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Date: 28.07.2010
From: DELL

Subject: ANYONE HAD RITUXIMAB INFUSION

Hope someone can help, rough background- Im 56, had RA for quite some time, tried all the drugs (saphasalasine, mycophenolate, asathyaprine) and am no better. RHUMY has offered RITUXIMAB as a last resort, any body had any joy with it? I took VIOX for a long time(until they banned them) they were good, now take ARCOXIA they are also very good for swelling (90mg per day min) but everything stops working eventualy. thanks.
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Date: 28.07.2010
From: paul

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

never used it but would love too,

here's a small piece on the drug from the bbc website which i read a while ago and since then wished i was on it:

http://news.bbc.co.uk/1/hi/health/8102351.stm

I'm about to start Cimzia an anti-tnf drug but if that fails i will hopefully go on Rituximab.
Its funny as Rituximab is actually cheaper than anti-tnf drugs..

I wish you well and keep us all informed how you get on :-)

Best regards

Paul
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Date: 28.07.2010
From: Jayne

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Yes, I had rituximab 4 months ago, but afraid I didn't see any improvement at all. I had previously had enbrel and humira which were in my opinion more more effective, but nothing works for very long, sorry ..................
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Date: 30.07.2010
From: Dell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Thanks Paul & Jayne for your reply. Still waiting word from my rhumy, it always takes ages before they act on his advice, hopefully before xmas. It got so bad i called the doctor and was given PREDNISOLONE 5mg, Took 8 tabs for 4days and decreased over a week, plus oramorph. Feel like brand new swellings gone down, pains managable. It wont last, done it before lasted a few weeks. Sorry you had no luck with Rituximab, they do say everyone is different so Im still hopeful. I'll keep you informed. Dell
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Date: 02.08.2010
From: Tiff

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi dell im hopefully going to start the 1st batch of the infusion on wednesday coming. It has also been given to me as a last resort so fingers crossed it will work :) I have also been told to go on a higher doese of prednisolone and joints are better but the only problem is they make you feel rubbish :/ but yeah i'll keep you informed on how it is all done and what you need to do before and after. Tiff
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Date: 03.08.2010
From: dell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi Tiff, Good luck on Wednesday, I hope it works for you. It would be great if you could keep us all informed, I know its no miracle cure but some relief would be nice. I also have diabitis now so have to be careful with steroids as they put my sugars up. Lung damage due to arthritis prevents me from having methotrexate so hoping the rituximab works. Fingers crossed, Dell
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Date: 11.08.2010
From: Dell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi Tiff, Would love to hear how you got on if your well enough m8. Dell
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Date: 14.08.2010
From: Jo

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi. I'm about to have my fourth rituximab infusion. I have them annually. I know what you mean when you say it doesn't work as it doesn't seem to have any immediate effects! I think it does generally keep the disease under control for the long term though, as I was chatting to my consultant this week, going through graphs of my blood test results and they seemed to be better around a few months after my infusion.

I'm on 4mg daily of prednisone and 25mg of lefluonomide as well as 400mg of ibuprofen. I think the drug which makes the most difference is prednisone!

I think we should all listen to our bodies and go for what we think is best for us.

Good luck xxx
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Date: 14.08.2010
From: dell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi, Jo. Nice to hear it can work to a degree, I have been really bad last few months, CRP has gone from 15 to 48, lots of pain. Dr put me on 15mg daily of perdnisolone, I've been on them a week and touch wood I can move again, all the swelling has gone down and am nearly pain free, shame we cant be on high doses all the time. I am still waiting to hear about my infusion, soon i hope. I find arcoxia works best for me as ibuprofen upsets my stomach. Thanks for your imput, hope your painfree today. Dell.
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Date: 15.08.2010
From: Jo

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi dell. I've been quite lucky actually and am virtually pain free. Although my consultant did say it's inevitable that I will need a shoulder replacement at some point! Think I'll delay that one as long as possible!! :(

Tell me more about your lung damage?? That concerned me when I read it!

Prednisolone is great!!

Good luck with your meds and hope you have a good day x
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Date: 16.08.2010
From: Dell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi. Jo, Chest X-rays showed fleck type damage on both lungs and it was thought to be caused by RA, I did smoke for a lot of years but stopped when I was informed of the damage, the doctor did'nt think it was smoking related. I was refused methotrexate because it can damage your lungs. I was put on mycophenolate (no joy) and am on asathyaprine now still no joy. Am hoping the RITUXIMAB will offer a more long term solution but until then thank god for prednisolone. Still pain free hope you are, Dell
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Date: 14.09.2010
From: Ann Randell

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi, first time i've commented on any page and it's good to read other's comments. Had RA for 3 years. Tried numerous treatments. The best was Methotrexate but it caused lung damage so i had to stop. Hoping to start Rituximab infusions in about 6 weeks so 'fingers crossed'
Ann
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Date: 11.06.2014
From: Frances

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Starting rituximab next week and feeling nervous.My specialist nurse informed me it killed some men who were on trials by it a few years ago.yes I do remember it in news but dont think she should of reminded me of it.Been on methotrexate which worked until dose was put up to highest amount so caused irritation of liver and breathlessness.tried humira and enbrel too.daily am on 10mg predisolone,2000mg sulfasalazine,500mg pregabalin.use ibuprofen gel on hands too.am really nervous about side effects so has anyone experienced anything and will it work
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Date: 11.06.2014
From: rhona

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

I have had 3 courses of rituximab, Frances. It has really helped me and I had no problems with the infusions. I have tried Enbrel but it didn't help me at all. It can take a while for it to work though. Hope it helps you. If you want to know anything else about it then just ask and I will happily answer.
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Date: 12.06.2014
From: Frances

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Thankyou very much Rhona.I feel less nervous now
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Date: 26.12.2014
From: suze

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi Im 42 and are now on retuximab I had my first infustion last week and are due on wed for my next one. I was fine whilst having it but have felt like I have a dizzy head for a few days now. I am really worried what my future will hold if this treatment doesn't work as this drug is always the last resort HELP xx
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Date: 26.12.2014
From: rhona

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Hi Suze, I seem to remember feeling a bit dizzy and having a sore neck when I had my first infusions. It took 4 months for it to become effective with me, I had about given up on it working and then after having a couple of steroid injections it started to work. I have been really pleased with it. Hope it works for you. x
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Date: 29.12.2014
From: suze

Subject: Re: ANYONE HAD RITUXIMAB INFUSION

Im going in for my 2nd infusion on Wednesday and so far im not noticeing any benefits x x
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