Tocilizumab

[BlueMozart]

Hi. Has anyone had Tocilizumab injections for pmr? I've been looking at recent research which seems to suggest favourable outcomes for pmr sufferers who have problems tapering prednisolone.

[DorsetLady PMRGCAuk volunteer]

Not authorised for PMR in the UK - if that’s where you live, and guessing you do as you refer to Prednisolone rather than prednisone which is used in other countries.

[PMRpro Ambassador]

I am but I don't live in the UK. Even so, after a year I have only managed to get from just under 20mg to just scraping 7mg - any lower and I'm really struggling. I have been on pred for nearly 14 years and had PMR symptoms for 18+ years which is why my rheumy decided to try it.

But it isn't approved for "just" PMR anywhere in the world although a couple of clinical trials have looked promising. My rheumy, who was involved in one of the trials, says it is unlikely that the drug company will do the necessary sized trials for PMR since it is out of patent and they are unlikely to recoup the costs of the trials since biosimilars will be appearing on the market soon.

[BlueMozart in reply to PMRpro]

Thank you, that's useful to know. Are you saying that there will be other drugs that have the same effect available in the UK soon?

[PMRpro Ambassador in reply to BlueMozart]

I don't know about soon - new drugs will still be expensive to recoup the costs of development and licensing. However, Humira, used for RA, was a similar price to Actemra, IRO £15K per year, at first, it is now about 800 euros a year. If Actemra was that cheap. I'd pay for it myself! It isn't yet though.

[Sophiestree in reply to PMRpro]

I know you have posted this before PMRpro re getting to 7/8 but not lower. Can I ask how long you give it before you attribute it to the lower dose. I found 8 (after Actemra being taken away from me when I had got to 3.5) to be the best place, but know I am expected to get to way way lower than that, hence I keep cancelling my Rheumy appts after them telling me I am clear after the PET CT. Am not enjoying being on 7.5/7 at all

[PMRpro Ambassador in reply to Sophiestree]

It hasn't really been a return of PMR - though thinking about it, the attempt at 6mg was accompanied by almost painful stiffness but more fatigue and inability to function. Which isn't an option when you live entirely alone!

[Miacaro45]

I was on it for 2 months and had so many side effects that I had to get off of it.

[Plains]

I have been on it for 8 months and was able to reduce my prednisone to 11/2 mg a day. I hope to reach zero prednisone someday but time will tell. I am very afraid to come off the Actemra injections for fear of the pain coming back

[Chrisellie]

I was on Tocilizumab weekly injections for 12 months.

Tapered off steroids to 0 during the first 9months.

I had GCA,LVV&PMR. At the end of the 12 months it was stopped(no tapering).

All 3 illnesses were gone and have not returned in almost 4 years and 5 months. Lucky or what. ☘️( couldn’t find a Heather imoji)

[scottygirl73]

Yes i was injecting during pandemic,i didn't feel it helping as much as the Infusion.I mentioned to my rheumy anxd he said a few people felt the same,back on infusion and off pred for over a year now.xc

[Rozzyt]

Hi I am now on 5mgs for 8 weeks, so far it's bearable. I also take homeopathy which reduces any anxiety but mostly felt good from illimanating inflammatory foods. Now gluten free, no alcohol or fizzy drinks. Caffeine free small amount of tea and coffee. Chamomile tea and green tea. Sleeping better already too. So far lost a bit of steriod weight. Best road i have gone down. I didn't know there were injections. Life changing diet to get off steriods which are doin more damage elsewhere but pain free @ 15mgs and now just feeling a wee bit of pain from 8mgs and reducing. I will get off these steriods as soon as its possible.