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Rank: Newbie
Groups: Registered
Joined: 12/9/2009
Posts: 7
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Hi Everyone
I need some advice I am about to have my sixth infusion of Rituximab it is two years since I started treatment. Has anyone else needed this amount of rituximab to keep the dreaded RA at bay.
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Ann and welcome to the forum, its a great place for advice, but on saying that I'm not sure I can give you any as its a question I also might have asked. Ive had two rounds of two Rituximab infusions 6 months apart and am still waiting for it to work. I've read in other places that as it works it seems to last longer and some people go a year or more between.
Can I ask if your first round of the two infusions work? I take it that it only lasted the 6 months if you've had another couple?
I know there are others who are also on Rituximab so there maybe some out there who can better answer the question.
In the meantime, I wish you well for the next infusion.
Best wishes
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Anne
Welcome to the forum . Sorry though that you have RA. You will find this site great for help
info and even for a moan. Sorry but i have not had any dealings with your drug so
cannot add any advice. However there will be someone who will tune in here and advise
i am sure.
I am Rose aged 56 from Somerset. I failed on mtx sulph and leflun and i see the
specialist next Friday so fingers crossed they will sort me out.
Keep posting and Welcome
Rose
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Rank: Newbie
Groups: Registered
Joined: 12/9/2009
Posts: 7
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Hi Sheila & Rose
Thanks for your replies. Sheila, twice I have had rituximab in two fortnightly doses I will be having the same when I have my next infusions in November. The drug has been wonderful for six months each time but no longer my question is how many of these infusions are you allowed to have and what long term affect on the immune system do they have. I know there is a chap Richard who was getting along very well with his rituximab if he is still using the forum perhaps he would reply. Sorry Sheila the drug is not giving you the kind of response you are waiting for it really helps when works. Rose it looks as though your next port of call will be one of the biologics. I wish you both well.
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Rank: Newbie
Groups: Registered
Joined: 6/28/2010
Posts: 3
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Hello everyone, I have had 6 lots of Rituximab, the last one this June. I worry about the long term effect on the immune system. I have yet to speak to anyone who has had this much. It's worked brilliantly for me but only lasts 6 months. Since I had the last infusion at the begining of June, I have picked up a few minor infections...cold, a sick bug, water infection and now my stomach is playing up again. I wish everyone well taking this stuff. To be honest, it terrifies me somewhat!! But there's nothing else that works. Louise
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
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Hello Louise and Ann,
I am a patient on Retuximab and have been on it for 3 years. I would like to point out that the two infusions, two weeks apart, is ONE treatment. After my first treatment, I needed another one 6 months later. The second one was a year later and the third one about 14 months later. So the treatments are becoming wider spaced. The disease has stopped rampaging around my body (thank goodness), but I'm afraid the damage is done. Quite honestly, this has been the best treatment I have had in 20 years of being host to 'Arthur' and I feel relatively well on the drug. I have no concerns about side effects because the consequences of NOT taking it - well ... I just don't want to even think about it  I feel that my quality of life now matters - not what might happen years down the line.
I have an arrangement with my rheumatology nurse that when I get the nasty pains coming back, they have me in to check the RA activity and then decide whether I need another treatment or whether I have an infection. I have not had a serious infection and illness since I started taking it and I have had a hip replaced and also a triple arthrodesis (foot op) while I have been on it. The fatigue is something that we all have to manage. This is a great drug for some people but not everyone can tolerate it.
I don't know whether you can access the old Forum, but I did do a blog on the first couple of years of treatment.
Why not Google 'Retuximab'? The Roche page will come up and you can learn more about it.
Do ask if you have any questions.
Best wishes, Ann (Monty)"I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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Rank: Member
Groups: Registered
Joined: 11/27/2009
Posts: 15
Location: Reading
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I think that, as with most things to do with RA, everyone is different! This makes the selection of treatment difficult for the professionals and also difficult for us to compare our experiences. However, in case it helps, I have had 3 'treatments' of RTX (= 6 actual infusions as Monty has pointed out). The last was 3 years ago next January and it has put my RA into remission. I no longer need anti-inflammatories nor painkillers. Improvements were noticed 2 - 3 months after each treatment. I was lucky enough to get onto this treatment before too much damage was done so, apart for sore feet, I'm fine now and my blood measures (ESR & CRP are all down from over 100 to normal figures. But clearly it doesn't suit everyone with RA and, even if it does, it may not work so well. RichardL
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Rank: Newbie
Groups: Registered
Joined: 12/9/2009
Posts: 7
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Hi Richard
Its great that you have been so well with the Rituximab It seems to suit me as well although I have had my third set of infusions each RA flare is not so intense as it used to be I hope that I am lucky enough to have the same sort of remission in the future as you. I wish you well. Ann-G
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Rank: Member
Groups: Registered
Joined: 11/27/2009
Posts: 15
Location: Reading
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Thanks for your kind wishes, Ann. I doubt that the 'remission' is permanent (although I would like to think that it is!!  ) so we are travelling as much as possible while I can. Bit of a setback, though - we were planning to go on a safari to Kenya or Tanzania in the spring but have discovered that yellow fever vaccination is needed. As this is a 'live' vaccine and, being immunosuppressed, I am not supposed to have live vaccines, that is clearly out. Any suggestions for good wildlife viewing without the need for yellow fever jabs?? RichardL
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Rank: Newbie
Groups: Registered
Joined: 12/9/2009
Posts: 7
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Richard, I think it is great that you wish to travel as much as possible but please be careful. I have been on safari as a youngster had food poisioning and a bad chest infection when I arrived home there as so many wonderful holidays that dont need the live vaccine invest in an HD box from sky and watch the increadible David Attenborough its just like being on safari.All the very best whaterever you decide. Ann-G
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Rank: Newbie
Groups: Registered
Joined: 12/27/2009
Posts: 1
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Hi Richard
This is my first posting but I must tell you that two years ago my husband and I had a fantastic trip to South Africa. At the time I was on Humira. We followed the Garden Route from Cape Town and visited a private concession. Not cheap but the experience of a lifetime with safaris out early morning , and evening to darkness. As private, no hoards of tourists and no pressures to get back to the lodge for meal times etc as only about 8 residents. I do hope that you do make it as it was one place we would return to. Cathy-T
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