Hi all, my rhumy is putting me on Tocilizumab(?), I'm wondering has anyone anything to say about this drug and how they've been getting on with it, Thank you so much in advance!
Remind me - is it GCA or refractory PMR you have?
There is a lot of discussion about Actemra/tocilizumab on the HealthUnlocked PMRGCAuk forum.
Thanks Eileen, PMR and GCA since April and August 16, whenever I try to to get below 15mgs pred I've been flaring badly, so rhumy wants to try this. I know I've seen it mentioned here but can't figure out how to find it. Thanks again!
Hi. I been on actemra now for 8 months. I took my last dose of predsone two days ago. So far so good. Mj
MrsHobbles,
I have been on Actemra/Tocilizumab for 12 months and no problems yet. I also was diagnosed in August of 2016 and could not get below 24mg of Prednisone without a major Flare. I am now at 7mg of Prednisone and doing fine. Actemra is not a substitute for Prednisone but an adjunct to it or so I am told. I hope this helps.
Which flares? The GCA? I wouldn't have panicked about 15mg after less than 2 years for GCA but then I've probably come across far more GCA patients in 9 years than your rheumy!
Finding posts on this forum is easier using Google - the search engine on the forums is pants and you get about 50.000 links!
Or you go to the Homepage for this forum and scroll through all the past threads looking for a mention in the title.
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
That sounds very promising and hope everything stays equal for you bring of pred, you must be delighted. Thanks for your response😊
Thanks Eileen, GCA has flared about 5 times since December, each time rhumy would suggest going to 60mgs pred for 7 days and back to 15mgs, but after a couple of wks would flare again, 2 wks ago ended up in hosp overnight with vicious new type headache but my bloods were all up so they said it was another flare. Put me back up to 60mgs. Only saw rhumy on Friday and it was then he suggested the Tocilizumab/ Acetemra. To be honest I was glad he suggested something other than a quick reduction again, although i was just going to reduce very slowly but he wants me down to 30mgs by the time I see him in 6 wks, plus taking the Tocilizumab. I will just be so relieved to reduce pred, have horrible pressure on my eyes at the high doses, have lost at least half my head of hair, terrible weight redistribution, leg black and blue from a fall earlier in the week and now suspect I've a fractured ankle having gone over on it awkwardly this evening, A & E in the morning, couldn't be dealing with hours of waiting tonight!! Moan, moan, I'm feeling sorry for myself now!! Thanks again Eileen, your comments are always welcome and thanks also for links, did manage to read alot on the other forum xx
Thanks so much Charles, thats great you've been able to reduce so well while in Acetemra, and good to know that you've been on it successfully for 12 months, good to hear. Hope things keep going smoothly for you, thanks again!
They are probably creating those flares - it is obvious that 15mg is not enough to manage the inflammation so using 60mg for a few days is mopping up the inflammation - but the tap is still dripping and when you go back to 15mg it isn't enough to do the job. Had they told you to go back to 20mg it might have worked. There is a definition of madness: repeating the same action and expecting a different result!!!