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I keep relapsing when I try to get off prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Jul 11 12:42pm | Replies (82)
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@tadatada1

I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg ) As I tapered off this time I started kevzara The pain I have now is different. My medial knees my butt cheeks and neck but not scapular. I cannot get up from the floor and climbing steps is difficult due to week legs My blood test this week dropped to 2.8 from 3.4 two weeks ago 4 weeks ago 2.4 and 6 weeks ago 3.8 for WBC In the past when I tapered off prednisone and my PMR returned my sed rate increased. Right now my pain is different and my sed rate is < 1 I have gained weight. I am afraid dr will tell me to stop kevzara due to low WBC I really was hoping my weight and most pain will decrease when adrenals start working and produce cortisol
Hope the call from dr will not stop Kevzara

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Replies to "I have finally reached zero prednisone starting today ( 20 weeks starting at 10 mg )..."
tuckerp | @tuckerp | Jul 3 7:19pm

yes . some data says it can take 6 months for your cortisol to kick in. But I think most of us feel those pains. The medically accepted term is adrenal insufficiency but it leaves all of us with some adrenal fatigue. The months on steroids has greatly slowed your bodies cortisol response. My aches and pains are less now after 2 years but I still feel some adrenal fatigue. I wonder that will ever go away.
https://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906?fbclid=IwZXh0bgNhZW0CMTAAAR1pKJfgPIxS0nQhbndKGMcfjns72kJFiUWFqD3409SdcH9qPtMX86mJXYE_aem_ayl70UvzfP5plcUb2jrCJw

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tuckerp | @tuckerp | Jul 3 7:29pm

I might add. I sent you a link about adrenal fatigue. As it points out in that Mayo link, PMR may have also been hiding symptoms of other conditions. I think many have found other things pop up. Its important to follow through with your Dr. to rule out other conditions. Hope you feel better. It does get better...

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DadCue | @dadcue | Jul 4 7:41am

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.

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