rituxamab

sharonr123

any one else been on this, i am suppose to be starting on it in the next few weeks and would appreciate any ones feed back that as been on it as the side effects scare the hell out of me. I have tried all over meds all dmards and 2 biologic meds previously but this one seems to be the worst one for side effects, would love to here all your views about it.
thanks sharon x

tillytop

Hello Sharon

I'm on Rituximab - as my third biologic - and will be happy to give you some info. I will log back on later but, having been asleep all morning :roll: if I don't go and have a shower and get dressed my day will have disappeared!

But just to say that, whilst I understand your concerns about potential side effects, I think you will find that if you compare the patient info leaflets for some of the other biologics, they are pretty much the same as for Rituximab. And, whilst some of the other biologics are on the Medicines and Healthcare Regulation Agency (MHRA) "black triangle" list of drugs whose side effects have to be reported and carefully monitored, Rituximab isn't (or wasn't when I was doing my research). Having had particular difficulties with one of the others, that certainly gave me some confidence. I had my second cycle of Rituximab infusions about 4 months ago and have experienced no side effects other than feeling completely "poleaxed" for a few days after the infusions (and I don't like the longer term effects of the accompanying high dose steroids, but that's not the Rituximab's fault ).

Anyhoo, I'll be back on later to reply properly - and there are a couple of other "Rituximabers" on here so hopefully you will get some other replies too.

Tilly xxx

sharonr123

hi tily,
thanks for the feed back, this will be my third bio med, had enbrel and inflixmab last time and had a really bad flare with the infliximab so i was taken off it, i have had a steriod injection while i am waiting to go on retuximab but i don,t think it has worked. still flaring pretty badly .
sharon x

tillytop

Hello again Sharon!

So, like me, you are an "old hand" at biologics :roll: I'm sorry you had trouble with Enbrel and Infliximab and that you are still struggling despite your recent steroid injection.

What to tell you about Ritux? Well, the first thing to be aware of is that is is definitely not fast acting. When I started I was told that it could be up to a year before I would know whether it was going to help or not - which is obviously a long time to wait when you are struggling so much. But, on the plus side, everyone is given a steroid infusion alongside each Rituximab infusion to minimise the risk of allergic reactions and, in my case, this helps my joints pretty quickly. For me, the downside of that is that I don't like how high doses of steroids make me feel, head-wise and it does seem to take a while to wear off. I think that if the Rituximab does its stuff for me though, that is a good trade off.

You may already know this, but Rituximab is given in cycles of two infusions a fortnight apart. At my hospital (and I think this is pretty standard) they routinely give another cycle of two infusions after six months and after that, as needed, depending on response. At the hospital I met a lady who was very happily going a year between infusions and she was doing absolutely brilliantly on it! She was not a young lady but was positively sprightly! Conversely, I sat next to a man last time round who finds that it helps him for about four months and, because the minimum time between infusions is six months, he is really struggling badly again by the time his next infusion is due. That said, the difference in him between the first and second infusions of the cycle was pretty staggering! He was struggling to walk and clearly in a great deal of pain the first time I saw him. And two weeks later, he strode past me in the corridor on the way to the ward! And although he is clearly still struggling, he said the Ritux has made a huge difference.

Side effects wise - for me there have been no side effects so far - other than being pretty "steamrollered" for a few days after each infusion. This is apparently common due, as my consultant so beautifully put it" to "B cells dying all over the place" :roll: . Oh, and for some reason I had really swollen feet and ankles due to fluid retention after the last couple of infusions but the nurse gave me a footstool to use and it was better the second time and eased after a week or so.

I missed out on my second cycle of infusions due to other health problems so it was nearly a year before I had my second lot. I know that it is definitely beginning to help me now though because I have been able to reduce my steroids and stop the anti-inflamms. The consultant and I feel that, because of the delay before my second infusion cycle, I probably pretty much "started again" so on that basis it will only have taken about 4 months for me to start seeing a positive effect which is much sooner than expected. The plan is therefore for me to have an "extra" set of infusions in a few months - and the jury is still out as to whether I will see any further improvements.

I don't know if any of my ramblings are helpful to you. But the final thing I would say is that, over the years, I have developed the approach that I would far rather have the chance to be as well as I can be NOW, than to miss out on that chance because of worries about future side effects which may not happen. And I comfort myself by remembering that, in the past when I have had problems with the meds, they have always gone completely when the offending drug has got out of my system.

Good luck - and please do keep us posted. There aren't many of us "Rituximabers" out there so the more the merrier I reckon

Tillyxxx

emmared

Im so glad Ive found this I get my first infusion on Wed and Im quite nervous!!!
How bad do people feel after the infusion?
I have 2 young girls so hubby is taking a few days off in case Im not feeling good.
Also have the steroids affected anyones weight? Ive lost quite a lot of weight & Im worrying I will stop loosing because of the steroids.

At the moment I am so achy so Im hoping this works but still a bit scared about it

arfaitis

I have been on rit for 5 years, two doses the first year, and once a year since.
I am in total remission, and I have had no side effects, but I must add we are not all the same, what suits me might not suit another.

tillytop

Thread bumped up for Kim.

Tillyx

arfaitis

Rit was due 6 weeks ago, I have been booked in again for the next infusion which will be 6 weeks away, that means I will have gone 15 months between doses.

stickywicket

Arfaitis, it's lovely to see you again. I have wondered how you were. What's been happening to you? I presume whatever it is has caused the delay in treatment.

dreamdaisy

Hello Arfaitis, long time no hear. I'm presuming the other way - things have been going so well you haven't needed it for a goodly spell. Which one of us is right? DD