Is anyone else on Rutiximab, and if so, what do you t... - NRAS

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Is anyone else on Rutiximab, and if so, what do you think of it?

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Hi, I'm into my second full cycle and have found no difference so they are looking into putting me on something else. We are all different and all at different stages of RA so as we know what works for one doesn't necessarily work for another. That's why they still keep trying to find alternatives. Saying that, if you are considering having the infusions, I didn't find them any problem actually having them. I did get a migraine during the first night of both cycles but not on the second night of either cycle. (Hope that makes sense).

After the first cycle the inflammation markers in my blood test were lowered so I went ahead with a second cycle to see if I was a slow responder. Obviously it was doing something for me, just not enough.

All that being said, the lady in the seat next to me when we were having the infusions found them marvelous. She has had RA for years longer than me and had a far better response with no side effects which goes to show how different we are.

I have no doubts that you will get more positive answers from others on here who it has been great for, I do hope it works for you. I was undecided whether to post this reply but then thought that we are here to help each other, good or bad.

Regards, Judi

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Thanks so much for your reply Judi, I am really glad you were honest with me. I have had. Y first 2 infusions of Rituximab, it made a difference, but not as much as I had hoped, still had to go back and get steroid injection. The part when you spoke about inflammation markers, I'm not sure what you meant there, I got the infusions but no tests to see if it had worked. I'm back in for a pain score in September and they will decide then if I can have my next 2 infusions earlier than December. Going to Spain with my friend on holiday, want to get a steroid injection to help with the pain when I'm away, but don't want it to mask the pain and I fluency the next doses of rutiximab.

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Hi juju, I completed my first course of rituximab back in june and i must admit i am very disappointed with it. I feel a little better but i had to go this week to get an injection into my knee and i am still on 25mg mtx plus other disease modifying drugs, i had been on enbrel before that with no success, i think i may just be unlucky. I have been told that they may try tocilixumab next but will have to wait and see. It is just unfortunate that they can't match us with the drug most suitable, perhaps one day. Good luck. millie

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Hi Juju

Not sure when you had the course of Rituximab but it usually takes about 3 months to start working. I have had 3 courses all in all, the last being April 2011. I still take MTX but have not had any more Rituximab because although I am a bit stiff here and there I take no pain killers and lead a relatively normal life. For me it worked really well - here's hoping that it will soon kick in for you.

Wendy x

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Thanks ladies, I had my Rituximab in may. But really thought it would of been better than this, there was a bit of an improvement, but I'm getting worse again. Getting me down a bit I must admit and now having trouble sleeping.

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Just a thought Juju, are you taking MTX as well as the Rituximab? As far as I am aware it is recommended to be taking the 2 in conjunction. x

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Yeah I'm on methotrexate too, but scared off it, cos last year had to come off of it cos my liver function wasn't right!

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Hi Juju, have you had any blood tests since having the rituximab infusions? They show whether there is less inflammation than there was before the infusions. I only know that mine had gone down because I asked my rheumy nurse when I saw her in between the 2 cycles of rituximab.

I have heard that rituximab may take a while to work for some people, sometimes even into the second cycle so don't give up hope. Meanwhile are you taking any pain killers? (Tramadol or something codeine based? Speak to your GP / rheumy team for suggestions).

Like Millie they are considering trying me on tocilizumab next. Unfortunately trying is the word - the biologicals all act differently and all of us are different.

Speak to your rheumy team, my 2nd cycle was after 8 months but should have been after 6 months, just got forgotten I think.

Judi

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Hi there Judi, no I haven't had any blood tests taken since having the Rituximab. I have heard other people in different parts of the country getting blood tests. Im in aberdeen. I am on cocodamol for pain relief. It takes the edge off things. Is the Tolicolizumab the one that can't be given if you have MS in your immediate family? My dad suffers from MS. Hopefully getting my next lot of Rutiximab early October instead of late November. Fingers crossed.

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