John Mills on behalf of VUK are interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad)
NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation.
Please contact John.mills@vasculitis.org.uk
I have been on tocilzumab for gca for 20 months now. I also have RA. It has been fantastic for me with no side effects. I was previously on retuximab but had some side effects with that, swelling of the face after infusion. I am on several studies for my hospital.
I was given 22 doses of tcz it did slowed takayasu arteritis but when my CRP started rising again my docs decided to put me on tacrolimus. Since then its been one year and my disease is in control now.
I have had 21 infusions of tcz and all is well so far.I feel well on this drug did you? I've had no side effects either. I'm down to 31/2 4 mg of pred are you still on pred? You're the only person I know who's on tcz. Hope all continues well for you👍😛
Tcz is probably the safest of all biologucst
Tcz is probably safest of all biologics. My exper
Sorry for broken txts . coming back to topic I never faced any side effects of any type during entire duration I was on tcz. Best results can be expected when it is used in combination with mycophenolate moefotil. I was put on this combination but mmf was quickly withdrawn because of allergic reactions. Coming to prednisolone doses currently I am on 7.5 mg pred once a day. With 1 mg tacrolimus. Tcz was stopped last year. Tacrolimus has provided me with better results in comparison to tcz. And it is first time in 4 years of my illness that my docs have managed to bring my steroid doses that low. And belive me my pet scan is also as good as a healthy person after starting tacrolimus.
Please can you write to John and just say what you have said above please. John.mills@vasculitis.org.uk
Thank you
Temporal arteritis
Giant cell vasculitis and Takayasu Arteritis 
Temporal arteritis
