Have you heard of Kevzara aka Sarilumab?

[Winnie311]

I am just forwarding a message from my husbands nursing cousin from Canada. She was asking if I was taking Kevzara or had had heard of it. (No was my answer to both?’s)

Says

No more side effects from prednisolone, hair loss, weight gain, fatigue

[PMRpro Ambassador]

We've heard of it and have posted about it. Unfortunately, although it is approved in the USA for PMR, it isn't approved in the UK. It is a biologic. like Actemra which is approved for 1 year in GCA, and works on the same underlying cause of inflammation but in a slightly different way. That means it is very expensive still.

All drugs have side effects - I'm on Actemra but can't really say I've identified any real problems. However, it is unlikely to get everyone entirely off pred. I've been on it for nearly 3 years but still need 7mg pred to prevent the return of PMR symptoms. After 3 weeks on 6mg I find the bicep tendinitis is getting to a very uncomfortable level and have to go back to 7mg where I am fine.

[Winnie311 in reply to PMRpro]

Ahh I see. Thanks very much PMRpro for explaining.

[PMRpro Ambassador in reply to Winnie311]

PS - did you see my reply before I added the second paragraph?

[Winnie311 in reply to PMRpro]

Oh no I didn’t…. Oh gosh poor you, does that mean you need 7mg for a long time?

[PMRpro Ambassador in reply to Winnie311]

I've been on pred for 16 years - 7mg is a low dose for me!!! I'm fine about it as long as it works!!

[Winnie311 in reply to PMRpro]

I can remember reading you have been on it a very long time 🥲 so I’m sorry for you that may always need to stay on 7mg. Though as you say, better that than still suffering. You are an amazing lady.

[PMRpro Ambassador in reply to Winnie311]

Actually the adrenal function is a big a limiting factor - after all this time that is going to be hard work too.

[Winnie311 in reply to PMRpro]

🥲

[Ridge in reply to PMRpro]

Oh PMRpro I’m so sorry. That is tough. I guess we are all so different. It keeps you with us 🥴. We couldn’t do without you! Happy Christmas to you and yours.

[PMRpro Ambassador in reply to Ridge]

I'd probably not leave even if I got off pred. DorsetLady is still here!!!! But I don't find it too bad - there are a lot worse things to have. If you don't believe me have a daunder through posts on VasculitisUK or LupusUK - makes you appreciate PMR and GCA!!!

[SnazzyD]

Yes we have heard of it. It works against one type of pro-inflammatory cytokine, Interleukin-6. Two snags with it, it is extremely expensive and in the UK at least its use is controlled. No doubt PMRpro will know what the rules are regards eligibility for PMR and give some success rates. The other snag is that inflammation in PMR/GCA can be caused by a few other inflammatory substances, so depending on what yours is driven by, it may or may not be useful for you. If you have a predominantly IL-6 driven disease your Pred dose may well be reduced more quickly but possibly not completely. Pred has the ability to mop up all the other types which is why these biologics are often called steroid sparers.

Another issue that is not Pred related directly is that under 10mg when people can suffer from adrenal insufficiency. This is a by-product of having suppressed adrenal function on higher doses. Until it returns one can feel horribly tired and a bit ill. This can mean the reduction pace has to really slow down to avoid an adrenal crisis. These Steroid sparing drugs don’t help with that.

[PMRpro Ambassador in reply to SnazzyD]

Don't think it is even approved never mind funded. Sarah didn't seem to think it was likely to be either - I suspect since too many of the mindset that PMR only lasts a couple of years.

[suzy1959 in reply to PMRpro]

How about recommending it for those of us who have had PMR for over 10 years???

[PMRpro Ambassador in reply to suzy1959]

I suppose that is what Sarah was getting at - too many who believe if you have had it for 10 years, it isn't PMR. I don't care what they CALL it - it responds to pred and an IL-6 inhibitor get me off the high dose of pred. SO - where is the problem?

[suzy1959 in reply to PMRpro]

Quite!

[Winnie311 in reply to SnazzyD]

Thank you SnazzyD

[Kafkaontheshore]

Hi,

I take Sarilumab but for GCA. I had the allowed one year Tocilizumab and then was switched to this. Been on it over two years now. No problems but still no end in sight for my GCA I’m afraid. As others have said it’s not licenced for PMR in the UK yet

[Bramble2000]

I don’t think we can get it in the UK for PMR.

[Myfoe]

I have been on Kevzara for 12 months I was unable to get below 8mg of prednisone it has allowed me to get to 5mg but once I went below 4.5mg I had a big flare I am just recovering from, I have not had any obvious side effects but it is crazy expensive $48,000 for 12 months of injections no way I could afford it without insurance and Kevzara copay card

[artfingers]

Well, for those in the U.S. you could TRY to get on the patient assistance program with Kevzara but many have just been "kicked off" of it for 2025 due to changes in Medicare where the max we have to pay for drugs will be $2,000 out of pocket in 2025. The other possibility is IF your health insurance will cover it, then you can pay for the initial dose or two up to the "out of pocket" limit of $2,000 U.S. per year and then the rest should be fully covered. (Medicare also allows you to spread that $2,000 for 12 months). I plan to do that in 2025. I do notice that even with Kevzara, I can't get below 4 mg (more likely 5 or 6) but I'm just figuring that out at the moment. Tried to drop to 1.5 mg prednisone but flared. I did the "flare protocol" and am back now at 4 pred (3 in a.m. and 1 in p.m.). We'll see if that works for now. Without prescription insurance or being on the patient assistance program, I agree, it is just too expensive.

[PMRpro Ambassador in reply to artfingers]

I'm on Actemra and stick at 7mg - after a few weeks at 6mg I get bicep pain, tendinitis probably. One of the other mechanisms for inflammation must be going on as well as IL-6 but at 7mg and 2 weekly Actemra injections, perfectly stable. And 7mg is a lot better than 19mg where I was stuck before. And no adrenal wobbles either.