New treatment plan GCA

[Bessyg]

Hi!

I met with my rheumy yesterday and now seven months into my treatment for GCA. Initially I was told that I would be on Actemra for one year with Prednisone and then Methotrexate. Yesterday, I was informed that there will be no Methotrexate and from month ten, I move to fortnightly Actemra injections to extend it out.

I am curious to know if anyone has tried this method?

Bessyg

[PMRpro Ambassador]

I'm on Actemra to reduce my pred dose as for various reasons I was stuck in the upper teens after about 13 years on pred. I was able to taper to 6mg over about a year without any PMR problems. I struggle at 6mg for adrenal insufficiency issues and was far happier at 7mg, I have severe back pain - and it is improved with 10mg pred but that is something I shall have to discuss with my rheumy in the New Year.

I'm in Italy with no time limitation on the Actemra, but in the UK it is 52 weeks rather than 52 injections so if you want to do what you are to do you have to stockpile your Actemra! A year will get you to a lot lower pred - but once you stop the Actemra the PMR may well come back. The Actemra is a very expensive steroid sparer - it is not a cure, it has no effect on the actual disease process and it may well not have gone into remission by then.

[Bessyg in reply to PMRpro]

Hi PMRpro,

Thank you for your reply!

I am in Australia.

We can get the Actemra but it costs $810 a pack of four.

During the 52 weeks, it is available under our PBS scheme for free.

I am still getting aches now but have just reduced my prednisone to 4 mg from 5mg yesterday.

Cheers

Bessyg

[PMRpro Ambassador in reply to Bessyg]

There seems to be a slightly daft situation in the UK whereby you can't pay for Actemra yourself. Seems a bit silly ...