hello all. Well I have been passed as fit to get this months infusion of Tocilizamub. I wasn't able to get one last month due to a low white cell count. Anyhow the question I have is.....has anyone put on a lot of weight with this drug? When I was getting my first the nurse who was inserting my drip happened to say that some people had complained about the weight they had put on will in the drug. Now listen everyone.....before I started biologicals I was a size 10/12, I have been on Tocilizamub since December and now I am struggling to get into a14! I can hear you all saying (bet she's fond of a marathon bar every night after her tea), well the truth is I am vegaterian and I eat very healthy. Now i would be telling you a lie if I said I didn't enjoy a good mouthful of chocolate..... Believe me I do but only once a week or so and never on a daily basis.

Does anyone else know of this happening while on Tocilizamub. Now having said all of that, if I was taken off it tomorrow I wouldn't care as it is not helping me very much. In fact I don't think it is helping me at all because I have started to lose any strength I had left inmyright hand. I can feel my thumb twisting u der my skin. The RA is progressing while on a biological, that can't be right.......maybe I'm expecting too much. Am I?

5 Replies

  • I amk not on that anti tnf so can't help with weight gain whilst on it. I am on Enbrel which I inject every week. The nature of RA means restricted mobility which means less exercise which means you put weight on. I've also gone up in size since having RA - I was a size 12 when it was first diagnosed 5 years ago - nowhere near that now!

    If you feel Tocilizamib is not helping you, I suggest you speak to your consultant. These things don't suit everyone but are normally designed to keep the RA under control and prevent further damage to joints etc. rather than making the RA progress.

    Hope you get an answer but speak to your Rheumy Team as soon as you can. No point being on a drug which doesn't do it for you.

    LavendarLady x

  • Thanks Lady, yes you have a point there about the inactivity, that could be a factor. I do try to be as active as possible but like everyone else with Rheumatoid Disease it is mostly very limited especially if your legs are bad.

    I have been thinking after I read your very welcome reply, maybe I am looking for these drugs to take me back to the place I was in before this disease was diagnosed. How many have been restored to health again? Is my life just going to be a series of trying yet another drug?

    There is a woman on the site this morning who has RD for 19 years and throughout that she has more or less suffered pain. Can we ever expect to be pain free ever again? Is that what the future hold for us? I have only been diagnosed for 3 years. I had great responses to some of them but it never lasted more than a few weeks before I had to be taken off them dude to side effects. Is it unrealistic of me to think that someday I may be pain free?

    Sorry, I really have go carried away here. I think I will put this question to t he main site to see what comes out of it.

    I do appreciate your listening to me sounding off on a subject that has nothing to do with my original question. That's what great about this site, there is always someone to listen to you when you start raving like a lunatic. XX

  • i have put on weight too, but due to steroids, horrible having tight clothes. x

  • Oh I know what you mean. I seem to be putting on a kilo a month according to my weight chart at the hospital. I had an infusion this afternoon and there it was, another kilo!!!

    I have an appointment with my team on Tuesday and I'm hoping to be taken off Tocilizamub as it really isn't working. So I,ll cross my ankles as I can't cross my fingers any ore that they will put me on so ethi g else. All the best and thanks for the reply. X

  • Hi jeanabelle, if it is any help I am on weight watchers (online) and have lost half a stone in two weeks. I am using their pro points but don't use 26 points daily as I can't lose weight on that. Have cut it down to 22 points and it's working with lots of fruit and veg as well which are all free. Might help, Lavendar

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