Tocilizumab

[mille]

Hi, Are any of you on the biologic called tocilizumab, i expect to be starting it soon and would love to hear from anyone that is on it and how they feel on it. Hope everyone is doing ok.

[watson3]

insorry dependent.co.uk/life-style/health-and-families/health-news/tocilizumab-gives-new-hope-for-arthritis-patients-7830651.html

Not on this drug but looks like it is having very good results according to the research. Hope someone is able to give you some comments.

Best wishes

Carole

[Judi]

I'm waiting to be put on the same one.

Judi xxxx

[2169]

I'm sorry to give you the bad news but I've got to be honest, I was on it for 3 months and I'm afraid it didn't do anything for my pain, I had to go back to Enbrel as the pain was better controlled on that, but the good news is my rheumy said it brought my inflamation right down, which confused me as I thought that was what caused the pain, but he said it's well known to bring down inflamation but doesn't always make the patient feel better, but everyone's different and it may work brilliantly for you, I hope it does. all the best.

[mille]

Thanks Watson, i hope it does help. I have already tried enbrel lydia and it didn't do a thing for me, in fact i was worse so i do hope this works as this will be my 3rd biologic.

Perhaps you could let me know how you get on Judi if you start it before me, i think it will be a couple of months yet before i go on it. xx

[Judi in reply to mille]

Hi Mille, I don't see my rheumy nurse to talk about going on it until beginning of December so I'm guessing, IF I go on it it wont be until late Dec/early Jan. I'm on amlodopine for BP and it is mentioned on the leaflet that it's a no go while on amlodopine - I dont know if the rheumies realise this which is why I say 'IF I go on it' I could 'phone them and point it out but as I am having steroid injections every 6 weeks and they are working (fingers crossed and touch wood that carries on) I dont feel too rushed about it.

Judi xxx

[Wolf52]

I was on it for about 8 months before having to give it up this summer due to problems with my bowel - if you have bowel problems beware as the toc can perforate your bowel. Whilst on the toc, except for weight gain not much was happening. The one thing it will do is drop your ESR and CRP numbers and the rheumy will think all is well, but then looks at your joints etc and finds that it isn't. Having said that, there was a lady who had her toc and after three months was no longer walking with an aid. You win some you lose some - me I lose most.

Best of luck, Nina x

[mille]

Sorry to hear that you had problems with it Nina, It is a worry when they can cause that type of problem. Did you have a problem with your bowel before you started it? What are you taking now if you don't mind me asking. x

[mille]

Nina, did you put a lot of weight on while on it? thanks again x

[Wolf52]

I used to have IBS many years ago which was more stress related. But have been to see my gastroenterologist today and have to have colonoscopy to rule out any other problems - it may well not be the toc causing my issues but we will find out! Am only on steroids and painkillers and not doing well at all to be honest. Seeing my rheumatologist next week so will know what's next then.

Yes I did put some weight on, have managed to drop 18lbs since I came off without dieting.

Nx

[mille]

Thanks for answering Nina, I am sorry to hear that you are not doing so good. I hope everything is clear with the colonoscopy, it's always best to get checked out. I hope when you see the rheumatologist next week they can give you something to help.

I've not been doing to well either, i was at the hospital last week and got a steroid injection which has really helped this time but i am dreading it wearing off.

Take care and hope you feel better soon x

[creakybones]

After being on all the drugs known to mankind for ma Ra ive had two infusions of Tocilizumab and have been on the home injections. After second of my injections, it was like a wonder drug. My ankles and legs were tiny in the first time in ten years. So I'd say go for it and see if it works for you. Good luck irenemck