Kevzara (sarilumab) is approved in the UK for the treatment of polymyalgia rheumatica (PMR):

[pmrdec112014]

Is anybody receiving this for PMR?I have been researching treatment for very long standing PMR, as sick of taking steroids, even though after latest flare in exactly 10 years of PMR feel good back on 8 mgs and feel strongly that I meet the criteria for receiving this if it is indeed licensed but not even my email contactable rheumatologist has mentioned it??!!

[PMRpro Ambassador]

Are you sure? Sarilumab is approved for use in RA in the UK but hadn't been for PMR. I can't find anything about it in PMR for the UK - it has been FDA approved in the USA for about a year but although approved for PMR in Europe it isn't used much as far as I know. That isn't the same as NICE approving it for use in the NHS as that depends on a lot of other criteria. Prof Sarah Mackie was of the opinion last year it was unlikely in the foreseeable future. Prof Dasgupta was a part of a study showing its value in PMR - studies are used to support NICE applications.

I use tocilizumab - I'm not in the UK - for PMR and it has allowed me to get from 19 to 7mg pred but no lower. It works on the IL-6 cytokine which causes most of the inflammation in PMR and GCA - but there are at least 3 different causes of the inflammation and if your version of PMR or GCA involves them, the sarilumab or tocilizumab won't fully control the inflammation and you still need pred. Had I been on 8mg pred, I doubt either my rheumy or I would have considered starting the tocilizumab. Biologics aren't sweeties, the risk of infection is increased by using them, not that I have had any problems so far, and some rheumies suggest to patients they need to be very careful to avoid situations where you might catch flu or Covid for example.

[Pixix in reply to PMRpro]

I guess that, by taking it, you have to accept virtually shielding,especially in the winter when more bugs are around. Bit of a tradeoff that most wouldn’t want, maybe. I think people don’t like steroids (who does) & think biological are like much better drug which will get long termers off quickly! I’m in my sixth year now, but I’ve ’played the good taper’ game & am now down to 1mg! Took 3 three tries from 5mg downwards. Sticking there now, as new medical issues arising. I had 3 vials of depo medrone pumped into me before Christmas, but I guess they have given me extra energy…cooked the Christmas meal at my bad time if day, without help!! S xx

[PMRpro Ambassador in reply to Pixix]

No. I don't and it has never been suggested. Seems to depend on the rheumy. Given the number of people who are on biologics for rheumatological conditions there would be far fewer people around!! But shielding is not practical for anyone who lives alone here - they would starve.

[Pixix in reply to PMRpro]

You’re right…it’s easy for us…haven’t been in a supermarket all year. No need. It’s picked, packed & delivered free…why would I want to go & do all that! Plus the cold in the supermarkets is too bad. I had a few falls due to that & always had to use a wheelchair. I don’t mind that, but I’m too short to reach anything! Met some lovely tall men that 2AG, though!

[PMRpro Ambassador in reply to Pixix]

I fetch my own or I go without. You can buy tourist type food online ...

[Pixix in reply to PMRpro]

That’s Italy…still has the little sweet grocery on every village corner! We’ve never stayed far fro one…but I hope you have friends there who would help you if you were sick!

[PMRpro Ambassador in reply to Pixix]

We have a shop in our village - by no means all do these days - but you still have to get to it. Probably - though the most likely don't drive and aren't close neighbours.

[Pixix in reply to PMRpro]

Hm…perhaps need to think about that move back across the Channel…brain tells me there was going to be a house with a granny annex??! Or did I dream that? My neighbour & I let each other know when next supermarket delivery is & get stuff in for each other regularly…but then they’ve become good friends,not just great neighbours! S x

[PMRpro Ambassador in reply to Pixix]

Oh yes - but getting builders to shift into gear with plans is being problematic. One of 3 is advertising on the community page in FB - they replied to my email telling them my phone no was different, not a sausage more. But looking for work ... Left it to the architect.

[Pixix in reply to PMRpro]

Hm. Frustrating. But I’ve no doubt you will solve it/them!! If you’ve got planning permission that’s a good step forward! Good luck, S x

[PMRpro Ambassador in reply to Pixix]

That's the trouble - I haven't yet because we don't know exactly what will have to be covered. They couldn't start building before mid-March really but I'd hoped the planning stage would be almost over by now.

[Pixix in reply to PMRpro]

Oh, right…trouble w found when we moved was that the planning stage took forever (well, seemed like it) but may be quite different north of the border! Mid-March isn’t really that far away, tbh. Fingers crossed, S xx

[PMRpro Ambassador in reply to Pixix]

There seemed loads of time when I started - at this rate it'll be next winter before the get going!!!

[Pixix in reply to PMRpro]

It’s not right! We had to wait to get permission to knock down a 60’s garage with an asbestos roof when we moved here…& you would have thought it was a good idea! Good luck, S x

[PMRpro Ambassador in reply to Pixix]

That might have been the asbestos???

[Pixix in reply to PMRpro]

Nah…they thought that the larger building we wanted to out there may be turned into overnight accommodation (by us). Very hard persuading them it wasn’t, isn’t & wont be…though we could make £120 a night if we just modified it a bit! Perish the thought!!

[piglette]

In October 2024, the Committee for Medicinal Products for Human Use (CHMP) recommended changing the marketing authorization for Kevzara to include PMR. I am not sure how far that has gone though.

[PMRpro Ambassador in reply to piglette]

That's one thing - but even if it is available here, and I'm fairly sure it will be here in Italy, that doesn't mean that NICE will cough up to approve funding for it in the UK.

[DorsetLady PMRGCAuk volunteer]

It might be approved, but actually getting it prescribed is probably a very different thing…🤨

[pmrdec112014]

Ok thank you. I get what you mean about funding and also risks etc.I will may be ask Dr Hughes when I email him.

By the way PMR Pro he did respond to my first email that told him I had increased my dose and my.plan to reduce again after two weeks but not to a further email to inform him I wasn't doing too good and that I had to increase further and what to do next.

Hopefully after new year he will catch up with email lag and respond further.

[darkred]

I injected my first dose of Kevzara just 4 days ago. I do have some mild symptoms that might be related to the medication (or maybe not). Legs more wobbly today, but I persevered in doing a major shopping trip for groceries, being more careful with my movements. I had expected that Kevzara might have some major side effect! This did not happen. I'm grateful that my rheumy has prescribed Kevzara, as I now have hope. I will report on future progress for those who are interested in knowing more about this drug.

[pmrdec112014 in reply to darkred]

Hi.Are you in the UK?

How long have you had PMR?

Would you mind telling us your story?

What dose of pred are you currently on??

We all ears if you in UK!!

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

No, darkred is in the US - says on profile 😊

[pmrdec112014 in reply to DorsetLady]

Yes I was a bit slow to look at profile and looked after I posted.Oh well hopes raised for a little while. Have to stick with good ol' pred for a while longer then!

[darkred in reply to pmrdec112014]

Oh yes! It will be a long time before I come off pred and I'm hoping that Kevzara helps me to be successful (sooner rather than later).

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

No worries.. didn’t want you to get your hopes raised, so yep … keep plodding on...😊

[PMRpro Ambassador in reply to darkred]

I'm on Actemra - it also has caused no obvious major side effects on starting it. The possible major side effects seem to take time to establish and probably aren't what you would expect - the monitoring is important.

[darkred in reply to PMRpro]

Good to be aware of this. It makes sense that it must build up in one's body.

[sidra1968 in reply to darkred]

Please do. I wonder if my insurance would cover it...maybe

[darkred in reply to sidra1968]

Mine went before a Blue Cross Review Board meeting after my rheumy ordered it and after I contacted Blue Cross. They are covering it. If your insurance does not cover it, you can contact Kevzara. I didn't go this route, but a nurse at a special pharmacy suggested (after Blue Cross had approved) that I could have taken that route! The injectable Kevzara was then shipped to me in a special box containing dry ice. The special pharmacy alerts you about when you should expect it to arrive at your door. I inject myself every 2 weeks.

Out of pocket, I would not take it. I'm not a millionaire.

[sidra1968]

Yep, I have seen I could contact Kevzara if need be. Thanks for responding and I really hope it works well for you!