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Rank: Newbie  Groups: Registered
Joined: 1/21/2010 Posts: 3 Location: Glossop, Derbyshire
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Hi, has anyone had the drug Rituximab by infusion, this is done in hospital with a overnight stay for fist intravenous infusion.
I would like to hear from anyone who has had this or currently having it and what there experience was. Also did they suffer any side effects. I am due to start treatment very soon as I have failed on Humira injections, Thanks guys. Paula.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi Paula
I was on Humirs for nearly 3 years it was wonderful drug but sadly I had to stop taking it
as for RTX yes I am on that now I have had 2 lots of it
the first infusion I sat in the clinic for 7 hours I did not stay over night had the second infusion was two weeks later but stayed for 6 hours only that tims
the second lot was 3 months ago
it has now started to work for me
I also have MS the rtx helps with this too
hope you get on with it
good luck
Mary L
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Rank: Newbie Groups: Registered
Joined: 1/21/2010 Posts: 3 Location: Glossop, Derbyshire
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 Thanks for that Mary, just one more question, do you take Methotrexate as well as Rituximab? Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi
yes I take 20mg mtx weekly
have taken that for the 14 years of having RA
please do not worry about the infusion it is not that bad
good luck with it
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Paula , i started Rituximab on November 4th and then had another 2 weeks later, i did not stay in over night i went in at 10am and was started at 11.30am home at 9pm i was first given antihistamine then steroid then Rituximab had to wait half an hour between each infusion , they check your blood pressure and temperature and your breathing every half an hour i was put in a bed which was great as i was really tired after a few hours , i had a sore throat for a bit too , had flushing in my face also, it was very long day so take some magazines, food, drink and maybe an ipod, first couple of weeks i felt awful just ached all over , was not looking forward to coming off my Cellcept the month later as i have always had bad flares when coming off drugs but i have not had one !!!! i am scared to say this in case i jinks myself , i go to clinic in March to see if Rituximab works for me at the moment i am very happy with it, hope this helps you
Sophie x
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Rank: Member
Groups: Registered
Joined: 11/27/2009
Posts: 15
Location: Reading
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Hi Paula,
I had my first RTX infusion in October 2006. I have had two sets of infusions since then, the last being January 2008 and I have not needed any more since then. My infusions were always given without any need for an overnight stay. You are carefully monitored during the infusion as it can have side effects, and they will adjust the infusion rate if necessary. I was given some preliminary treatment just prior to the infusion to prepare the body for the RTX - paracetamol, piriton and a steroid and I believe that this is normal procedure. My only reaction (other than an immense improvement in my RA symptoms) was flushing to the upper thorax and face that evening and the next day. I do take MTX by injection still - although it did nothing for me in the two years before RTX. I am currently almost back to normal and do not need painkillers nor anti inflammatories. Good luck.
RichardL
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi I did have some serious side effects but understand that this is rare and by no means the norm. I know from the group of people I took this with that the first infusion can make you feel a bit on the groggy side and that in the 2 wks between infusion 1 and 2 you can have a bit of a flair up but not all people get this. They monitor you closely throughout the infusions. You need to carry a card saying you have had RTX up to 2 yrs post infusion. One lady in her late 30s took it with me and has been rock climbing all summer and skiing this winter! I has changed her life and she is really really well. Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 43 Location: Burgess Hill, West Sussex
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Hi Paula,
I am sitting here 4 months after my 3rd cycle of Rituximab and am feeling the benefits. Sadly, Rituximab only works on my RA and has no effect on the Fibromyalgia and which I have as secondary conditions. Having said that, I feel so much better as a result of RTX and there are things I can do now which were more difficult before.
I admit that my first cycle of RTX didn't work at all but my 2nd cycle 6 months later was a resounding success and my 3rd cycle is working also.
Ii went into the day ward at hospital at 9am, started my infusions at 11am and was home by 6pm. I was checked every 3- minutes for BP, etc but was pleased that I didn't have to stay in. I kept a Rituximab Blog on the old NRAS Forum - pity it wasn't copied over.
Good luck with your infusions - I hope they work for you as they do for me.Bob
A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has.
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Rank: Newbie Groups: Registered
Joined: 1/21/2010 Posts: 3 Location: Glossop, Derbyshire
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Thank you so much for all your comments, well I had my first infusion on the 26th, I had antihistamine tablet first then steroid infusion then Rituximab, I was fine until they up'd the speed for the third time about 2hrs in, my head began to feel itchy then the back of my neck and ears, I started to feel very hot and my face and neck went very red and spotty, after the doc came there was a few discussions and it was commenced again very slowly. I was fine after about an hour and my body started to calm down, just felt extremely tired. The infusion finnished at 10.30pm and I stayed in overnight for monnitoring. Since I have been back home I have started to have a flare and still feel very tired, I have to go back in 15 days time to have the second infusion and must admit I was feeling quite scared but after reading your comments I feel alot better and not so worried as my symtoms seem to be not that unusual. So thanks guys for your support.  Paula x
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