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PMR with normal blood markers
Hello peoples...
I have PMR and have been fine after getting off Pred until the Covid came on stage...then the flare up hit me, along with the stress of the country blowing up at the 2020 election, I just went to hell..:(. I didn't do anything for quite awhile 'cept bi### and moan/cry along with the stress and confusion about the vaccine, which I was against because of unknown and known meds and I don't get along and who knows what the long term effects are? I finally succumbed to the Moderna vaccine after research findings said that the PMR flare up CAN be caused by a virus being fought off by the PMR...Hmmm. So I got it, and guess what? My PMR symptoms were reduced very much ! More even after the second vaccine shot....then tapered off a little after the 3rd. Now, it's been a year since the 3rd and still have the PMR symptoms and they are gradually increasing in strength.
Now the kicker here......
All my blood markers showing PMR are /have been in the normal range and have seen A LOT of doctors ( VA included)but they are all scared to give me Prednisone...(License issue)...because the markers are normal.....:( Now what? I can't take any NSAIDS anymore because now I have sensitivties/side effects from them and my body doesn't like opiods either.....
I think I may be a good canidate for a PMR test subject...LOL.
Does ANYONE out there have any good suggestions what my next step should be? I'm getting close to the end of my rope here...and it's a solid hit when i let go...:(........
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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.
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1 ReactionMy 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.