1. < Polymyalgia Rheumatica (PMR)

PMR with normal blood markers

Posted by johnlo @johnlo, Jan 26, 2023

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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jlo2252 | @jlo2252 | Aug 12 8:42am
In reply to @jlo2252 "@karo89135 Hi Karo, still hoping someone will respond who knows anything about your skin cancer treatment...." + (show)
@jlo2252

@karo89135
Hi Karo, still hoping someone will respond who knows anything about your skin cancer treatment.
My thoughts and prayers are with you🥰💕

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To Karo89135
So my husband did have the mohs when they treated his skin cancer. His spots were on his face and neck areas. He was also treated with 5-fu cream.
I know you are concerned about your hair- I know there are so many things that can affect our hair growth! Personally, I’ve had three things affect the thinning of my hair—my thyroid function, my decline in female hormones and of course, prednisone! Lucky me. Unless you want to use rogaine for the rest of your life (!), there’s not much you can do! ☹️
Hairdresser recommended hair products Nioxin for thicker, fuller hair and it works good. I use the shampoo, the conditioner and scalp treatment. I get the #4 line for progressed thinning and colored hair.
You can find them in beauty salons and in beauty supply like ULTA.
Hope this helps!

REPLY
gailg | @gailg | Aug 12 11:05am
In reply to @karo89135 "Hi G, I was diagnosed with PMR in 2016 after knee replacement and possible GCA. Was..." + (show)
@karo89135

Hi G,

I was diagnosed with PMR in 2016 after knee replacement and possible GCA. Was on 60 mg prednisone for weeks, then tapered to 4mg over many months. Had a few intermittent flares too. Had Covid in 2022, vaccine and 2 sessions of Reclast because of possible osteoporosis. Feb. 2023 had increasing finger, hand and wrist pains. Went back up on prednisone, rheumatologist quit for cash only, new rheumatologist suggests Kevzara. After the second Reclast my head itched so bad, hair came in curly and like straw and the hand/fingers pain started. Endocrinologist is checking me for hyperparathyroidism but not confident in him. The goal is to find relief from pain and
morning stiffness from Kevzara and taper down/off prednisone. Markers are negative except sed rate is elevated during a flare. As you can see, I’m extremely hesitant to start another new drug. Methotrexate for 5 months did help the hand pain but headaches were intolerable. Had Covid again 3 months ago followed with one of the worse flares ever.
This is my history…Hope it gives insight to someone. It will help me to communicate with others regarding this disease.

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I too, had finger/hand pain terribly. Of course they said it was carpal tunnel!! That has now gone. I am terribly frustrated as I'm sure you are too. Best of luck!

REPLY
karo89135 | @karo89135 | Aug 12 7:47pm

Hi G, yes, it's called palendromic pmr. Hands, fingers and feet too. No one tells us these things. Had my first Kevzara today. Spiked a 100 degree fever for about 2 hours but ok now. Am hopeful this works without any problems. I am desperate. Good luck to you!

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1 reply
karo89135 | @karo89135 | Aug 13 11:29am

Yes, hopeful too!
Karo

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gailg | @gailg | Aug 14 12:23pm
In reply to @karo89135 "Hi G, yes, it's called palendromic pmr. Hands, fingers and feet too. No one tells us..." + (show)
@karo89135

Hi G, yes, it's called palendromic pmr. Hands, fingers and feet too. No one tells us these things. Had my first Kevzara today. Spiked a 100 degree fever for about 2 hours but ok now. Am hopeful this works without any problems. I am desperate. Good luck to you!

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Very interesting. Thanks! Good luck to you....and all of us!

REPLY
1 reply
karo89135 | @karo89135 | Aug 14 12:30pm
In reply to @gailg "Very interesting. Thanks! Good luck to you....and all of us!" + (show)
@gailg

Very interesting. Thanks! Good luck to you....and all of us!

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Yes, Amen!

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