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Rank: Advanced Member  Groups: Registered
Joined: 1/19/2011 Posts: 32 Location: south yorkshire
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Good afternoon everyone,
Was just reading the post where poor Jackie was having probes with rituximab, is there anyone having good results With this drug, I am due to have my assessment to start it. Obviously I am very concerned I do not have a lot of confidence in my rheumatolgy team since being given cimzia, and should never have been prescribed it, so would be very grateful if anyone can tell me anything about rituximab at all, they have also increased my methotrexate to 25mg ler week along with keeping me on sulphasalazine too. It's no wonder we don't all rattle, maybe we should all get together and form a band? Rheuma and the toids sounds cool don't you think,
Had my knee replacement checked as well which was done in march, and if it's not settled he may have to redo! Gonna check in November, if it's better he's doing my other knee.
Take care
Joe xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Joe I ll join the band ! brilliant on the tambourine you know  I m afraid I have no knowledge really of ritiximab, although I have read it doesn t work so well if you don t have the rheumatoid factor. I d be interested to know what problems you had with Cimzia as I have just recently started if after failing on infliximab, its not good to hear you don t have a lot of faith in your rheumy team, have you considered changing your consultant ? Hope all goes well for you, keep us posted. Julia x
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Rank: Advanced Member Groups: Registered
Joined: 1/19/2011 Posts: 32 Location: south yorkshire
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Hi Julia
I have a benign tumor around my optic nerve and cimzia is not for people who have or had tumors. That was the only reason, I had a new consultant and when I said I was concerned because I was getting headaches and had this tumour he couldn't believe I had been prescribed it, he even sent me a copy letter to my gp that stated this. I hope it works for you thou, I didn't have any other side effects with cimzia thou. I just feel like a guinea pig, a couple of weeks ago they said I now have fibromyalgia, makes you wonder where it will end.
Take care
Joe xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Joe Thanks for letting me know about the CImzia, much appreciated and really pleased to know you had a consultant who was on the ball ! pretty essential really ! Goodness me, certainly understand your thoughts about being dx with fibro too, we never know what is round the corner with it all. I m sure you ll get lots of advice about rtx. give the helpline a ring too they are marvellous we have a great support network here  Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Joe
I dont have any experience of Rituximab, but like Julia I have recently failed on infliximab and have to wait to get it out of my system before starting something else. Like you I have also just been diagnosed with fibromyalgia the two seem to go together...Good luck with the Rituximab and I'll be interested to see how you get on xx
Julia, Hows the Cimzia going?? xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Ceri How you doing too ? have you seen the consultant about the next anti-tnf ?, would mention my consultant made no mention of getting the infliximab out of my system before moving onto Cimzia. Well I am definitely the best I have been since this all began thanks, also bearing in mind I am no longer on steroids at all now, my energy levels are good considering everything and my shoulders and arms are still painful by nowhere near as bad as they were so keep touching wood hoping all continues to go in the right direction  Look forward to hearing from you. Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Joe,
Just to say that I am also going to be councilled on Rituxumab and like you would be interested to hear
the good and bad stories about this drug. I posted asking for this under the drug section.
Any comments welcomed.
Good luck Joe we will be able to help each other with any fears, good results etc. x
Rose
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Julia
So pleased that the Cimzia seems to be doing the job, keeping fingers crossed for you... Consultant said that as Id recently had an infusion of Infliximab to wait 8 weeks before starting anything else, to be honest though Im wondering if it had started to work, and it was the fibro causing the pain(!) I did ring and ask if I could give it a bit longer but she said no.. Have to wait and see now.
Its great that you're off the steroids and have more energy seems really positive, will let you know what happens with me next, take care
Love Ceri xx
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Ceri Thanks for your thoughts, sorry bit late replying. Your consultant must have been convinced from their experience that the infliximab wasn t effective, but can understand your thoughts about it being the fibro causing more pain. It can get so complicated and perplexing with all the drugs we take as after 5 months of being on mtx, I now am having side effects after taking it and wondering if it is now actually working at last [lol Have a lovely weekend, just hope we see the sun Julia xx
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