tocilzumab

lulubell69

Hi peeps
Had RA for 8 years and many drugs later rhummy has stopped humira as it is becoming less and less effective. He wants to start me on tocilzumab infusion. Anyone had this and was it successful.
Thanks
Les

lindalegs

Sorry Les can't answer your question but others may come along who can.

I do hope it's effective for you though.

Luv,

dreamdaisy

Hello lulubell69, I apologise that I cannot help either but I do know that someone on here was given tocilizumab and that it helped her. She hasn't been on for a while now, and I don't know if she is still receiving the drug, but I encourage you to try it as that is the only way you will find out whether it will be of benefit. I wish you well. DD

jodie1

Hi, yes I've been having tocilzumab on and off now for about 12 months and it has helped me, my RA feels more under control with than without. My only problem has been infection, I had an ankle joint replacement operation and as soon as I started back on tocilzumab I had infection in the scar site, which cleared up with antibiotics. This actually happed twice, but now the scar site is stronger everything seems ok.
Hope I've been of help.

skezier

Hi Les,

A friend of mine is on it and it has so helped her. i mean really helped her. I am not sure about side effects but I don't think there are too many..... one or two as with every drug but get them to run through it all with you so you understand it a bit better.

I always think these drugs are worth ago.... Its not an easy choice but it can really help where the others have failed as it works in a different way. Les forgive me I can't rememberer why it works differently but I do know it does and that's what helps to make it so good if you have failed on some of the others.

Hang in there and keep in touch with us and let us know how it goes. Cris x

astevo

Hi Les
I have just started on tocilizumab. Just had my second infusion. The results are encouraging for me. Search under roactemra and see discussion between myself and cornishman david

ste

kellis

I've been on tocilizumab for 2 months after failing with Humira.

I noticed a definite improvement just 2 days after my first infusion - the pain level reduced but the joint stiffness was still there. Just to reduce the pain levels was a joy after the previous 8-10 months of unrelenting pain!
Before my first infusion I was taking diclofenac twice a day to even cope with day to day life. Afterwards I was taking it once or twice a week just on the mornings where I felt the need. I still take Mtx.
Before my 2nd infusion (on 1st June) the pains increased again, but have subsided once more. I haven't noticed in improvement from cumulative effect after the 2nd dose, but maybe that will come.
I would say that it's not as effective as the Humira was (while it was working!) but it's certainly made life manageable again.
I haven't had any side effects to date, other than being a bit headachey on the evening after the infusion, but that may be caused from being stuck in a hospital room for several hours!

Good luck!

cornishman

Hi Les

I have just started on Tocilzumab (1st infusion 10 days ago ...so no benefit yet) I was on Enbrel before which worked really well with me for 4 yrs then stopped no no reason. I tried Humira...no result there! I was afraid of Rutiximab (mabthera) as the health warning and death rates frightened me...so my consultant advised Tocilzumab and reading the latest news and talking with him further I decided it was safer than others and works in a different way than Enbrel/Humira although its still an anti-tnf drug. I must be patient but I am confident and hopeful as my 1st infusion went well with no adverse side effects....apart from the third head I have recently noticed! Seems others on this forum are getting relief from it which is great!

I wish you well...I think this drug could suit and benefit people where other tnf's have stopped working for them....that's what my consultant preaches and I think he has a point.

All the best, David aka Cornishman