Need help, I am very confused

[Ihsandaakur]

I was diagnosed as GCA 5 months ago and was put on 80 mg prednisone. Then prednisone didn't work well for me and they put me on azathioprine 200 mg and methotrexate injections. Also they didn't work for me and still have severe temple and eye pain in addition to jaw and ear pain). During those 5 months i lost my left vision several times and was put on IV steroids. Also lost my left hearing and took direct dexamethasone injections in my left inner ear. Now my doctor says he wants to give me Remicade infusion. Is that a treatment of GCA ? Isn't Actemra better for me ?

[jinasc]

You need to see if your Consultant can get you onto: Tocilizumab. It is approved for use in RA and we are awaiting approval for GCA, which is likely to take some time. It is expensive and I mean expensive.

A good haemeotologist (spelling) sorted a lady out long before Tocilizumab went through the clinical trial process and it turned out it was some sort of problem which they were able to deal with and pred worked.

[PMRpro Ambassador]

I have never heard of Remicade being used in GCA - in fact, I believe that anti-TNFalpha medications (the type of drug Remicade is) have been identified as of no use, potentially with risks. That is certainly the case in PMR and GCA is closely related.

If your rheumy will not consider Actemra/tocilizumab I think perhaps a different rheumy is called for!

[Ihsandaakur in reply to PMRpro]

I saw a different rheumatologist yesterday and he refused remicade and put me on Actemra. Fingers crossed 🙏

[PMRpro Ambassador in reply to Ihsandaakur]

Sounds better! Good luck

[Blanksia]

Ihsandaakur - I really feel for you. It must be frightening. Has low-dose, daily aspirin also been tried - to aid circulation?