How did your PMR begin?

I had a bronchial/sinus infection a week before I developed PMR symptoms. I have read some articles including from the Mayo Clinic that environmental factors such as a virus might play a role but nothing specific has been proven.

I also read that there could possibly be a correlation to the Covid vaccine. The cases of that I have read that discuss getting PMR after getting the Covid vaccine state that it usually happened within 10 days after receiving it. My last Covid booster vaccine was last year so I'm not sure if the cause is the Covid Vaccine or the bronchial infection.

Ironically, for years before PMR I've had a low White Blood Cell Count and a weak immune system and now it's on overdrive. One thing which I'm sure most of you know is that diet is vey important and to avoid foods that cause or aggravate inflammation.

I am in Ontario, Canada. My PMR seems tomevolved into RA, because my hands are changing, but nothing hurts. My PMR started at the beginning of Covid with a swollen leg. I had many tests for 10 months before my rheumatologist diagnosed me.
I don't blame anything except that my mother had a mild case at the same age. She recovered well and lived to her 90s.
Now my doctor started me on a drug that is supposed to slow arthritis progression. I could not tolerate it so I don't know what comes next...

Hi, I noted that you have a low white blood cell count. My white cell count has been low for over 20 years. I went through a number of evaluations (including bone marrow biopsy), but now just have it tested every 6 months. It doesn’t seem to have any effect. During the time I have had the low WBC, I have had PMR 3 times, all the vaccines, colds, strep throat, etc. and nothing seems to have much of an effect on the white cells. I have read a bit about an autoimmune condition that leads to low WBC.

I’m 71. In December 2020 I went to an orthopedic doctor because both my knees were bad. I needed replacement surgery. It was the height of Covid, no vaccine yet, hospitals jammed. He suggested Euflexxa gel shots to get me through until hospitals & rehabs were safe. 3 weeks later I could barely move. Most of January & February 2021 I was bedridden. The doctor said I must have lupus. My inflammation was crazy high. I went to a rheumatologist, she couldn’t figure it out but did suspect PMR. They only gave me low doses of prednisone which didn’t help. I changed rheumatologists & dabbled in methotrexate, a little prednisone, Dr could not give me a definitive diagnosis & still my SED rate & CRP were really high. In October 2021 I made an appointment with Mayo in Minnesota. I was finally seen by a wonderful doctor who correctly diagnosed PMR & Vasculitis/GCA. I started with 40 mg prednisone & a few weeks later Actemra infusion.
Almost immediately my inflammation dropped to normal. It’s been at normal levels since June 2022. I’m still on Actemra & doing well. We don’t know how long I have to stay on Actemra, but it sure is expensive. I have Medicare & a good secondary but our out of pocket each month is around $500-600! It’s been quite a journey but I truly believe those gel shots to the knees did this to me. I also think not treating the PMR correctly led me to the GCA complication. And I still need knee replacements.

Interestingly, after I developed PMR my WBC is back to normal. My WBC had always tested below normal before PMR but whatever is causing my PMR had brought my WBC back up. I recommend taking zinc and also extra Vitamin D. What is the name of that autoimmune condition that leads to low WBC?

It is called autoimmune neutropenia. There is no treatment that I know of unless the white cells are very low. It is different than the low white counts often seen during chemo.

My PMR started in the summer of 2019. My doc didn't diagnose it, only treating me with painkillers and Ibuprofen. After a few weeks I thought enough is enough. I then went privately and was diagnosed with PMR. I was started on the usual dose of 15mg of Prednisone and within an hour my pain was gone. Sadly, I was told to taper far too quickly and in the March of 2020, GCA appeared. So up I went to 40mg and have been tapering ever since. My rheumy wants me off Pred asap. No point in that whatsoever as a flare will ensue and I'm petrified of GCA turning up again as it did a few months ago. I'm currently only tapering by 0.5mg every month. I'm one of the lucky ones and not in pain, but being aware of the GCA symptoms is more important to me. I'd never heard of either of these diseases but pretty sure that STRESS plays a huge part in us getting it.

Somewhat similar for me...neither my primary care physician nor an orthopedic surgeon correctly identified it as PMR. Took them four months to figure it out. Within a day of starting Prednisone, my shoulder pain was gone.

Like you, I began on 15mg of Prednisone and, by happenstance, dropping the dosage 1 mg a month, I started on 3mg a day today.

IMHO, is not .5mg a month extremely slow withdrawal? It's going to take forever for you to wean yourself away and during all that time there are the side effects about which you have to be concerned. Are you taking Fosamax also, to guard against the bone loss which is, so I am told, the most common side effect of taking Prednisone?

I really need to go slow as I've experienced so many ups and downs....petrified of GCA again. I already have osteoporosis and take 35mg of Risedronate weekly. Refused Alendronic Acid at 70 mg. Also refused Methotrexate to help wean me off Pred. However, on the 7 June when I see my GP I'm going to ask him about the drug LDN (Naltrexone) Hopefully, he will prescribe it. My blood glucose (HbA1C) is slightly elevated as is my cholesterol, but not enough to warrant drug intervention at the moment.

Yes I did. I posted my story under Multiple triggers aka when the chickens come home to roost.