I have just returned from the Rheumatologist who is working towards adding me to her public hospital clinic in order to access one of a couple of drugs. Since my relapse, we’ve had a bit of a struggle getting back on track. I’m currently off TCZ due to increased neutropenia, which is a bummer because that stuff WORKS!! for me. After initially increasing pred to 25mgs, I’m now down to 10mgs, after being at 4 and a couple of hiccups. My LVV is an aggressive beast and my doc thinks it will be a lifelong battle, hence the trial of new drugs, which are … drum roll … secukinumab or upadacitinib. She briefly raised the idea of leflunomide but noticed my distain and agreed. Anyone tried either of these? PMRpro, your thoughts?
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LemonZest11
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Don’t think you’ll get many replies from UK, probably more from US and sure PMRpro will give her valued opinion… hopefully what ever you decide on works for you.
They seem to be getting quite excited about the JAK inhibitors - that's the second one. The first is a monoclonal antibody (like TCZ) but I think used where the TNF inhibitors like Humira have been used but with a different mechanism. It works on IL-17 rather than IL-6.
Seems to have a reasonable effect according to this German study
Yes, she’s very excited about the second one because, as she explained to me but I didn’t really understand, it is quite potent in the way it works in multiple ways. She went on but to me it was a bit blah, blah. You should have been with me to interpret. That lancet article looks promising and she did mention that trials were providing some positive results. It will take her a few weeks to get approval, if she’s successful, for me to be publicly funded but in the meantime I just have to continue with the slow taper. I guess I have nothing to lose, since I’m in it for the long haul. Thanks for listening.
Wish I was there to observe!!! The trouble is, they are all promising but they still costalotto so public systems will kick and scream. But LVV after PMR or GCA seems to me to be becoming more common now they are looking more closely - and pred alone doesn't seem to be enough, I'm not convinced MTX and LEF do a lot.
Neither is she, said there is a distinct lack of evidence. Anyway, we’ll see if anyone from the US has experience with these new two. Love that, costalotto!! Haha!
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