Not on steroids

[evafel]

Hi are there anyone in here who's not on steroids? I can't take it, had to many side effects. Tried a lot of drugs and are now on Humira and Methotrexate. Had pmr for 4 years and gca for a year. My gca are in all big blood vessels. I am 59 years and live in Sweden.

[PMRpro Ambassador]

Is the Humira and methotrexate working? It isn't one of the monoclonal antibodies I've come across being used in PMR/GCA. Tocilizumab does seem promising but the proper clinical trial is still under way.

I don't know of anyone not on pred at all - some are on mixes of medications. But if there is I'm sure they'll appear.

[evafel in reply to PMRpro]

I was on Tocilizumab for 6 months but my inflammation in the blood vessels increased, seen on a pet-scan. All tests look find when you are on Tocilizumab , it hide it. And I got very hard side effects while using Tocilizumab , so much pain in chest muscle and back muscle I could hardly breath. But I think it will help many others. I am a member in a facebook group in Sweden where I live and all members are on preds. I thought I

ask here in a bigger group.

[PMRpro Ambassador in reply to evafel]

Pred is the substance they KNOW works and for ethical reasons must be used when you are trying to find another answer. It is also cheap - so there isn't that much incentive for them to use the very expensive drugs instead.

I do hope it works for you - and what you say about tocilizumab is very interesting. They were very excited about leflunomide, another RA drug, but it hasn't turned out to be as good as they hoped either. Do keep in touch and tell us how you get on.

[evafel]

I will, thank you!

[Celtic PMRGCAuk volunteer]

Apparently the trial on Toxilizumab on 250 patients with GCA has ended and results are awaited. During a presentation at a recent conference we heard that no-one had dropped out of the trial due to adverse effects, so it is very interesting to hear your experience, evafel. I do hope the Humira and Methotrexate proves successful for you.