PMR with normal blood markers

Actemra is FDA approved for the treatment of GCA. I hope Actemra works for you.

I wasn't diagnosed with GCA but I had PMR for 12 years. I sometimes needed up to 100 mg of prednisone to control multiple autoimmune problems including uveitis. Uveitis can also cause vision loss.

My rheumatologist needed to seek approval to prescribe Actemra to me. The recomendation from a panel of doctors was to treat me the same as if I had GCA.

My blood markers have always been normal for the last 30 years of treatment for PMR. I started off with classical symptoms of PMR, that is pain radiating through my shoulder girdle and hip girdle for no reason at all. I have been on and off prednisone (P) 20 times for PMR. Each time it acts like a miracle drug. That is immediate relief withing 6 hours. I am currently on hydrochloroquine and P. In reading some of the comments below, I have had changes to my lymphocytes and neutraphils.

Tammy…I’m about to be put on Actemra too and am concerned about it …but I understand it can have wonderful success …particularly for GCA…hope it goes well for you …good luck with yr scans 🤞

Are your concerns about side effects from Actemra or that it might not work?

I had concerns about both. I decided I had nothing to lose. Prednisone was causing me serious problems after 12 years of PMR treatment. If Actemra didn't work, plan B which was to continue taking prednisone so nothing would change.

If I had side effects, then Actemra could easily be stopped. This is a huge advantage compared with prednisone which can't be stopped easily or quickly.

I don't know if everyone has side effects from prednisone. After I was able to tapered off prednisone, I was also able to stop 3 blood pressure medications, atorvastatin for high cholesterol, and metformin for my blood sugar and insulin resistance. It took another year or so for my cortisol levels to normalize. I no longer have overwhelming fatigue from adrenal insufficiency.

There are some contraindications to Actemra that you should be aware of. If you have any history of diverticulitis, then Actemra may put up at risk of a bowel perforation. Many people who take prednisone may have preexisting diverticulitis.

I went to every doctor possible from rheumatologist to infectious disease and sadly they all just do blood work and look at results and not one could give me an idea. Than I developed a hammer toe and after steroid injections etc which of course did not help the hammertoes, my daughter recommended I ask for a steroid pack and the foot doctor gave me a prescription and a refill, and amazing the very first day of taking the first couple pills 90% of the pain in my joints had stopped with prednisone. Course I took the second refill and sadly did not continue any other things. 2 1/2 years later, while in a pottery class, I was telling an older woman about my experience and she told me she knew what I had told me it was polymyalgia rheumatica. It took just a normal average human to tell me what was wrong with me, so I put myself on a very low-dose of prednisone, which I buy in my travels, sadly that has been helpful. I was just disgusted why our doctors here did not have the curiosity to ask me further questions or listen. Please find a doctor that listens.

All of these eggs and pains in my joints has started about a few days to a week after I had gotten a big scratch on my leg from my dogs nails in the swimming pool, which I had not gotten out and cleaned up, before I knew my knees, my hip joints, my shoulders Are in such a pain, I did not want to get out of bed in the mornings, during daytime. They were decreased in the morning. It was just awful. If I had not gone to foot doctor for hammertoes during that time, I was planning to fly to Mexico for a day and find a doctor that maybe helpful and listen to the things that I was experiencing. Because here they just depended on blood test and if that showed nothing, they didn’t have the curiosity to research about my symptoms.

I feel that a certain type of bacteria due to a scratch that I had received from my dogs nails started all of the PMR symptoms within 4 to 7 days for me and at first I really didn’t know what was going on until I was so stiff eventually, and my joints were so inflamed, but all testing would show everything as OK, it was very sad lack of interest, and care received from doctors.

Welcome @shayp, I'm sorry to hear you haven't been able to get your doctors to listen. It's good to see that you are advocating for yourself to learn what helps. @dadcue shared a really good video in another discussion that you might want to watch here:
-- History of PMR -- Interesting video presentation from past to present.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
There are a lot of excellent rheumatologists that listen and I guess I was lucky when my PMR showed up that I got one of the really very good ones at Mayo Clinic Rochester, Dr. Thomas Osborn - https://www.mayoclinic.org/biographies/osborn-thomas-g-m-d/bio-20054469.

I also had no blood markers for PMR--everything was normal, but then again, I had a very mild case. (My symptons started soon after my second Pfyzer vaccination.) I only hurt when laying in bed! As soon as I got up, I was fine! It took 4 months to diagnose and was put on 10 mg. Prednisone. My pain stopped immediately and I tapered off of the Prednisone in about a year. I had one flare up when I contracted COVID in Dec. 2022, but it hasn't flared up since, even though I had COVID again last week for about 5 days. This time it was like having a head cold with no fever and I haven't had a booster since my 2nd vaccination in March of 2021! I do attribute my mild cases to my whole foods, primarily plant-based diet, high in anti-inflammatory foods. I highly recommend it (and I happen to be a registered dietitian.) I also do some sort of exercise class 6 days a week.

I also have normal inflammation markers- CRP and SED rate. I have since February when this started.
If this is the case, you have what’s referred to as
“A-TYPICAL PMR” . (15-20% of cases). You need to be on Prednisone. Not NSAIDS, not opioids- just prednisone and maybe Tylenol as needed. Find a doc who understands this. Call MAYO for a referral. Hope this helps.

You were so blessed to get treatment right away, I got two rounds of the prednisone for two weeks after four months and then three years later I put myself on 10 mg prednisone. There are many doctors, but few who truly are gifted, Their profession is their passion and are listen.