PMR relapse symptoms

@aisp3b

"I must fix my knee to proceed with my decrease in PMR meds."
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My knee replacement surgeries were good for a 10 mg reduction in my prednisone dose. Surgery for trigeminal neuralgia was good for another 10 mg reduction.

Being on prednisone to treat PMR isn't an excuse for not being treated for other conditions. However, prednisone was the excuse for postponing my lumbar fusion surgery for severe spinal stenosis. The spine surgeon was "reluctant" to proceed with that surgery because of prednisone.

When it was all sorted out and done, I still had PMR and on 10mg of prednisone. Actemra (tocilizumab) allowed me to taper off my last 10 mg of Prednisone.

I don't have PMR relapses anymore while being off Prednisone but I still have severe lumbar spinal stenosis.

Do you have a rheumatologist you can ask? I have not got to a point of getting off the steroids yet.

Welcome @dkucan, Tapering off of prednisone can be a challenge. My first time took 3 and half years with the last six months going back and forth between 1 mg and 1/2 mg before I could finally stop taking it without having significant pain the following morning. Most of my pain was also in my shoulders and arms. You might find a discussion started by @dadcue helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Some folks including myself have found it helpful to keep a daily journal of their level of pain/symptoms along with their dosage of prednisone. How long have you been on prednisone for PMR? What was your starting dose?

I am also weaning off steroids. My symptoms are returning, but my doc is not listening at all. My numbers are better, still elevated sed rate! Feel like crap, having lots of neck pain and digestive issues. Since I am having digestive issues and neck pain she believes they are not symptoms of PMR and will not be treating further! Initially I had these same symptoms when she put me on steroids…..I need an astute rheumatologist in Pgh!

@retiredphil

I started Actemra on January 1st 2019 for PMR. It took me nearly 2 years to get completely off Prednisone. I have now been off prednisone for 5 years.

My inflammation markers gradually increased along with a gradual increase in my level of pain whenever I went too long between Actemra infusions. However, I wouldn't say that I had a total relapse.

I still do monthly Actemra infusions without any serious side effects. My rheumatologist doesn't want me to stop Actemra for a variety of reasons.

Actemra put PMR quickly into remission but I needed to stay on 3 mg of prednisone for an extended period of time because of secondary adrenal insufficiency. An endocrinologist expected that my cortisol level to be low because of my being on Prednisone for more than 12 years. The only question was how soon my adrenals would recover. Fortunately, my cortisol level rebounded when given enough time. Actemra doesn't suppress my adrenal function like prednisone did. I'm much better being on Actemra instead of prednisone.

I’m wondering is it better to keep lowering the dosage of prednisone & deal with the pains (if they’re manageable) or should one bump up the prednisone if pains continue for a couple of weeks? I’m at 3 mgs now starting to feel the low back hip pains.
Is it better to continue lowering pred OR is it acceptable for the body to feel increased inflammation ? Dr wants me off pred by March my 1 yr anniversary. I guess I can send this question thru medical portal see what he says. He seems a follow the books when it comes to pred. He hadn’t mentioned any biological etc. didn’t monitor blood pressure or the A1C.

@kare1

Without giving you any medical advice ... I don't think you should force a lower dose of Prednisone if you are having symptoms. I don't think you should automatically increase your dose either.

When I was on 3 mg of Prednisone, I was told that I shouldn't lower my dose AND to refrain from increasing my dose. It was funny ... it never occurred to me that I could stay on a 3 mg dose for a long time. I only thought in terms of increasing or decreasing my dose.

I was on a biologic called Actemra which controlled PMR.

My cortisol level was too low to taper Prednisone any lower than 3 mg.

An endocrinologist said staying on 3 mg of Prednisone was my best option until my cortisol level improved. She said as long as I could tolerate my PMR symptoms AND my adrenal insufficiency symptoms that I should NOT increase or decrease my Prednisone dose. She added that 3 mg was a low enough dose to allow for some recovery of my adrenal function so my cortisol level should improve given enough time.

After 6 months, my cortisol level improved while Actemra controlled PMR. The endocrinologist told me to simply stop prednisone. I didn't think going from 3 mg to zero without tapering was possible either. I did a fast taper going from 3 mg to zero in about a week.

My endocrinologist gave me permission to restart prednisone again if "anything happened" or if I "felt the need" to restart prednisone. She said to consult her first before restarting prednisone but in the case of an emergency that I shouldn't delay restarting prednisone. She just wanted me to keep her informed either way. She also provided me a direct number to call if anything happened after I stopped taking prednisone.

@dadcue thank you for your response!! I think I’ll just ride w/3 mgs for a bit & see what happens.
( I’m not certain when I should try to go to 2.5 in the future then. When I’m not in pain at 3 mgs? )

I’m wondering is it better to keep lowering the dosage of prednisone & deal with the pains (if they’re manageable) or should one bump up the prednisone if pains continue for a couple of weeks? I’m at 3 mgs now starting to feel the low back hip pains.
Is it better to continue lowering pred OR is it acceptable for the body to feel increased inflammation ? Dr wants me off pred by March my 1 yr anniversary. I guess I can send this question thru medical portal see what he says. He seems a follow the books when it comes to pred. He hadn’t mentioned any biological etc. didn’t monitor blood pressure or the A1C.