Actemra

[Krezan]

I have GCA and am now on Actemra after a bad reaction to predizone is anyone on this?

[jinasc]

Are you on Actemra only?

What was your 'bad re-action to Prednisolone' please.

[Krezan in reply to jinasc]

I have 6 stomache ulcers and they aggravated them and the swelling was awful around my stomache . I am only on Actemra and i am having no symptoms

[jinasc in reply to Krezan]

Thank you and please keep us informed of your progress and I do so hope you that it continue to make progress.

[Devoid]

Hi I’ve been on it since November last year, now on 4.5 of pred. No problem with actemera, just self inject weekly

[Krezan in reply to Devoid]

I ony do it every other week, but I have no symptoms

[Devoid in reply to Krezan]

That’s great, I have recently stopped methotrexate and feel a whole lot better, it’s like everything else, what suits one doesn’t suit another. I had got to a point where I felt I was never going to be well again and 3 injections in I started to improve. This illness is so complex I’m not surprised it takes a lot to find the best treatment. I do hope you feel well .

[jinasc in reply to Devoid]

Hi

I asked Krezan the questions because this is the first time I have heard that someone was using Actemra only.

I was involved in the trials of TCZ, as it was then known, hence my interest.

[PMRpro Ambassador]

If you put Actemra or tocilizumab into the search HealthUnlocked box (at the top right of the screen for me) and limit your search to PMRGCAuk or My communities you will get a oad of previous posts about it

[Rugger]

I started Tocilizumab 14 weeks ago for GCA-LVV and feel better than I have done in the past 4 years (PMR diagnosed 4 years ago, with regular 'relapses'). I am tapering my pred at 1mg/month and might be off it altogether in 5 months. We are all different, but TCZ certainly seems to be dealing with my inflammation. I assume they will be monitoring you closely - especially your liver function, in view of your history?

Best wishes.

[Devoid in reply to Rugger]

Hi that’s made me feel so very lucky, I suffered for 8 months before I went on TCZ , I thought it was the worst 8 months of my life. To think of you going 4 years!!!!! Keep well

[Rugger in reply to Devoid]

Thanks for your sympathy! The PMR was controlled between flares! The GCA-LVV only appeared a year ago. It took a while to diagnose what was going on, but confirmed by a PET-CT scan and TCZ started 10 days before lockdown!

Take care and stay safe.

[Jim-CJ]

Hi Krezan

My wife has been on Actemra for over 1 1/2 years. It has allowed her to reduce Prednisone to 4 mgs with no GCA flares and no side affects. She is on weekly home injections.

The Best To You,

Jim & CJ