Ro actemera to Tyenne

[Devoid]

Hi I’ve done my first Tyenne tocilizumab today . Has anyone else on here been changed over to this??

[Jamiesons]

Hi,

I started on a tempera (April only 4 weeks) then on Tyenne have been taking for 3 months,

I would love to know how others are finding taking this too, I take every Friday as I find this gives me a boost for most weekends, not always reliable, not sure yet if that’s due to me over doing things when I’m feeling good, I was taking 25mg methotrexate Mondays which gives me fatigue,

I received a call after bloods test regarding raised liver enzymes, told to reduce to 20mg, same call for next blood test, I’ve now reduced to 15mg and still getting calls for my nurse, I see my rheumatology consultant 3rd September so waiting to see what she says.

I would love to be able to drop methotrexate altogether but TCZ is only for 12 months not sure if that will be possible.

In general I’m finding TZC has made a positive difference in my movement and muscle aches,

[Devoid in reply to Jamiesons]

Hi I didn’t do well at all on methotrexate or lefludomide . Have felt much better since just on Toc . I had a short break but vasculitis was present on scan and I was unwell again. So had a course of steroids and Toc reintroduced. Now been on Toc only for quite some time, recently changed to every 9 days. My consultant is of the opinion that he can’t keep me well on anything else so has continued to prescribe it .

[Devoid in reply to Jamiesons]

Hi I’ve just read your bio and other than my initial diagnosis was GCA and then it was found to be large vessel vasculitis our story is very similar. I know some manage very well on methotrexate but I can honestly say it felt like it was poisoning my system. The fatigue was horrendous and my mobility just got worse as the weeks passed,.It was only when I stopped it and was just on Toc that I started to recover. Now 5 years on from diagnosis I feel well and able to do pretty much what I want to enjoy life . I do hope you get the right treatment for you to improve.