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Date: 14.07.2007
From: Medwaylass

Subject: RA Treatment - Retuximab

Anyone had/heard of the new treatment given once a year via an infusion called Retuximab - should last 12 months. I have been offered this but would like to hear from anyone who has tried it. Thanks
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Date: 26.07.2007
From: Donna

Subject: Re: RA Treatment - Retuximab

Hello

I have had this twice, it is given for 4 weeks once a week, because I have lupus/arthritis and ITP it did help initially, but after 12 months I still endure the problems. I did have a couple of funny turns whilst having the drug infused.

I am currently on a high dose of Pred and I cannot stand it puffy face, I have bloated in last week and I feel very uncomfortable. They are still trying to find a right drug for me.

Sorry I cannot be of more help, but unfortunately for myself it did not work for me.

donna
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Date: 24.09.2007
From: Richard Porter

Subject: Re: RA Treatment - Retuximab

RITUXIMAB is given once and then repeated after 2 weeks. It is generally holding peoples symptoms at bay for 8 - 18 months. In severe disease it can be used more often than annually
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Date: 01.11.2007
From: Richard Dunt

Subject: Re: RA Treatment - Retuximab

Hi,
I had my first infusion two weeks ago, and am going for the second tommorow.So far there dosn't seem to be any improvement, but it can be several weeks before any benifit shows. I will keep you posted as to how things go,keep your fingers crossed for me ,as this is the last of a long list of drugs, at least for the moment. Rich..
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Date: 17.11.2007
From: Richard Dunt

Subject: Re: RA Treatment - Retuximab

Well its been just over two weeks,and the only noticable improvement is I don't feel so tired as I did. It can take a month or more to see how well it is going to work,and then it won't put right any physical damage,only the surgeon can do that(having second hip done in two wees time)
Is ther anyone else out the who have tried Rituximab, would be interesting to compere notes.
Bye for now Rich
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Date: 15.12.2007
From: Richard Dunt

Subject: Re: RA Treatment - Retuximab

It is six weeks now since the second infusion and I definitly think it was worth having, as I feel much better,as I said before,I am not so tired and feel more with it! My joints are much less swollen,although this hasn't reduced pain level much,probably due to damage already done.
Am going in for hip op on 17th(delayed two weeks),
have to see about shoulders next!
bye for now Rich
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Date: 22.02.2008
From: Carla

Subject: Re: RA Treatment - Retuximab

does any one knows which is the firm who sells retuximab?
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Date: 22.04.2008
From: Gemma

Subject: Re: RA Treatment - Retuximab

Carla,
Rituxan (Rituximab) is made by Genentech Inc and are based South San Francisco, California. RITUXAN (Rituximab) in combination with methotrexate is indicated to reduce signs and symptoms in adult patients with moderately- to severely- active rheumatoid arthritis who have had an inadequate response to one or more TNF antagonist therapies.
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Date: 16.06.2008
From: lynn Warelow

Subject: Re: RA Treatment - Retuximab

my husband has cronis RA and in Jan this year was diognoised with stomoch cancer and needed to have his full stomoch removed he has been on all the tnf drugs and most of the other medications due to haveing no stomoch and a link to cancer there are alot of drugs he cannot have do you know of anyone else who has a simular problem and what medications would be available to him now, we have just been told abourt retuximab and awaiting more information many thanks
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Date: 29.07.2008
From: Sarah

Subject: Re: RA Treatment - Retuximab

had 2 couses of retuximab now, 6 months apart, as I have both RA and SLE. I have to be careful as I have severe epilepsy, and do get side effects, more fits etc. It did not have much effect on the joint pain, but as far as I am aware, St Thomas in London is the only hospital that can test your B cells to see what effect the drug has actually had on you. I attend the Lupus unit there, travelling over 100 miles each way for my appointments, but it's worth it. Been told that if I fai lthis drug they will consider Abatacept?? Anyone out there reached this stage yet?
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Date: 28.08.2008
From: Jilly

Subject: Re: RA Treatment - Retuximab

Hi I am about to start Retuximab just having a few tests first. I am going to have some cells taken from my knee to see if the treatment reaches into the joints. How did everyone feel after infusion? were you still able to work? (those that do ) I am a teacher and am ancious to know any side effects after. I am having 3 infusions 2 weeks apart. I still take all the usual drugs (methatrexate etc.)i was on etanercept injections but developed anti tnf antibodies so this treatment has been offered.Still pooping myself about the infusion side effects as I had to come off infliximab because of them.
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Date: 29.08.2008
From: Trish

Subject: Re: RA Treatment - Retuximab

My daughter is due to start this in Southern Ireland in 6 weeks time - after a very long list of 'miracle' drugs that didn't perform any miracles?! She had Juvenile Polyarticular Arthritis (now known as JIC) from the age of 4 (she's now 21) and then it metamorphosed into RA at some point. I know it would be good for her to at least feel less tired - but has it actually reduced the pain of RA for anyone? Also, does anyone know if it affects pregnancy in any way - she hates taking methotrexate (so I hope it isn't part & parcel of the Retuximab treatment) because you have to have a termination if you become pregnant while taking it ..... she's desperate to be a mum!
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Date: 29.08.2008
From: Robert Campbell

Subject: Re: RA Treatment - Retuximab

Hi,
After a stand-off with my PCT, I finally had Rituximab infused in May (2 sessions, two weeks apart). I was beginning to give up hope at 12 weeks after infusion when, Hey Presto! things started to get easier. I was less fatigued, was able to drive again and was able to reduce the amount of medication for breakthrough pain. This is it I thought. After a good spell of 6 weeks, I'm starting to notice that I am becoming more stiff in the joints 1st thing and am starting to feel more fatigued. I guess that I've had my RTX remission and will probably need another cycle in a couple of months! Ah well, we can't have everything good for too long. Hopefully, the new cycle will take effect sooner and last longer.

Take care one and all and keep well.

Bob
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Date: 20.11.2008
From: Max Maxwell

Subject: Re: RA Treatment - Retuximab

The pathway to health will not be found by reliance on pharmaceutical drugs. RA sufferers who do not have the rheumatoid factor in their blood should suspect an emotional involvement, most probably long standing repressed unresolved anger or bitterness towards someone in their current life or in their past. A good website to look at for natural (non-drug) treatment of RA is www.mercola.com.
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Date: 04.12.2008
From: Anna Giles

Subject: Re: RA Treatment - Retuximab

I am going into hospital to try it for the first time today and im pretty nervous im only 18 and they've never tried it on my illness before so im worried of any side effects :S Tho anything has to be better than Prednesilone!
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Date: 24.03.2009
From: Jo

Subject: Re: RA Treatment - Retuximab

Hi all. I've had RA for approx 8 years. I had my first Retuximab infusion a year ago and it has worked quite well. No need for any worries. My other medication is 5mg of prednisolone daily and and lefluonomide. I'm about to have another infusion in the next couple of months.
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Date: 27.03.2009
From: Jill

Subject: Re: RA Treatment - Retuximab

Hi Jo...those infusions, how often are you having them? sounds ignorant I know but is that instead of the Injections? I was offered infusions at the hosp, but my Biologics nurse said I would be better on the Injections weekly

Jill
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Date: 29.03.2009
From: Jo

Subject: Re: RA Treatment - Retuximab

Hi Jill, I have previously had Humira injections before I started on the Retuximab infusion. I have only had a Retuximab infusion once and that was a year ago - the normmal - with 2 weeks apart. The Humira didnt work with me and everyone at work said I seemed to go downhill after starting it. I would much prefer to have an infusion once a year instead of injecting..... I suppose it depends on funding and which area you are living in!
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Date: 30.03.2009
From: Jill

Subject: Re: RA Treatment - Retuximab

Hi Jo... Yea I agree, once a year sounds good to me... I might ask my specalist about that for me, I dread Injecting each week...plus its sore too

thanks for that info Jo

Take care
Jill
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Date: 31.03.2009
From: Jo

Subject: Re: RA Treatment - Retuximab

I suppose it's all individual! I hated injecting myself - in fact when I first did it I saw an air bubble and panicked, so i rang the helpline thinking I was gonna pump air into my system! They laughed their socks off as it was a sub cutaneous injection!! That does make me giggle now!

Also when I had my infusion last year I felt really dozy and thought it was the powerful drug going through my system, then the infusion nurse said it was more than likely the piriton which you have to take to prevent any allergic reaction to the retuximab. The anaphalactic shock pack on the table next to me did make me panic a bit but it was all fine and the next date of my infusion (2 weeks later) I was asked to reassure another patient so that was nice! I had a nice private room with a bed last year to myself and this year I will be sharing it with another woman in a tiny room with 2 reclining chairs. I suppose I was spoilt last year!
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Date: 01.04.2009
From: Jill

Subject: Re: RA Treatment - Retuximab

we all need spoiling Jo... but hey, that other person may be able to help u with info etc, however, if she doesnt, dont panick Ok, we are all different and things happen to us at different stages, and sometimes less chronically...so chin up...lets us know how u got on
love Jill
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Date: 01.09.2009
From: Louise

Subject: Re: RA Treatment - Retuximab

I've just had Rituximab, 2 infusions over 2 weeks, and disn't get any side effects and felt fine throughout.
Feeling loads better, as I had a flare up of myositis which is similar to RA, but that's prob the high dose of pred I'm on, apparently it can take 3 months for this stuff to kick in!
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Date: 01.09.2009
From: Lynne

Subject: Re: RA Treatment - Retuximab

Pleased your feeling a little better Louise, Im on enbrel myself they have beebn really good meds for me
Wish you luck take care xx
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Date: 12.09.2009
From: Hannah

Subject: Re: RA Treatment - Retuximab

Glad to hear some positive things about Rituximab, I'm going to speak again to my nurse shortly as my rheumy has let me decide between two different drugs. Take care all
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Date: 30.12.2009
From: Kimm (The Netherlands)

Subject: Re: RA Treatment - Retuximab

I've had Rituximab several times. It really worked for me. At first my doc gave it because I was diagnosed with ITP, 2 years later they found out it was one of the symptoms of SLE.
I've had Rituximab once a week, for 4 weeks, and to control my SLE I've had it twice, once a week. This combined with Prednison (what a ******* drug) and Endoxan (chemo) I've had 3 'shots' of Endoxan. I'm feeling great for almost 4 years now, so I can say Rituximab really worked for me!
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Date: 13.02.2010
From: Janet

Subject: Re: RA Treatment - Retuximab

I've just had my second set of Rituximab treatments (the first was March last year)
The first lot took a few months to work but when they did I felt great for about 6 months then the RA started to come back, I was hoping it was going to last a bit longer!
I had no adverse reactions to the drug the first time but this time I have been OK during the infusion but the next 24 hours have been awful, sweats, chills, fever, fuzzy head the lot. Has anyone else experienced this?
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Date: 14.02.2010
From: J

Subject: Re: RA Treatment - Retuximab

Hi Janet, hopfully someone will answer u, I havnt had the infusions, so cant help u, all I do want to say it is, My Bio Nurse told me tht she wanted me to go on Enbrel, as going into hosp was slight risks, due to colds flu, etc, beco the immune sytem is compromised badly, so I opted for Enbrel....so im just wondering, if maybe U caught a chill, or a bad cold whilst being in hosp?? just a thought, hope u get better soon, mite be good to ring ya nurse ok...let us know what she said...tc Jill x
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Date: 15.02.2010
From: julie

Subject: Re: RA Treatment - Retuximab

Hi Janet ive been on rituximab for well over a year for r/a my last one was in december and i got a chest infection and i got sweats, you nee to contact your nurse just to be on the safe side. hope everything goes ok.
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Date: 19.02.2010
From: Janet

Subject: Re: RA Treatment - Retuximab

Thank you for your comments, I contacted my nurse and she sent me for a blood test, I haven't got the results back yet but I feel OK now. The symptoms only lasted just over 24 hours so I guess it was a reaction to the drug.
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Date: 06.03.2010
From: tracy

Subject: Re: RA Treatment - Retuximab

hia, i'm on enbrel at the moment but it seems to be wearing off, i've been advised by my nurse and consultant to go on retuximab but not sure what to do. How often do you have the infusions and how long does the infusion take? all help would be very much appreciated. thanx tracy.
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Date: 08.03.2010
From: Jill

Subject: Re: RA Treatment - Retuximab

Hi Tracy, been told the infusions take about 4 hours...but im unsure how often u have it done, every 4/6 months I think ? anyone help with this question from tracy? let us know how u get on Tracy good luck Jill
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Date: 20.03.2010
From: debs

Subject: Re: - Rituximab

hi Iam new to this site, just found it!! which is good.....Iam 39 female, ..well i have Urticarial Vasculitis (just over 12 months ago i was diagnosed) and been on 3 different drugs but either affected my liver or not worked so next one is Rituximab by infusion - Mid April I start and Iam terrified!! not of the needle just how it will affect me.....and the procedure. at the moment iam just taking my daily steroids for the inflammation, can anyone re-assure me???
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Date: 20.03.2010
From: J

Subject: Re: RA Treatment - Retuximab

Hi Debs, welcome to our fab forum.....someone will help u 3with your question, I dont know what that is im so sorrry....all I know is some of the members have infusions, apparently other postings have said its No big deal....so try stay calm, hard to do I know, takes about 4 hours to do...did your Nurse Not discuss with you what to expect? anyway hope all goes well, and im sure others opn here can support u, let us know how u get on tc Jill
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Date: 21.03.2010
From: Phil J

Subject: Re: RA Treatment - Retuximab

Hi all, had my first infusion of Retuximab two weeks ago now and found the experience to be no problem at all. Before the main medicine they give you some steroids which help with the retuximab. Then its the long long wait for the drip to slowly empty into your arm. Really the worst part of the whole process is the waiting and reading out of date hospital magazines.
Since the first infusion I have been a little more able to do a few tasks, although this is probably due to the steroids given. I had no side affects to talk of, apart from one annoying one for the first time in many years (42 now) I seem to be breaking out with acne, but hey a minor inconvenience compared to RA.
Back now tomorrow for the next part of the infusion which I am told doesn't take so long, any relief will be welcome no matter how long it may last for. The really worst thing is sitting there for hour on end looking at a wall that should house a TV that the department has been waiting for now for over a year, ahhhh NHS don't you just love it.........Take care all xx
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Date: 22.03.2010
From: Verity

Subject: Re: RA Treatment - Retuximab

As if they dont have a TV Phil! Bloody hospitals! Ive found I get spots since ive been on MTX. Maybe sommet to do with the crappy immune system? Hopefully will be starting etanercept soon.
Hope youre well

xx
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Date: 22.03.2010
From: Janet

Subject: Re: RA Treatment - Retuximab

Tracy
It does take a whole day for the treatment. The first part is an anti-histamine tablet & paracetamol. then the Steroid infusion, wait half an hour, then the rituximab infusion over about 4 or 5 hours. You have your blood pressure taken every half an hour and if it goes up or drops the infusion is slowed. At the end of the infusion you have to stay another hour before you can go home. A long day!
Something you may or may not be told is if you are taking medication for high blood pressure DON'T take it on hte day of the infusion.
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Date: 23.03.2010
From: Verity

Subject: Re: RA Treatment - Retuximab

Gosh I never realised the infusion Meds took so long! Fair play to all those who are on Retuximab xx
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Date: 01.05.2010
From: Tom

Subject: Re: RA Treatment - Retuximab

Hi, I've been taking retux for 4 years to slow an overactive immune system, had 4 double infusions and about to have the 5th set. First time took 13 hours since had allergic reaction. Now do antihistamines one week ahead. Infusions now take 5 hours. Over these years, have had no side affects to note. Also take cellcept so get blood tests every two months to make sure liver function is normal and white count OK. constant follow up is key to success overall. The results are good so far and would probably be blind if not for this treatment. Advise? Don't worry, everything is going to be good. Wear comfortable close, have a light blanket if the infusion center doesn't 'cause you get a bit cold (putting a liquid in your system at room temp or 25 degrees below your blood temp), and bring a good book.
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Date: 02.05.2010
From: Lynn B

Subject: Re: RA Treatment - Retuximab

Thanks Tom appreciate all that good advise.
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Date: 15.05.2010
From: debs

Subject: Re: RA Treatment - Retuximab

many thanks for all your replies. I start Monday 17th so i`m not so nervous now!! cheers debs
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Date: 18.11.2010
From: Laurie

Subject: Re: RA Treatment - Retuximab

My mom has had retuximab 2 injections and it held her arthritis at bay without pain for almost 3 years. She has just had her 1st of 2 injections this month and we hope it will last as well as the first set.
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Date: 24.11.2010
From: AliBaba

Subject: Re: RA Treatment - Retuximab

Max,
There are other causes of arthritis without having the rheumatoid factor present you know!!!
It's called seronegative arthritis and includes a range of problems including enteropathic arthritis which is what I have. It also includes all the conditions that fall under the umbrella term of spondyloarthropathies e.g. ankylosing spondylitis. I'm sure anyone suffering with this who has a problem with parts of their spine being fused together would love to know this is due to repressed anger!!
Of course you are entitled to your opinion but the factual information is incredibly easy to find if you look for it.
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Date: 14.12.2010
From: Sandra Bratton

Subject: Re: wegenes granulamatosis Treatment - Retuximab

Hi iam due to start Retuximab after a severe relapse of the disease, has anyone out there taken it for this complaint....
Sandra
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Date: 15.12.2010
From: Janet

Subject: Re: RA Treatment - Retuximab

I had my second set of Rituximab treatments in February 2010 (the first being March 2009) despite feeling ill for a few days after the treatment and a slowish response this time, I'm now feeling the best I have for a long time. My CRP is down to 19 after a high of 240 before I started the drug, you can imagine how that makes me feel.
I can't comment on how Rituximab will effect other diseases but can only suggest trying it and hope it works as well for you as it does for me.
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Date: 15.02.2011
From: George Ashford

Subject: Re: RA Treatment - Retuximab

Hi Tracy,

I work for a market research company that specialises in the medical device field. We are looking for RA sufferers that inject Enbrel and either live in the London area or are willing and able to travel to London to take part in an interview. The interview will relate to a new device to help RA sufferers administer their drugs. We will pay £200 to cover expenses and the interview would last approx 90 minutes.

Would you be interested? Please do get in touch if you would like to know more - george.ashford@creativemedicalresearch.com

Best regards,
GeorgeElen Sentier
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Date: 23.07.2013
From: marlene

Subject: Re: RA Treatment - Retuximab

Hi There, you might be better off going to the top of the page and clicking on "start a new topic". Good luck.
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Date: 01.05.2014
From: Charlotte

Subject: Re: RA Treatment - Retuximab

Hi,
I had my first infusion of Retuximab on Monday. I was so scared about the whole thing. I am petrified of canulars after bad experiences in the past. But I wanted to try the new treatment as have tried Methotrexate and Humira with not much joy.
The Retuximab infusion was no where near as bad as I thought it would be. It was a very long day in hospital though. Took about eight hours in total. The piriton and hyrdocortizone pre med was horrible made me feel so drowsy almost instantly.
The Retuximab infusion was fine most of the way through and painless at the lower infusion speed. It was when it got put up to 200 mg/hr it started to feel a little bit uncomfortable.
As soon as I got home from treatment I just wanted to sleep. I felt sick, drowsy and dizzy.
It's now been three days since the infusion and I still feel drowsy, don't have much energy, and just want to sleep all the time. I've also had an upset stomach, keep feeling sick and a headache.
Has anyone else had any similar side effects after their first infusion?
I'm meant to be back at work at the weekend and I'm worried that I'm not going to feel up to it :(
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Date: 06.03.2016
From: Daksha. Patel

Subject: Re: RA Treatment - Retuximab

Hi there ... Are you still looking to interview RA patients on rituximab. I am interested.
Thanks. Daksha patel
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