Here we go again!

[broomfield28]

GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has anyone been here? Feel ok but a bit disheartened. Also now referred to breast clinic and gynae due to scan results!

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that, what symptoms in particular re showing “inflammation showing in all usual places” and how high is CRP?40mg is high dose, is every sure it’s GCA, and not just PMR, where a lower dose might have sufficed?

Good luck with gynae and breast clinic…you have a lot on your plate at moment….

..and please keep us updated.

[broomfield28 in reply to DorsetLady]

CRP 22 Scan shows vasculitis in head, neck, shoulders and aorta. Do you know anything about Azathioptine? That’s next apparently. Thanks for your concern.

[DorsetLady PMRGCAuk volunteer in reply to broomfield28]

Azathioptine? No sorry no experience nor knowledge.

Scan….sounds as if could be Cranial GCA and/or extra cranial GCA (Large Vessel Vasculitus).

Please let us know how things go…..😊

[Theziggy in reply to broomfield28]

I was put on Azathioptine but it didn't agree with me, it caused breathing difficulties. But maybe that was just me!

[PMRpro Ambassador]

I've had PMR for 18 years, pred for 13+.,TCZ for 6 months and have got from 19 to 8mg. Luckily I don't live in the UK - TCZ wouldn't be an option there. I thought I was dying on methotrexate. I offered to try leflunomide but heaved a sigh of relief when it was rejected by my rheumy.

That is a bit rough - was the inflammation PMR-style or GCA? And all the best for the other bits - keep us in the loop.

[broomfield28 in reply to PMRpro]

Vasculitis in head, neck, shoulders and aorta. Talk of trying Azathioprine next. Thank you for your concern.

[PMRpro Ambassador in reply to broomfield28]

You were on tocilizumab - did that work while you were on it?

[broomfield28 in reply to PMRpro]

Yes but not allowed any more!

[PMRpro Ambassador in reply to broomfield28]

I find this one year limitation for "GCA" patients most peculiar. I cannot see where the difference lies between a patient of 49 with Takayasu's arteritis and a patient of over 50 with similar large vessel arteritis. We even had one lady on the forum who noticed her diagnosis had been changed in the notes from Takayasu's to GCA. When she asked she was told that it was because it was called GCA in over 50s!!! I mean - REALLY? Changing the name doesn't change the effect the disease has on your body.

My own rheumy was saying yesterday how grateful he is that here he is able to use Lodotra (delayed release prednisone) and tocilizumab when required - he couldn't use them when he worked in Austria.

[nuigini in reply to PMRpro]

So pleased to hear of the drop to 8 mg!! You've made it below 10! I'm so envious.

[Sharitone]

Sorry for your disappointment. Is there any chance that after a certain period off TCZ, you get another shot at it? I don't get the logic in withdrawing a drug that is working for you. I know it is expensive, but then, so is total hip/knee replacement, and nobody suggests people should be rationed to one joint, so they? I have a TA diagnosis, so am allowed to have TCZ for longer, and in your position, I think I would be starting a campaign.