so I had a flare a few weeks ago. CRP was slightly elevated- higher than my normal but still in ‘normal range’.
I upped my methylprednisolone from 3mg to 10mg for past 5 days. Today will be day 6. Pains are gone and yesterdays lab work normal again. CRP <.3mg.
Can I try to drop the dosage now or should I wait another few days?
My Rheumatologist is also ordering a more comprehensive autoimmune lab work up today to check if something else is brewing.
I’d give it a few more days - say up to 10 total.. and bloods aren’t always the absolute guarantee that some doctors seem to think… 🤔
Why should there be something else brewing? The primary reason for what happened is going to even slightly too low a dose.
Because 3 doctors all have been saying for 2.5 years they are not convinced I have PMR and this time the flare felt very different. Never had pain go into my wrists hands fingers before. No hip pain. Just upper body. And now new daily migraines for past 7 days
I like to be thorough. I guess I worry a lot.
When 1st being diagnosed I had pains in my hands to the point I'd wake up and they would be in fists. I also had pain in my big toe that wouldn't allow me to walk.Everyone has something different.
Is that the only place you had pain and they still diagnosed it as PMR?
No, it started there. By the time I was diagnosed at night time I felt like I was being gutted alive and in so much pain I couldn't scream. My husband had to help me up. Hips, shoulders, hands. By afternoon the pains were like your worst labor pains but that was a walk in the park compared to the evening.
Okay that sounds more like typical PMR. Sorry you went through that. It’s awful
LORA/EORA (late or elderly onset RA) can present identically to PMR so that is worth considering.
My primary just commented on my low lab numbers saying something else must be causing inflammation with these low numbers. And suggests going off steroids for a few weeks to better check.
Yikes! I don’t think I can do that.
I’ll let my Rheumatologist know what Primary said and I guess also get the Rheumatologist’s other tests in meantime. Hopefully steroids don’t throw off the tests.
How long have you been on pred?
Since December 2021. 2.5 years
Does he want to finish you off? What a numpty!!
😆
Forgot to say, doesn't really - my low inflammatory markers weren't hiding anything else - without or with pred. Some people just don't mount this inflammatory response - up to 20% according to some studies,
Sorry. I’m not following
What do you mean by ‘don’t mount this inflammatory response’. ?
Are you saying 20% can’t beat this disease?
Must be my U.S. English 😅
Will jump in for PMRpro as she is travelling.
The 20% (or up to 20%) is the number of patients reported in various studies who don’t have raised inflammation markers…
.. another reason why we say symptoms are the key…
I didn’t have any raised markers my pain was all upper body shoulders wrists fingers and to a small degree gluts but that could also be due to back problems
"mount the inflammatory response" is the medical term for not actually developing the response to inflammation that raises the ESR and CRP
Notheing to do with whether you will recover - but there is no "beating" PMR or other autoimmune disease. it may or may not burn out on its own but you can't influence it nor can medication yet other than managing the symptoms there is no cure.
I must admit, if I am offered extra checks I tend to say yes even though there is no reason to suspect anything.
oh I requested those extra labs. ☺️
If you go cold turkey on the prednisone you can go into adrenal failure. Especially as you have been on them for 2.5 years. Be careful.
Flare up?
Is management of a 'flare' different to from 'going too low'?
Question About "Normal" vs Very Low ESR/CRP
Can paracetamol help when pred doesn't?
Intractable flare
