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...:(........

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

gailg | @gailg | Aug 10 12:59pm

In reply to @janiceem "Wow! That wait is awful! Is it an insurance issue or where you are located?" + (show)

Where I am located. Although I am ready to make the long drive to Denver if I could find anybody.

Teri | @tsc | Aug 10 1:23pm

In reply to @gailg "Nobody has ever mentioned that. But my symptoms are always bilateral as they move around." + (show)

My symptoms were complete pain and stiffness from the neck down, pain on a scale of 12/10 with PMR.
Were you ever prescribed prednisone on a trial basis?

gailg | @gailg | Aug 10 2:58pm

My symptoms moved from place to place, always bilateral, and always nearly unbearable pain. It was thought to be orthopedic and neck and back injections helped about 40% and then it moved on. Nobody even suggested prednisone, and knowing what I know now I would have demanded it. It's in my knees right now and bearable but
what if it all comes back?? Really trying to find a Rheum that will see me.

janiceem | @janiceem | Aug 11 9:10am

In reply to @gailg "Nobody has ever mentioned that. But my symptoms are always bilateral as they move around." + (show)

Same for me. Always bilateral pain, but my leg/thigh pain went away first and my upper arm pain was the last to leave.

karo89135 | @karo89135 | Aug 11 12:18pm

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.

jlo2252 | @jlo2252 | Aug 11 12:48pm

In reply to @karo89135 "Hi G, I was diagnosed with PMR in 2016 after knee replacement and possible GCA. Was..." + (show)

Welcome to our group, karo89135,
You certainly have a complicated history and hope you will find some answers here! While you are waiting for others to respond, I have a few questions. I was a little confused over your Reclast treatment. They gave you “two sessions of Reclast for “possible” osteoporosis”?? Did you have a bone density test? Did they check your calcium and vitamin D levels before they gave you reclast? We’re the two sessions spaced a year apart?
Hopefully someone here will have some answers for you. You have had a difficult journey here but remember, you are not alone!

karo89135 | @karo89135 | Aug 11 4:26pm

In reply to @jlo2252 "Welcome to our group, karo89135, You certainly have a complicated history and hope you will find..." + (show)

Yes, possible osteoporosis. One year apart. Old rheumatologist said osteoporosis but needed prevention because of daily prednisone. Dexa scan has never showed osteoporosis and after first Reclast, hip improved. I hurt so bad after the second Reclast. I believe it was infused too fast.
Calcium, vitamin d all checked. Endocrinologist has no idea about hyperparathyroidism abnormal numbers. He said it was a Reclast spike. Calcium is 10 and PTH still over 100. I do have kidney stones.
Any suggestions about starting Kevzara before Mohs procedure? This will be #4 skin cancer in 2 years. Thank you everyone for your support!

jlo2252 | @jlo2252 | Aug 11 6:28pm

In reply to @karo89135 "Yes, possible osteoporosis. One year apart. Old rheumatologist said osteoporosis but needed prevention because of daily..." + (show)

@karo89135
Thank you for response. I did not know that Reclast was also used to prevent osteoporosis— I applaud your doctor for taking care of your bone health while on prednisone!! My own experience with Reclast was good—no bad side effects. Even though you said you had bad effects after your second Reclast I would still encourage you to continue with your infusions. Maybe they can slow down infusion for you( although mine normally runs for only 15 minutes!) I had 2 fairly recent fractures before I started the Reclast—one I had to have surgery (kneecap fracture) and it was a very painful experience! So please don’t give up! I just had my second Reclast about 2 months ago.
You poor thing—skin cancer x 4!!! What type of skin cancer? My husband had 2 bouts of the Basal cell type, with successful treatment.
Wishing you all the best in your quest for good health!

karo89135 | @karo89135 | Aug 11 7:50pm

Hi jlo. Thank you for your concern. I'm concerned about the drastic change in my hair.
Both basal and squamous cell all requiring Mohs. I really believe there's another entity going on in my body. I was a competitive athlete, worked in a busy hospital and loved life. I am thankful for you and this outlet.