rituximab

[Kaaswinkel]

any of you has personal or otherwise experiences with rituximab use in combination with prednison.

Like many of us, I keep on “ flaring” when I diminish my dose of prednison. There might be better out ome with a combination. But not widespread a aila le, and expensive. Thanks.

[PMRpro Ambassador]

I have heard the opinion expressed in the last week that rituximab doesnt have much effect in PMR but I don't know where now - although it is used in other vasculitides, it doesn't seem to have a role in GCA spectrum disease.

How low can you go without flaring? The reason you flare is the disease is still active - but this is the fundamental problem with PMR: it lasts longer than most doctors appreciate and there has been no alternative. There is now - Actemra and Kevzara, tocilizumab and sarilumab. If you have PMR, the alternatives are those, not rituximab.

[Kaaswinkel in reply to PMRpro]

Thanks for the advise. I honestly thought prednison was the only viable option!,

I wonder if people with experience re actemra, kevzara, tocillizumab and sarilumab can pl comment. I , and many of us, will apreciate.

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

Maybe raise a new post and ask for info on all the options you have mentioned.

[PMRpro Ambassador in reply to Kaaswinkel]

There are quite a lot of posts about them. The trouble is that in the UK none of them are approved for PMR so the experience mostly comes from people in the USA. Actemra is tocilizumab, Actemra is the brand name, tocilizumab the substance name.

I am on Ro-Actemra (the European name) because I am in Italy and my rheumy can use it. I've been on it about 2 years and got from 19mg down to 7mg. If I try 6mg the bicep tenrinitis returns after 2 or 3 weeks and if left progresses until I can barely use my hands. I also start to feel the adrenal insufficiency at 6mg, at 7mg it is fine.

LemonZest11 has also been on Actemra. she is in Australia. I think she started with PMR but was later diagnosed with LVV. And when reduction is difficult, really that does need to be ruled out.

If you put up a new thread with the drug names in the title you should get Related Posts appearing as well as responses. Alternatively, try searching PMRGCAuk for the drug names. I gather if you click on Posts at the top left of the page and then look at the top right of the page that comes up, there is a search box for PMRGCAuk.

[Kaaswinkel in reply to PMRpro]

Thanks for swift comments. At present not home, but I search when home.

[Kaaswinkel]

but not widespread AVAILABLE and expensive, it should read, sorry.