Tocilizumab

heatherbignold

Hello,

My husband has Adult Onset Still's Disease and takes methotrexate regularly together with steroids. He did try Embrel for a few months but as it was making little difference, he has come off that and the consultant is now trying for permission to use Tocilizumab, and we are just onterested to know if anyone else has tried this, and how they have got on,

Thanks,

Heather

bevman

Hi Heather,
My husband has RA he too has been on embrel and also rituxamab he has now been told he will prob be put on Tocilizumab and is waiting to see his rummy consultant in August but he was given information and a CD to look at he has since said that looking at the CD he may refuse this drug because of side effects.
His rummy nurse has said that it has had very good results for people who have failed on other drugs like this.
As it is quite a new drug and there are not very many people that have been on it i think you just have to trust your consultant i think my husband is very reluctant because he has been on so many diffrent drugs and is afraid ofwhat the side effects.

Alison

tillytop

Hello Heather

I'm sorry I can't help cos I haven't tried this drug, but there may be others on the forum who have.

Really hope funding is available for your husband and that it helps him.

Tilly xxx

dorcas

Hi Heather and nice to meet you

I've recently been started on Tocilizumab ...had my first infusion two weeks ago. So far so good! It's given as an infusion monthly.

I have PA an have already been on 3 anti -tnfs (Enbrel..I reacted to it; Humira..was effective for almost 5yrs before I produced antibodies which stopped it working; and Infliximab.. which did not work for me.

I count myself very lucky to have the opportunity of trying Tocilizumab. I have a rheummy consultant who was willing to apply for the funding and permission to let me have this drug..... which I understand isn't usually available for PA patients.

Like all powerful drugs there are potential side effects...and of course it's very much an individual decision whether or not to 'try' them.
For me the decision was an easy one... my PA has been out of control for many months now with increasing joint damage evident and surgery required. Anti inflams , Mtx etc have had no impact on controlling the PA so I 'volunteered' to be included on any clinical studies of the new biologics.

I do hope that your husband does have the opportunity to try Tocilizumab...and more importantly that it proves effective! From what I've been told as a Biologic it works in a completely different way from the anti tnf's, so hopefully it will help him...and me. :!:

best of luck!

Iris xx

skezier

Hi Heather,

Don't know much about it but wanted to just wish your husband luck and so hope it will help him. Nice to meet you. Cris x

Hey Iris got everything double crossed for you as well. xxx