rituximab (Mabthera) users..?

serah24

hello everybody
today i went to my rheumatologist and i had an examination ,she told me that some of my joints are very inflamed and others are well.. anyway we agreed to start a new medicine to see if i will get any improvement with it so she told me about Rituximab, not a new one , but i haven't tried it yet . so tomorrow i will have some tests to see whether i can start taking it...
Has anyone here got any benefits from it ? any encouraging opinions ?what about the side effects? waiting your thoughts ..

[Deleted User]

Hello Serah,
I have been on rituximab for a year now and I only am hoping that it's starting to work now, after my third dose (fingers crossed). I was told that it only really starts to work after your second dose but it probably is different for different people. Sorry, this isn't more encouraging but my RA has not been responding to anything really and I have never been in remission. I hope it will work faster for you. I never got any side effects. Just feeling very tired on the day of the infusion and then great the day after, due to the bag of steroids pumped into my vein
Good luck,

Colin1

Hello Sarah,
Well I done all the drugs including Methotexate but not much joy I then moved on to the anti TNF drugs again not much joy ended up in the wheel chair I was so ill and in so much pain. In April 2010 I started Rituximab. It was ok but never really took away the pain and most of the swelling was still there. By the Way its RA and PA from head to foot. Mid June I had my second infusion.
Within weeks I could feel the changes taking place, at first that ill sickly feeling I had 24/7 just went and the swelling in my body started to go down and the pain started to ease, yes I was still in pain but nothing near as bad as I used to be. I was out of the wheelchair and only used it on long walks or the asda trip. 2011 march it had worn off and I was back in pain and feeling ill.
April 2011 I had the next infusion second infusion beginning of may, It kicked in within a week. Its like a mirical . I have other medical problems so I can struggle a bit at times but that Rituximab has changed my life. I got that bad I could not type so had stop using this forum but hey its good and life is good once more. Fingers crossed I have not experienced any side effects and for me its all been worth while. Anything you would like to know regarding the procedure just give me a shout.
You take care
Colin

serah24

thanks Nesia and Colin really you encouraged me
@ Neisa , you've said that your RA hadn't been responding to any treatment with no remissions at all..well that's my case too!! that's why i'm hoping this one will works for me hopefully :sad:
@ Colin , your detailed infos really made a clear idea about what might be waiting me,thanks really for your help , i just want to say that i am a bit concerned about the side effects because i had some allergies with arava and actemra so i'm afraid this might happen with rituxmab:S anyway hopefully not..

serah24

hello Colin..i just like to know what are the tests that your doctor has ordered before taking the Rituximab? and also i want to know if mentioned that it's important to have the pneumonia vaccine before taking it or not...thanks

tillytop

Hello Serah and sorry for missing your post first time round.

I am on Rituximab - first infusions just over 6 months ago and waiting for potential chest infection to clear before the second set of infusions. So far it seems to be helping me with no obvious side effects.

I am just about to eat so can't reply properly now, but will post properly on your thread tomorrow to answer some of your questions.

Tillyxxx

Colin1

Hello again Sarah, hope I can help. Forst of all I should point out thats whats good for one person is not necessarily good for another and don’t want to build your hopes up. It seems I was quite similar to you as I had problems with all three anti TNF drugs. Moving onto Rituximab for me was a little bit of Hobson’s choice I was so ill at the time and the pain had become so difficult to cope with. Yes I was scared of the rituximab, scared of getting more chest infections and the other effects that other meds had on me. I think I had reached the end of the line I was even shouting and cursing at my rheumy and blaming her for my condition getting worse. So it worked I’m out of my wheel chair ok ill never go dancing again or walk very far but I’m not in all that pain and I feel better in myself.
The tests really are just blood tests they test you for any signs of ever having TB that’s the main one I came from a TB family so was at high risk as they said I had TB when I was a child. Thats about it really, Sarah I know how difficult it is but you should talk to the Rheumy nurse they will answer all your question. You don’t need to wait for an appointment just phone them and they will arrange to see you they are very good. Yes you need the Flu jab and the pneumonia jab. The rituximab is an infusion and you will be in hospital most of day when you get it so take a butty and a flask with you. Second infusion about 4 weeks later again your in most of the day. It doest hurt in any way and I’m sure you will be just fine. If you need to talk just PM me and ill reply as soon as I get the chance.
Colin

tillytop

Hello again Serah

The blood tests I had pre-Rituximab were for HIV (I was told they need to check because Rituximab is a no-no if you are HIV positive), Hepatitis, Immunoglobulins and B-Cell count (to establish a baseline against which to measure Rituxmiab response). These were in addition to the "normal" RA blood tests. Normally I think, as Colin says, they also screen for latent TB but I gues if you have already had anti-tnfs you will have been screened for this previously. They would also, I think, have done a chest x-ray but they didn't since I had had one recently.

Each dose of Rituximab consists of a set of 2 infusions - at my hospital they are 2 weeks apart and my hospital automatically gives a second set of 2 infusions after 6 months before decidiing if they think it is going to work. Thereafter infusions are as needed - and I met a lady recently who had gone a whole year between infusions and it was working brilliantly for her.

As Colin says the infusion is a long one - for me 9 hours at the hospital first time, slightly less the next so when they say you need to be there all day they really do mean it! As others have said, Rituximab is not fast acting and I was told not to worry if there was no sign of it working until after the second set of infusions. The steroid infusion which goes alongside each Rituximab dose certainly helped me though.

I understand your concern about side effects. I had been allergic to both Infliximab and Humira and I was nervous about the Rituximab. But the rheumatologist told me that the drugs all work slightly differently so just because one doesn't agree with you doesn't mean you will have problems with the others. For me, I have had no obvious side effects other than feeling completly steamrollered for a couple of days after each infusion. And it does seem to be helping.

Really good luck with it - and please do keep us posted. There are not many Rituximab posters on the forum and I really would like to know how you get on.

Tillyxxx

Colin1

Hi Tilly seems we have both trod the same path. I'm in my second year now. I was pain free ror just on 10 months last year.
had my last infusion in may last year and i'm still ok a few niggles but thats ok.
Colin

tillytop

Hello Colin

I am so thrilled that the Ritux is working so well for you and it's nice to hear from someone further along the path with it than me. Long may it continue to work for you.

Tillyxxx

serah24

Hello again Tilly and Colin really thanks for your post this is really helping me i'm still waiting for my first infusion in 2 weeks since i have done all the tests and X-rays and i just discovered that my shoulders are really bad the x-ray shows beginning of destruction in them, i don't know maybe anything is too late for them however i am thinking about my other joints especially that i had a total hip replacement for my both hips and i am not thinking about another surgeries in any case..my rheumatologist is telling me that everything we be under control since i will be in the hospital so i shouldn't be very worried about the side effects( well honestly this isn't really helping but there is no other choice..) i am hoping to benefit from it like u both said, really i am ,see u and i will keep on posting to see what will happen in the next few weeks..

ironic

Hi Serah,
Sorry I am no help at all to you re the infusions but I wanted to wish you well with them. I hope you hear something soon. Two weeks must seem an age to be worrying about starting with the first one but fingers crossed it will go well and you will feel the benefit sooner than you think.

Take care and hugs,
Lv, I

serah24

thanks Lv for your sweet post..
@ rituximab users, i want to know if any of you had discussed one of the serious side effect(PML) which is a fatal one...my doctor didn't say anything about it but i have read some articles on the net mentioning this side effect which is frightening me..so i'm meeting my rheumy on monday to ask her about it but i wonder if any of you has any informtion about it ?

tillytop

Hello Serah

Just wanted to say good luck at rheumatologist on Monday. But also to say that it is very easy to get worried about the weird and wonderful side effects listed for these drugs and I tend to take the view these days that I would rather take the opportunity to be as well as I can be now, rather than miss out on the basis of something which may, or may not happen. I admit I was nervous when I started Rituximab, after reactions to two other biologics but, so far, I am glad I decided to give it a go. I wonder if you might also be reassured to know that the UK Medicines and Healthcare Regulation Agency (MHRA) runs a "black triangle" scheme, for intensive monitoring of new drugs, or drugs which do not yet have an established safety record. And Rituximab does not appear on that list, unlike a number of the other biologics.

Good luck tomorrow.

Tillyxxx

serah24

Many thanks Tilly ,..all of your posts give me some relief and hopes about this drug...i have tons of questions to ask tomorrow to my doctor but i know she'll understand my worries because she's such a great person really...so i hope she might have some questions and informations which can reduce my worries.. :roll:

Colin1

Hey Sarah let us know how you got on when you see your Rheumy on Monday Did you say you had done the Anti TNF meds is so the warnings on them where worse i thought.
Colin

serah24

yes Colin i had tried both Remicade and Humira and it was without side effects, yet without benefit aslo..but i also tried Actemra and had allergic reaction.. i don't know..hope my body will tolerate rituximab and also benefit from it...

dreamdaisy

I'm not on rituximab, but I've 'done' infliximab and enbrel, and I am currently on humira. I have learned that what I deem as 'beneficial' may well not be what actually arrives: I was promised all kindsa lovely things when I began the H, and yes the blood tests have been (and still are) fan-dabby-dozy but . . . . . . . . . . . I now accept that I don't have the benefit I want but that life could well be a damn sight worse without it.

As to the side-effects, well, to be honest I have never given those a second thought, even when enbrel had a bloody good go at me. I want the best of life that I can get now, the monitoring is there to pick up any trouble (and in the past it has) and that is all that matters. Mind you, I have a history of rubbish health and taking nasty meds from quite a young age so I guess, to a great extent, I have lost any fear of medical drugs.

Give the rituximab a whirl, you never know this could be the one for you and could change your life: some people on here have had their lives changed to such an extent that they now rarely post - wouldn't it be good if you were one of them? If not, rest assured we will still be here! I wish you well. DD

serah24

Thanks DD for your post, you're 100% right, RA is aggressive enough to risk anything to fight it, i am too young to give up medicines and wait to see my joints falling apart...
Anyway yesterday i had my appointment with my rheumy and we signed the papers to get my first infusion by 10 feb, it's 3 weeks,too long time to think and worry but since i got today my pneumo vaccine she prefers to wait sometime to let it take its effect..so we're here, no more regrets i'm taking it to see what will happen, i don't know about the side effects which might happen , and i wish i can just stop thinking really well my doctor gave me some encouraging thoughts and told me that i will have a lot of care while taking the rituximab so hopefully things will go well..!!

dreamdaisy

Yes, these are powerful drugs and yes, there are associated risks but the careful monitoring is there for a reason and that reason is to nip any troublesome things in the bud. I wish you well with it, I really hope it helps you but be prepared for a wait to find that out! Let us know how it all goes, yes? DD

serah24

sure i will !! ...i just hope these 2 weeks pass quickly to stop thinking and predicting..

tillytop

Hello again Serah

Really glad you have decided to go for Rituximab.

Just to try to reassure you a bit - although I was nervous for my first infusions, and I know I will be nervous when I have the next ones too, I was far happier being in hospital for the infusions, than I was doing the Humira at home. The specialist nurses were brilliant and I was monitored very closely the whole time, as I am sure you will be too.

If you can, try not to spend the time between now and the first infusion worrying yourself silly which is easier said than done, I know. I worried myself into such a lather that on the day my BP was through the roof and they were thinking they might have to stop the infusion til it went down again :roll: .

Thinking of you and please do let us know how you get on.

Tillyxxx