Gca and tcz

[bunky52]

Has anyone out there been on actemra tcz for gca. Recommended by rheum so I can get off prednisone

[PMRpro Ambassador]

If you follow this link:

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

at the bottom of the page that comes up you will see there is an article about the tocilizumab trial which is currently running all over the world, including in the UK. It is in language aimed at the patient. It is the outline of the trial - there are no long term results available yet as far as I know so a doctor telling you it will "get you off pred sooner" is stretching it a bit I think. There may already be anecdotal evidence for short term benefit but not long term, it hasn't been going long enough. However, there is obviously enough background to suggest it might be beneficial or there wouldn't be the trial.

Where are you bunky? Other than the trial I would be surprised if it were financed in the UK for GCA but of course they might.

[evafel]

I had it for 6 months, got side effects muscle pain in chest and back snd my gca increased so I had to give it up

[30048]

yes......the jury is still out..... however, I am giving it a try. i am due for my fourth infusion this month. the doctor that I am seeing is conducting a trial and feels very positive about its success ratio. I am into my third year on prednisone and had to try something. I will let you know. So far it has improved my blood results and I do feel much better.

[30048]

It is me again. I have really gotten a lot out of this site. I am thankful for all the suggestions and information. Someone referring to actrema as poison got me to thinking. ( I am currently taking it $. I , of course, had the same reservations but I have discovered in my 78 years that not everything is clear cut. In life and sometimes you have to weigh all the options and decide if the plus outweighs the minus. We seem to be in territory that is not well mined by the medical profession and we are left doing what we think Might work.and that sometimes leads to taking poison. My daughter would say "better living Thru chemistry ". I hated to think that people would be dissuaded from taking it if they had the opportunity.