rituximab no more....tocilizmab here I come

My consultant called me last Friday for a catch up on how I was doing after my second load of rituximab which was beginning March.   We agreed that its not doing what it should and a change of treatment was required. 

Had appointment with specialist nurse yesterday and now waiting for slot on day ward to start first infusion of Tocilizmab - dont ask me to say it! 

If it can get me walking longer than 50mtrs and going upstairs with less effort than currently then I will be grateful.  What I really want is to get on my bike and cycle 20 miles or climb one of my fav mountains - dream on!

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  • Hi, I started tocilizumab a month ago, I am injecting it weekly rather than the infusion. My swelling has definitely reduced, and I am a little more mobile. I have a long way to go yet, having had a massive flare, but I am feeling more optimistic now. I do hope that is the one for you!! M xx

  • Hi would you mind telling me it it was easy for you to get the tocillizumab injections. The reason why I am asking is because my friend has been trying to get these injections where she lived? Thanks so much.

  • I was lucky....my hospital has just started using injections so I asked to have them....so much more convenient.

    I'm a great believer that if you don't ask, you don't get, so I would advise your friend to ask about it, and make it clear that it would be her preference. They can only say no...but I hope that they agree!! Wish her luck from me. Mavis xx

  • thanks so much Mavis. I will tell her. I have managed to avoid getting these infusions but I do understand why the injections are so much convenient.

    He he I feel the same way as you do if you don't ask you don't get in life.

  • Massive flares are the pits. Rabbie Burns the national bard of Scotland said " toothache is the hell o' all diseases" obviously he had not experienced a flare of RA or the throbbing pain of carpal tunnel which RA has kindly gifted me .

    Glad its working for you and hopefully it will continue to do so. We have hope and we need to cling on to it as one after one of the meds are tried and dont work...... been on Enbrel, Rituximab and now this one with the absurdly difficult to pronunce name!

    I was offered to inject at home but my gamy fingers which are numb at the tips have put paid to that in the meantime.

    First infusion 26th of May, would have been next week but friend has booked to take me to Highland hotel with spa treatments next week.

    Take care - I know its such a pointess saying as we have no option other than to take care - mind you I've always been a risktaker :) xx

  • Oh honey, I know how that feels. You look back and think this time 2 years ago I was standing loving the view from Snowdon! I'm starting Rituximab in June after other biologics have not worked. Scared, Depressed and getting fatter by the day with comfort eating....I don't know myself anymore. I hope your new drug helps, we just need a break! Warmest wishes.......

  • Yeah, sometimes it sucks bigtime, but we soldier on womanfully.

    Just had both wrists injected today to help the carpal tunnel another syumtom of RA :)

    RA - The gift that keeps on giving

  • Good luck with the new drug that cant be pronounced, i am awaiting progress/ decision after my 2nd rituximab early April. Niether dose have been effective and im still in my worst flare ever, i started this one in sept 2015.

    It is funny how these drugs suit different people , i miss my embrel that had been fantatsic for years but gradually decreased effect, i believe though it was still about double effectiveness if rituximab so far. Also facing ill health retirement as been off long time and failed phased return over 10 weeks.

    Let us know how you get on and good luck

    M

  • Hi M,

    I totally understand where you are with your worst flare, its absolutely the worst thing I ever experienced in my life and last year was one after the otherr after the other with hospitalization and IV steroids giving short periods of relief. have only had it for 2 years but boy its got its running shoes on!

    I received my second infusion of Rituximab on 9th March, I first started the infusions last Sept/October.

    I was in such a major flare for the first few mths of this year that my RA consultant gave me 3 IV infusions immediately after the Rituximab on 9th March to help me get back on my feet.

    When I spoke to my consultant just over 2 weeks ago - early May, I was not seeing the improvement we had both hoped for and that is when we made the decision to switch to tocilizumab - which I have since learned to pronounce :) date of my first infusion is 26th May.

    However, for the past few 5 days my overall mobility has improved and so has my sense of well-being....could it be the Rituximab has started to work? I definately feel much much better, can walk without the aid of my stick, get out a chair with ease and have virtually no pain. ***UNBELIEVABLE*** or what. Managed into my office twice this week!

    Called specialist nurse yesterday and we have agreed to wait until Monday

    ( 4 days before tocilizumab infusion ) and if I still feel as good we will push the treatment out further to make sure I continue to maintain/sustain how I feel.

    So, sont give up hope with Rituximab, it might just work for you, I really hope it does as life without some sort of relief from this terrible disease is so tough.

    Look forward ti your updates

    chez x

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