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After remission ... has anyone discontinued Actemra or Kevzara?
Although I don't have any problems with Actemra for PMR ... I don't seem to be able to discontinue Actemra. I'm very happy to be off Prednisone for the last 3 years. As an added bonus, I was able to discontinue 3 blood pressure medications and Atorvastatin all of which were treating Prednisone side effects. A thirty pound weight loss might have helped me discontinue these medications.
Now I wonder if I will ever be able to discontinue Actemra. I seem to be heading in the wrong direction for stopping Actemra. I started with injections every two weeks 5 years ago. My injections were increased to weekly a year later.
For the last couple of years, I did an infusion every 4 weeks. The infusion interval was stretched to every 5 weeks but every 4 weeks was better. I tried a 7 week interval once but my ESR and CRP were both elevated after 7 weeks. Pain was slightly more but not like a flare. My rheumatologist said I need to stay on Actemra infusions every 4 weeks.
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My rheumatology visit went well but now gout has been added to my list of inflammatory conditions.
As for stopping Actemra (tocilizumab) --- it doesn't seem like it will ever be stopped. Now that gout has been diagnosed ... Actemra might help gout too.
"Extensive research has elucidated the close association of IL-6 and its receptors or their mediated signaling pathways with gout and their contribution to its pathogenesis [9], [10]. The efficacy of treatment has been validated with the introduction of tocilizumab (TCZ), the first approved biologic agent targeting IL-6 and its receptors, demonstrating promising clinical responses in individual cases with refractory tophaceous gout and crystal arthritis [10], [11], [12], [13], [14]. Furthermore, inhibition of the IL-6 and its receptor-mediated signaling pathway has been shown to attenuate gouty immune inflammatory responses [15], suggesting that targeting IL-6 and its receptors or modulating their mediated signaling pathways may offer a novel approach and direction for gout therapy, indicating that blocking IL-6 signaling has the potential to treat these diseases."
https://www.sciencedirect.com/science/article/pii/S1043466624002084#:~:text=In%20most%20current%20studies%20on,in%20the%20adaptive%20immune%20system.
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The association of gout with PMR is also interesting.
"Contrary to our hypothesis, gout was independently associated with a 2.1- to 2.5-fold higher risk of PMR in elderly Americans who were recipients of Medicare. This does not imply a causal relationship, only that an existing diagnosis of gout was associated with a higher hazard (risk) of a new PMR diagnosis"
https://pmc.ncbi.nlm.nih.gov/articles/PMC6649982/
"We speculate that based on these studies, some disease mechanisms of PMR and a strongly associated condition (giant cell arteritis) have similarities to those in gout. Increased production of IL-1 and IL-6 in both conditions might represent one of the common pathways for gout and PMR that plays a role in pathogenesis of these conditions."
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To my knowledge ... my uric acid level was never checked until I had kidney stones that were composed mostly of uric acid.
Does anyone else have PMR and gout?
If it isn't one thing it is another thing. In my case, my rheumatologist says it is a full spectrum of things!
Four different rheumatologists came into my room when it was determined that I had gout ... they all wanted to see the evidence.
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1 ReactionKevzara Connect cut me off as well. Compared to you I guess my insurance company offered me a "great" deal: $1373 a month for Kevzara. I can't afford that. My doctor did an exam looking for evidence that I that I have GCA (giant cell arteritis) so he could get me on Actemra, which works similarly but is not Medicare approved for PMR. He is going to see how I do without the Kevzara and possibly do some "creative documentation" to get me on Actemra if I regress. I do have a headache at my temple and have had a biopsy to look for GCA. I might be one of the 25% of people with PMR who have sub-clinical GCA.
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2 ReactionsWhat is sub-clinical GCA?
As I understand it someone did research and did scans or ultrasounds of some arteries of patients with PMR and found changes that looked like GCA but the patients did not have symptoms. I do have one of the symptoms, a headache at my temple that wraps partway around my eye, but a negative temporal artery biopsy. Who knows what is going on with this disease!
Generally speaking it is patients without outward signs and symptoms suggestive of GCA. However, when other means of detecting GCA are used like temporal artery biopsy and/or ultrasound, GCA is discovered.
https://pubmed.ncbi.nlm.nih.gov/37129541/
It basically means people can have GCA and it isn't detectable. Even temporal artery biopsy and ultrasound aren't 100% reliable for diagnosing GCA.
I have never been officially diagnosed GCA but there was some evidence that I might have it somewhere. Large vessel vasculitis (LVV) isn't confined to the temporal arteries so that opens up other areas to look for vasculitis. It was one of the reasons why I was approved for Actemra. The recommendation was to "assume vasculitis" and treat me "as if" I had GCA.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9115766/
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I actually had all the signs of symptoms of GCA but they could be explained by other conditions. Uveitis for the visual disturbances and trigeminal neuralgia for the facial pain. Both of these condition had an inflammatory component and were exacerbated when my inflammation levels were too high. Both of these conditions responded well to prednisone. These two conditions responded better to prednisone than PMR did!
14 years ago my husband woke up blind in one eye. No symptoms at all. It turns out he had GCA ( confirmed by subsequent biopsy) he never regained his eye sight and the GCA simply went away.
Go figure.