition certainly shows how different we all are. Best of luck.

I started feeling pain in my hips last December; I had joined a gym and noticed the pain shortly after using the treadmill. By Christmas I could barely walk. Couldn't get in to see GP until January 11. He did the blood work, saw the elevations indicating elevated inflammation. Got the diagnosis of PMR. He prescribed 40mg of prednisone which I started and IMMEDIATELY felt better. He suggested I meet with a rheumatologist. This was JANUARY and the earliest I could get into the rheum was JUNE (this Tuesday, actually). In the meantime, I cut my pred down to 10 mg, which I took in the evening to help with the well-known morning nightmare. My gp suggested las week that I take a break from the pred for a few days before meeting with the rheum. So I am off it and, man, what a difference - I don't want to sit down b/c there is such pain trying to stand. Don't even talk to me about stairs. My sister (nurse) suggested some CBD gummies - they seem to help some (company - Proleve). I am glad to have found a forum for people like me who are struggling with this.

God bless you and hold you up in this time of trial.
Theodore

I certainly hope that the rheumatologist can help you find a good schedule for your pred. My advice? (Long time with PMR). Figure out what your particular symptoms are and listen to your body and speak for it. The labs don't tell the whole story or it would be easier for the doctor. Even if your numbers go down on your inflamatory markers, if you still in pain, speak up. Best of luck and you are not alone.

Hi @ksidorov, it's no fun that's for sure. With PMR I felt like I was wearing an astronaut suit of pain, from the neck down over the Tin Man's body (stiffness). Were you doing okay on 10 mg? Did you decrease gradually from 40 to 10 mg? Did you also taper down from 10 mg? From what I've read 40 mg of prednisone is a high dosage. Usually, PMR is managed with 20 - 15 mg of Prednisone and a gradual taper. I took 40 mg of Prednisone because I had Giant Cell Arteritis. That was a year ago - I'm down to 3mg now with virtually no pain and normal CRP results. My current taper is -.5 mg every two weeks. With proper treatment, there is an end to the unremitting pain and stiffness of PMR. Good luck. I hope you like the Rheumatologist.