Does anyone know anything about tocilizumab?

[Lonsdalelass]

Hi everyone, I've been reading a bit about a new drug that has been trialled to treat GCA and hopefully PMR, called Tocilizumab. If it proves successful it might mean we wouldn't steroids anymore, and all those nasty side effects. Have also heard its expensive ......no surprise there.

[Longtimer]

Think some people on here take it for GCA.....and also think it's other name is Actemra....normally used for RA...sure you will get replies soon from members on here using it maybe....

[Ruadh]

Have just checked out its side effects - Hmmmmm.

[PMR2011]

I have been on Actemra for about a year (PMR in 2011, GCA 2017). I am very happy with how it has worked for me. Am on 1mg Pred soon to be off. Have had no side effects to speak of. It did take 4-5 weeks before it worked (weekly self injection). It is very expensive but there are various schemes the company (Genentech) has to assist. Very long list of potential side effects to watch out for and still have to be very concerned about preventing infections. It is certainly an individual choice.

[PMRpro Ambassador in reply to PMR2011]

The Genentech assistance is only in the USA - it does not apply anywhere with statutory health cover.

[SheffieldJane]

If you type Tocilizumab or Actemra into the search box you will see that there have been numerous discussions about its use in our conditions. In the UK it is used mainly as a steroid sparer in GCA and atypical cases of PMR. It is more widely used in the US I think.

[Lonsdalelass in reply to SheffieldJane]

Thank you SheffieldJane.

[PMRCanada]

It’s approved for use for RA and GCA in Canada. I was hopeful to perhaps try it as it is covered by my healthcare benefits provider, but alas, my diagnosis is PMR.

[Lonsdalelass in reply to PMRCanada]

Thank you PMRCanada

[Mks9558]

I started on October 30th of this year for GCA; had my 3 rd shot this week ( shots are weekly) meant to help reduce prednisone quickly not replace initial high dose. There have been relapses though not as high a % . I have not had any side effects. The manufacturer supplements cost in the US I pay a $5 co pay per weekly dose that’s it. Cost is quite high without that supplement however, Over $15k+ USD per year. Has been used for RA longer than for GCA. It is NOT approved for PMR. There are not any long term studies to speak of at this time. Was approved for use in UD for GCA in May of 2017.

[Lonsdalelass in reply to Mks9558]

Thank you Mks9558, helpful to know. X

[Blearyeyed]

Hi,

I just wrote an answer about it to a member called Daisychain if you want to look at it. Referred under its brand name Actemra.

It gives more info on why they choose it and use it.

Here in the UK , it is beginning to be understood as useful in treatment of many different autoimmune and autoinflammatory conditions apart from arthritis and seen as beneficial , but only for patients with special medical need for treatments other than steroids ,this is partially because of the limited studies to prove its effectiveness in certain conditions so far , and mostly because of cost and practicality.

Choosing this drug is based on limits, based on the effectiveness of steroid medication on your condition, or other medical reasons that make long term steroid use a poor choice for a patient because of other medical conditions.

It is usually considered less practical as a first choice treatment because it is given via IV or injection, although highly effective for many it can have its own long term affects on your body and does interact with a large number of other drugs which often limits the possibility of use for some patients.

[Lonsdalelass in reply to Blearyeyed]

Thanks for that, I'll take a look. X

[Bessieeyes]

Hello Lonsdalelass, I had PMR which progressed into GCA after 3 months. This started in September 2013. I had a completely horrendous time with it all (won't bore you with all the details) but was asked to trial Tocilizumab for the drugs company Roche back in 2014. I was on the trial for a whole year - it was a double blind trial so that neither myself nor the clinical research team knew if I was actually on it. I was really ill during this time. At the end of the year it was revealed that I had, in fact, been on a placebo (just my luck!). Roche were really appreciative of my sticking with the trial and sponsored me with the actual drug. Toci was not available for GCA use in this country. I had to self inject each week and it TRANSFORMED my life. I was still on steroids, which had to be cut down and I struggled to do this as I was getting a flare up from them. However, I went cold turkey and suffered the consequences (pain, stiffness, etc) but came off them completely. I carried on with the toci until December 2017 where it was deemed that I was in remission. I stopped it completely. Touch wood, my health is now great (I am 61 years old), I teach full time, look after my two horses, walk up hill and dale blah blah blah. One of the worst things about PMR/GCA was living in the reverse nightmare of being in pain, being so fat (I went from 8 stone to 11 stone), people saying to me 'oh my god, I didn't recognize you - you look so different!'. Err, yes its the steroids, my face is swelled up to the size of a pumpkin.................. I would recommend that you insist on getting this drug....it works with immediate effect. If you have been on the usual steroid route, it does take time to get your body back to normal which is really frustrating but I have managed to get there - god knows what would have happened to me without toci as my life was a nightmare. Of course, there is a massive list of side effects to consider but IT WORKS. Much love to you, wishing you well.

[Lonsdalelass in reply to Bessieeyes]

Hi there Bessieeyes, that's really good to know, someone who has experienced this drug. I am taking it all in. Not that I have been offered it of course and may never, but just wanted some feedback from those who know. I don't expect it is an option for all. Thank you. X

[technogran in reply to Bessieeyes]

Hi there, I've been on a trial for Actemra since December 2018 for GCA but had to come off twice as I had infections and had to wait a week after my antibiotics were done. I can't yet say whether it has helped or not and have had a couple of flare up during steroid tapering but your experience has spurred me on. Well done you!!

[Lonsdalelass in reply to Bessieeyes]

Hi again Bessieeyes, just an update, I had an appointment with my rheumy and asked about Toci, but the hospital doesn't administer it so no luck with me trying it I don't suppose. Touch wood, I am getting on ok with the steroids apart from usual side effects, but am managing to reduce OK so far.

[PMRpro Ambassador]

Use the search box at the top right and look for Actemra - the brand name. There are a lot of threads.

It makes it possible to reduce the high pred doses in GCA much more quickly but it isn't guaranteed that you will be able to get off pred altogether - it seems to work that well for about half. The trials are still ongoing - they still don't know how long any remission will last and some people still develop flares on it unless they are on at least some pred.

It costs about £12K per year and in the UK is approved for use in GCA only for up to a year. Beyond that it probably won't be allowed. When it works it can be brilliant - but it isn't perfect either. There are other similar drugs being studied as well.

I imagine you can insist on having it - but at your own cost...

[Lonsdalelass in reply to PMRpro]

Thank you once again PMRpro for your helpful advice. I am a bit bogged down with info at the moment, and don't know what to do for the best; dr is telling me one thing, friends another, family something else, and now this forum........my head is spinning! I am just trying to take each day as it comes until I am confident about what to do. Regarding your last comment, doesn't everything we are offered for PMR come with its own costs, nothing is risk free (unfortunately). Oh my.

[PMRpro Ambassador in reply to Lonsdalelass]

I meant financial cost outside the USA. They quote $40K per year if you have the infusions. I couldn't afford it...

[jeannette65]

I’ve been on toczilimab for 3.5 years for GCA I also have RA.Its been very good for me with no side effects. I have it as a monthly infusion. I still had high steroids now down to 2 mg and when Rheumy found out I had reached club zero he was not happy. I’ve been told I must stay on them. 😖

[PMRpro Ambassador in reply to jeannette65]

Why?

[jeannette65 in reply to PMRpro]

Because he thinks it’s still active and he wants to avoid any flairs.

[bunnymom in reply to jeannette65]

That's quite a change from what we usually hear Drs say.

[Lonsdalelass in reply to bunnymom]

Yes, quite!

[Lonsdalelass in reply to jeannette65]

Why? I see PMRpro has already asked that.

[HeronNS in reply to jeannette65]

I thought the whole point of Actemra was to allow patients to get off steroids, unless they still needed a small dose to deal with adrenal insufficiency? If your adrenals are up to snuff and you don't have any symptoms I don't know why you'd still have to take steroids.

[PMRpro Ambassador in reply to HeronNS]

Only about half of patients are able to get off pred entirely even with Actemra - the rest need a much lower dose but it is still possible to flare while on Actemra.