Reporting back re new drugs …

[LemonZest11]

Hi there fellow Travellers,

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?

[DorsetLady PMRGCAuk volunteer]

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.

[LemonZest11 in reply to DorsetLady]

Thanks DL. I’ll leave the decision to her. 🤞

[PMRpro Ambassador]

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

thelancet.com/journals/lanr...

It will be interesting to see how you get on.

[LemonZest11 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to LemonZest11]

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.

[LemonZest11 in reply to PMRpro]

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!

[KRBcat]

Hey, was just looking for some info on secukinumab and came across your post from a few months ago.

I also have LVV, Takayasus, and I’m not responding to any of the many treatments (other than Pred) they have given me. These have included TCZ, adalimumab, Rituximab, LEF, still on methotrexate for now too..

This is now the next one to try and was wondering if you got it and how it’s working for you?

Hope you’re well!✨

[LemonZest11 in reply to KRBcat]

Not yet. I have entered my doc's public clinic through which the trial will happen, but still waiting for approval. I have a private appt with her on Wednesday, so will report back after that. It's a bit of a pain, this LVV, since it doesn't give side-effects so it's tricky to monitor.

[KRBcat]

It’s scary. I’ve been having chest pain and pains down left arm and right leg this ‘flare’. Thought I was having a heart attack at one point. But as I’m coming to realise that by the time it’s bad enough to feel, it’s in need of high dose Pred and a med change and start all over again. Everything takes time too and similar to you I’ve have to wait. a team decides on next best steps as there is no guidance on this like there is on more common diseases then it’s Time for the drugs to work. There is no quick fix.

I should hopefully be starting secukinumab within the next few weeks as they've got the go ahead so will let you know.

I really hope you get some info on Wed and get started on something soon. Good luck, keep me posted.. ✨

[LemonZest11 in reply to KRBcat]

Thank you, and same to you. At least sekukinumab doesn't mask blood tests in the was tocilizumab does so monitoring inflammation through blood tests should be more accurate. Tocilizumab worked so well for me but it impacted neutrophils so had to stop. That’s when we discovered the LVV had flared and I have damage to a leg artery but not enough to really bother me. Alk the best on your journey, you and I might be the next test pilots 😄.