Kevzara (sarilumab) to treat PMR

[BuddyBearF]

I am 54, diagnosed with PMR June 2022 but symptoms started Nov 2021. I have tapered Pred to 8mg and most days my pain is around a 2 or 3 out of 10. Reasonable, I felt for active PMR and I'll take Tylenol Arthritis to help with pain if needed. But, my Rheumatologist wants me off Pred ASAP. He wants me to take Kevzara and says studies have shown that it gets rid of PMR and the drug should be approved to treat PMR by this spring. Has anyone been part of the trials and/or had experience using this drug to treat PMR?

[piglette]

I believe Dr Dasgupta has seemed quite impressed with Kevzara, but there is limited research so far.

[BuddyBearF]

Thank you for your response and so happy you have found non-Pred relief. I will try to the find the study he referred to, but he said they are finishing up the studies and it should be approved for PMR as early as the spring. He said the trials with PMR patients went very well and the drug is very promising. The rep was there yesterday. It is a drug that he is already using for his RA patients and he has seen great results. It is a biologic, which I know nothing about...is that the type of drug Actemra is?

[PMRpro Ambassador]

I believe it was used in a very small trial in Dublin - but it did seem to work.

The Phase 3 clinical trials were terminated early because of recruitment problems during Covid but the results do look promising. Whether they are enough for regulating authorities to grant approval is another matter.

ard.bmj.com/content/81/Supp...

clinicaltrials.gov/ct2/show...

lists the study as first results having been posted in June 2022.

rheumatology.medicinematter...

I have to say - I'd be surprised if the final stages of approval are completed as soon as the spring but who knows.

[BuddyBearF in reply to PMRpro]

Thank you!

[Hidden]

I'm guessing you're in the US due to you using Tylenol, which we don't get in the UK....ours is Paracetamol. I googled Kevzara, it's in combination with Methotrexate. I have been offered this drug to help wean myself off the Pred. Don't want to take it and prefer to just taper slowly and see how I go. I'm in my third year taking Pred. How long have you been on it ? All the very best to you.

[BuddyBearF in reply to Hidden]

Yes, I am in the US. I've been Pred for 4 months. I would not take MTX with Kevzara, just continue to taper Pred. But at faster pace.

[Hidden in reply to BuddyBearF]

Really the slower the better. I’m in my third year and for the past yr only tapering by 0.5mg per month. Fingers crossed it’s working so far for me. I had both PMR/GCA

[PMRpro Ambassador in reply to Hidden]

If you are put on tocilizumab or sarilumab you will be able to reduce more quickly - at least until you get down to the realms of adrenal function needing to wake up!

[Hidden in reply to PMRpro]

Have you taken and it's around 4mg for adrenal function....is this correct ?

[PMRpro Ambassador in reply to Hidden]

I'm on tocilizumab, sarilumab does the same thing. I have reduced from 19 to 8 mg in about 5 months.

Depends on the person - some people start struggling with adrenal function as early as 9 or 10mg pred.

[BuddyBearF in reply to PMRpro]

Is Tocilizumab approved for PMR? There's a chance my Dr won't be able to get approved for me.

[PMRpro Ambassador in reply to BuddyBearF]

Not really no - it has been through clinical trials for GCA and is approved everywhere for that, though in some countries with limitations and strict criteria. It has been used off-label quite a bit and there have recently been 2 studies using it in PMR, one European study on new onset cases and the other in France only I think in relapsing cases. It looks good in both, My rheumy participated in the first so arranged for me to try it after 13 years on pred and 18 years of PMR. It seems to be working.

[LemonZest11 in reply to PMRpro]

That's brilliant! You've done so well so far. I'm past the adrenal bit I think, down to .75mg after many months at 2mg, 1.5mgs etc. My Rheumatologist now wants me to stretch out the TCZ jabs to 4 weekly, but I'm not prepared to do that yet. Still experimenting with reducing pred, even though initially I thought I'd stay on a low dose after a flare at 0.5mg, however that was also after several 3.5 weekly TCZ jabs. It's now a balancing act, too little pred or too little TCZ? I'm thrilled for you though, adrenals behaving?

[PMRpro Ambassador in reply to LemonZest11]

I suspect I may just be getting there!!!! Getting more difficult to drag myself out of bed but I have been sleeping far better than for years on any dose of pred. The rheumy said he doesn't expect me to get below 5mg pred anyway though. We'll see.

[LemonZest11 in reply to PMRpro]

Gread news Pro. Let's see about the limit of 5mgs, if anyone knows how to be patient, it's you. Even though many have reduced quickly with success, I have been one to take it slowly, reducing by .25mg now, monthly at the earliest. I'm actually rapt for you. 💪

[Sharitone in reply to PMRpro]

Is that the lowest you've been for years? How exciting! I hope your adrenals behave nicely!

[PMRpro Ambassador in reply to Sharitone]

Probably for at least 6 years! Could be longer. Not holding my breathon the adrenal front though

[BuddyBearF]

Does Actemra help your PMR symptoms?

[BuddyBearF]

That's wonderful it is working!

[Hildalew]

Interesting - you have a different narrative from what happens to the adrenal glands when Pred appears in the body, from that which supports the 'slow taper' practice.

[artfingers]

What I have loved about "trials" and my local teaching hospital's studies is that they have allowed me to get tests and things completely free. Not sure if that is the case in the UK? I did an Alzheimer's study that allowed me to get a free brain scan (I think it was PET but all I recall is it involved radioactive dye that they brought in in a lead lined container!). Thankfully it showed no plaque or brain shrinkage, phew! I also got to do other trials/studies, again totally free.

[PMRpro Ambassador in reply to artfingers]

Almost all of them are free in the UK in any case so less of a benefit in that way. But you might get some you wouldn't expect!

[gee_biker]

I was put on Kevzara as soon as it was FDA approved in the US primarily to support Prednisone reduction for PMR symptoms (it's been difficult to get below 16mg/day). I've just taken my 3rd dose and pain level seems to have reduced some in the last week but we'll see if the trend continues. I have yet to start tapering the Prednisone while ramping up on Kevzara but should do so soon. Interested in anyone else currently going through the process . Based on what I've read, I'm optimistic.

[PMRpro Ambassador in reply to gee_biker]

This is an older thread so few people are likely to see your question because of the way HU works, Only I and DorsetLady follow everything and only people who actively follow a thread get notifications after they originally see it.