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...:(........
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
John just wanted to let you and others that I asked my GP to set me up with a rheumatologist. I am now waiting for the referral. My last blood test on the 6Th. my numbers up. Question How do I find My thread and reply directly to it? I hate computers.
Thanks
Everett Catlin
To find all of your previous discussions and comments just click on your member name @everettcatlin or go to the top of any Connect page and click your profile icon and select Profile & Settings. You will see links at the left for Comments, Discussions and more.
Thanks for being a volunteer mentor! You’ve been dealing w this for quite a while. Thanks for the insights. I have a healthy diet/lifestyle already. I don’t keep a daily log. I really don’t have any pain or symptoms on my current regimen except a knee that gets more fluid in it if I do anything rigorous. It seems what ppl are doing for treatment is all over the map. At least I feel like I’m on the right path based on what I’ve read here. Thx
Thank you for sharing this - very helpful to me.
Thank you so much @connelly that is encouraging to hear - so similar to my pmr journey. Hope the LDN works!
I don't think I am quite getting it, My blood work is not normal.
1. On 24 Nov 2022 my C-Reactive Protein, Quant was 0.6 (H) (-
I'm just a patient like you with no medical training. Your doctor or rheumatologist can explain the test results better as relates to your specific condition. From what you mentioned, 0.6 is not high according to what I've read.
"Although “normal” CRP levels vary from lab to lab, it is generally accepted that a value of 0.8-1.0 mg/dL (or 8-10 mg/L) or lower is normal."
--- C Reactive Protein (CRP Blood Test): https://www.testing.com/tests/c-reactive-protein-crp/
That is interesting and thanks for sharing your journey @robin1040. I couldn’t tolerate the methotrexate so trying to taper prednisone without it. I hope it works for you.
I'm a little confused by @johnlo's post. It sounds like his symptoms got better with each vaccination, which I am surprised to hear. My symptoms appeared soon after my second Pfyzer vaccination--my upper arms and thighs hurt like h*ll, but only when lying down in bed. My inflammatory blood markers have always been normal, but I happen to eat a whole food diet very high in anti-inflammatory foods, which may be helping me. I managed to taper off my low dose of prednisone within a year, but it flared up after I contracted COVID. I am once again tapering off a very low dose of prednisone.
Yes, mine have been normal for two weeks after starting prednisone. I can feel the information coursing through my body. I started tapering in March. I got from 20mg to 12.5mg when my pain increased to 15! I’m back on 20 mg. I feel like crap! I was at 15 mg for a month and felt better than I do on 20mg so I’m tapering back to 15 starting today. 💕