Dr stop actemra . Still question is it gca ?

[Rajuguide]

My wife was diogonsis gca 6 month back , biopsy could not done . She was on steriod and actemra as per standard chart from 60 to down 15 mg with weekly actemra, no much improvements in headache, pressure , all test were perform mri .,every thing seems ok team of .rehumotologist, neurologist . And eye dr now feel this may not be gca even though symptom like gca , but still question than what it can be . dr has stop actemra but do not want to take risk of stoping steriod . My personal view , A big question ? We so many sufferers of gca are really on right track or taking steriod and actemra, which may not be require as in some cases it may not be gca or some other similar problem not traceable !!

The tregedy is gca is not 100 % easily digonosis And we follow long treatment ,as standard chart blandly on symptom as we donot have any other option in lack of no enough research in gca , these points come in my mind on watching my confused wife suffering from last 7 months and taking medicine and injection with no clear cut picture even though she is under treatment of team of drs. I scare she may not throw medicine in dust bin on any day .

[DorsetLady PMRGCAuk volunteer]

Whilst we appreciate your concern, we have answered all your questions in the past, and honestly I don't think we can offer any more advice. This is something you need to be discussing with your wife's doctors.. if the eye specialist doesn't think its GCA, then what else has been suggested?

[Sophiestree]

Hi Rajuguide. Has A PET CT scan ever been discussed? I know it's not the answer for everyone but it was how I was diagnosed.What is their plan now for your wife now they have stopped Actemra.

Did the high doses of steroids help her at the beginning?

[Rajuguide in reply to Sophiestree]

Thanks for your response , My wife ‘s pet ct scan , mri , head , neck scan , was done but nothing was helpful , now dr has advice, lumbar puncture fluid test , let us see what come out ,

Our discussion is surely , helpful to some one who is passing through same pattern of suffering thanks .

[Sophiestree]

Well it sounds like they are investigating everything, so hopefully you will get the diagnosis you have been waiting for all this time.

[Sharitone]

But please persuade her not to throw away her steroids! Whatever disease she has got, she will need to reduce them slowly! Good luck!