GCA flare

I have GCA and polyreumalgia for the last 6 years on 7mg of Pred a day was down to 4mg but had flare and had to go up to 8mg. Went to my rheumatologist 2 weeks ago and had a scan of my arteries in my head it came up with halos on both temporal arteries have tried methotrexate and leflouamide but both didn't suit had to have a special blood test to see if I can tolerate aziathropane ( spelling probably wrong) has anyone been on this and what was the result?

Many thanks

Val

8 Replies

oldestnewest
  • Val, what a bummer to have this flare, especially after 6 years on Pred. I haven't had any personal experience with Azathioprine but I do know someone who took it for a while a few years ago, and it did help in getting the high steroid dose down to lower levels. If Azathioprine doesn't work for you then perhaps your rheumatologist could get special permission to try Tocilizumab - at the moment it's licenced for patients with rheumatoid arthritis but not for GCA, although I believe it came out well in the large trial into its efficacy in GCA. Meanwhile, good luck on the Azathioprine if you are found suitable for it. Hopefully, someone who has actually been on Azathioprine will see your post and reply with their experience.

  • It does seem to being used in the UK by certain rheumatologists judging by a post where someone said she was either on it or was to be put on it. And I THINK that it is Dasgupta she was under.

  • Yes, I've noticed that some rheumies seem to be prescribing it in GCA. Wonder how they get around it?!

  • I know in the US and Aus there are rheumies who reclassified the diagnosis to be RA, patient got no help from methotrexate so was therefore qualified for a trial with tcz. But I don't know how Dasgupta has got round it as I'm sure he has used it (might be wrong, don't quote me!). Are they extending the trial for long term results?

  • Extending the trial for long term results would be very valuable but I haven't heard any mention of that yet.

  • The people in it will be followed for some time but I couldn't imagine new additions...

  • I believe someone in Southern California was taking Actemra aka toxcilizumab. Iirc, she had a 13 month course and was able to get off Pred. But recently flared after family tragedy and is facing another round of treatment.

  • I am under professor Luqmani at Oxford

You may also like...