Starting new treatment : Am having to come off Benepali... - NRAS

NRAS

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Starting new treatment

Swimming20
Swimming20

Am having to come off Benepali as it's not working for me ..am going on Tocilizumab is anyone on it or know anything about it xx

14 Replies
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Hiya

Exactly the same was on Benepali did very little , now on Tocilizimubab weekly injections it’s been amazing ( touching wood ) !

Literally was in a bad way before xmas , off work for 2 months , couldn’t drive , walk well etc started Toci and I’m back to me ! Crazy busy Mum , driving , walking my dog 2 miles a day ! Toci is a wonder drug , really hope it does for you what it’s done for me .

Good luck and keep me updated .

Claire x

Swimming20
Swimming20 in reply to claireyj

Thanks Claire I will you have boosted my confident xx

Fantastic treatment, changed my life . Literally I couldnt walk and now I can. No side effects either. Good luck with it.

Swimming20
Swimming20 in reply to allanah

That's amazing ..thanks xx

I don't know anything about it but good luck. x

Truly life changing for me. My 5th biological therapy, the others - cimzia, simponi, rituximab and orencia didn't work anywhere near as well (or not at all). Good luck

That's sounds great ..🤞hope it's the same for me xx

Hello there, yes toci did it for me for years but I had 4 weekly infusions and as I say I did really well for many years. I am now on mtx and Baricitinib and doing ok I hope you do well on it too.

Ah great..just once some relief...thanks x

I'm on monthly toc infusions and have found it to be totally life changing. Barely any side effects, and I'd rather have the inconvenience of being at hospital once a month with a guaranteed month of good joints, than doing home injections with a further chance of being allergic to whatever preservative is used in self inject pens

That is very interesting thanks xx

Can I ask how long you were on Benepali as I have been on it 10 weeks and don’t think it is working for me. Hands are really swollen and painful

Have been on for 9 weeks l was getting worse..was getting no relief at all even with pain killers ..losing the will live ..phone your department and tell them good luck ..let me know how you get on xx

Knit12
Knit12 in reply to Swimming20

Saw my rheumatologist and she agreed Benepali not working. Got steroid injection in my hand. Going to be put on weekly injection of Tocilizumab so I’m joining you x

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