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Success with Kevzara, but now new non-PMR symptoms.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 16 9:05am | Replies (14)Comment receiving replies
There are no withdrawal symptoms from Kevzara that I am aware of. I don't have any experience with Kevzara. I have experience with "long term Actemra." I have been on Actemra for 7 years but not continuously. I have not been able to stop my monthly infusions of Actemra permanently.
It was easy to discontinue Actemra and no real tapering was needed in the sense of slowly tapering off prednisone. Both Actemra and Kevzara have a relatively long half-life so these medications basically taper themselves over a few weeks.
Neither biologic suppress adrenal function so no worries for the pain caused by adrenal suppression. However the aches and pains caused by poorly functioning adrenals can persist for a long time after stopping prednisone.
I have stopped Actemra for as long as 8 months. My aches and pains gradually returned and got worse the longer I remained off of Actemra. Some of the aches and pains were caused by an exacerbation of pre-existing conditions diagnosed before PMR. Other aches and pains were from newly diagnosed conditions which I never knew I had. Other aches and pains were caused by a return of "systemic inflammation" that couldn't all be attributed to PMR.
My doctor has asked me while I was on Actemra if I needed anything for pain. I claimed that Actemra was controlling my pain. My doctor said Actemra was controlling the inflammation but not all of the pain. She was implying that inflammation "adds to the pain" but there are plenty of things that are called "non-inflammatory" sources of pain. This kind of pain might include structural joint damage and nerve damage.
My doctor said returning symptoms and new onset pain when Actemra was stopped warranted a new investigation of underlying conditions.
The other possibility was that systemic inflammation can slowly re-emerge. This was true in my case and supported by gradually increasing inflammation markers. That was why Actemra was restarted but not all the inflammation was attributed to PMR. Actemra targets elevated levels of IL-6 in PMR but it turns out that elevated levels of IL-6 aren't exclusive to PMR.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4176007/
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@dadcue
Thank you again for sharing your experiences and knowledge you've gained from it. It's incredibly helpful. Just sorry you've had to battle these diseases so long. I'm noticing just from tapering from 25mg, to 22.5 and then to 20mg Prednisone yesterday, that a lot of my upper back, neck pain are here this AM. I noticed a little from the 25 to 22.5mg but this is even more so. I have to admit, I much preferred the "pain free" days. I know they'll be a certain amount of the "old pain" I'll have again and have medications for that. The important thing is to be able to differentiate between the "original" pain I've had for years and the PMR type pain. Luckily ( but not so much), it's pretty easy to remember that brutal pain and know the difference. I'm just hoping that that pain doesn't rear it's ugly head while tapering. Still waiting on prior authz from Ins. for Kevzara, then I'll have to decide whether to start this year or Jan. 1.
Thanks for that link also re IL-6. It's also a really good point that over time, while on these medications, we're continuing to age, and there will be some more deterioration of our bodies. Blessings again.