I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22 1:06pm

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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

tuckerp | @tuckerp | 3 days ago

In reply to @tadatada1 "Can you explain as in your note how I find the link you wrote you sent..." + (show)

https://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906?fbclid=IwZXh0bgNhZW0CMTAAAR1pKJfgPIxS0nQhbndKGMcfjns72kJFiUWFqD3409SdcH9qPtMX86mJXYE_aem_ayl70UvzfP5plcUb2jrCJw

tadatada1 | @tadatada1 | 3 days ago

In reply to @tuckerp "https://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906?fbclid=IwZXh0bgNhZW0CMTAAAR1pKJfgPIxS0nQhbndKGMcfjns72kJFiUWFqD3409SdcH9qPtMX86mJXYE_aem_ayl70UvzfP5plcUb2jrCJw" + (show)

Thank you for replying and sending the link

DadCue | @dadcue | 3 days ago

In reply to @tadatada1 "I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg )..." + (show)

Having a low WBC while on Kevzara might be "transient." I experienced mild neutropenia on Actemra which is another IL-6 inhibitor similar to Kevara. My rheumatologist said neutropenia is a common side effect of IL-6 inhibitors, but not usually associated with an increased risk of infections.

It might not be necessary to completely stop Kevzara because of a low WBC. Sometimes skipping an injection rather than completely stopping Kevzara is all that is needed.

Congratulations on getting to zero Prednisone. I hope things continue to improve. Prednisone has a way of masking pain that isn't always caused by PMR. When I got off prednisone there were some underlying conditions that I didn't know I had. Those underlying conditions are being treated with other interventions.

I have remained Prednisone free for the past 3 years and my overall health has improved dramatically. The improvement in my overall health didn't happen as soon as I stopped prednisone---it took some time.

I still do a monthly infusions of Actemra to treat PMR. I took Prednisone daily for more than 12 years for PMR. It was a great feeling to finally discontinue Prednisone. I know my adrenals appreciate not being suppressed all the time by Prednisone.

hiking2552 | @hiking2552 | 3 days ago

I am slow tapering - 1 mg every 4 weeks. My rheumatologist said if symptoms return go back to prior dose for 2 weeks & try again. So far it’s working for me. I am at 7 mg.