Rituximab - any experience would be appreciated

scattered

Hi,

I don't often post here, but I read everyday. I'm in need of some advice. I have severe RA which has flared up in a major way. My rheumatology nurse wants me to change meds to rituximab to see if this will quell the flare and get me back on the right path again. The only problem with this plan is that rituximab is one of the few drugs that I'm genuinely scared of. I would love to know about the how the medication is working for other people, what happens during an infusion and what side-effects there are from it. I'm currently taking Humira, MTX, hydroxychloroquine and prednisolone. I was put back on pred to try and curtail this flare, but thus far that hasn't happened.

Thank you.

Scat.

tillytop

Hello Scattered

So sorry you are struggling so much with your RA at the moment.

I have just had my first two Rituximab infusions and I will post back a bit later with some information for you which might help to allay your fears a bit.

Love Tilly xxx

rugbygirl

Sorry to hear that you are going through this. I am unable to offer you advice but I want to say I hope things work out for you. I am sure that people here will be able to offer you more advice and enable you to feel more at ease with the new drug you are being offered

ChrisWills

Scat I think I can help . I have now been on Rituximab for around three years taking it at a 6 month cycle . At first I had little reaction but after persisting my arthritis is now under control . I've had Arthritis now for over 23 years so I understand your position.

Rituximab takes a while or the infusion to complete .I arrive at the hospital around 9.00 and leave at around 4.30 . The pre-med is important and depending on your type you will need careful monitoring during the infusion. I find the weekend after my infusion on a Friday quite painful so don't plan anything and keep to your bed ,possibly for a couple of days . The second session , you have two infusions close together at a two week interval ,will be fine but again for me during the weekend I feel a bit rough. My verdict is this is a brillaint drug. My blood is stable and still looking good after three years and you should try it .

Best of Luck Chris

scattered

Thank you all so much for replying. It really helps to hear from others taking the med, and from people just wishing me well. It means a lot.

Chris - it's good to hear that you're doing so well on rituximab. Thanks for the advice about the days after the infusion.

Tilly - I have read your thread about the infusion but anyhting else you could tell me would be most appreciated.

dreamdaisy

I don't know much about rituximab (but since when has not knowing much about anything stopped me from putting my oar in? ) but I do know it works in a different way to the other anti TNFs. One part of that difference is the length of time it takes: two infusions close together, then nothing for six months - and the fact that one may not notice any difference in that time is disconcerting. I know someone else on here tried it, but she doesn't post very often now - possibly because it helped? When people are doing well they tend to go, which is understandable.

I too am on humira and have flared throughout. Only the steroids help that which is why I am cutting those out - take a med that helps? Honestly, DD, what are you like? :roll:

It's a difficult time for you scattered, I am so sorry to read your post. I have always found your knowledge of the meds very helpful to me in the past and I sincerely hope things improve for you soon. DD

tillytop

Hello again Scattered.

First, just to say that I too was terrified of Rituximab, so you are not alone.

With Rituximab you have two infusions, two weeks apart and, at my hospital they repeat the process after six months and as needed after that. They won’t do it any more often than every six months but for some people I understand it can be eight months or more before they need to have it again.

You ask what happens when you have the infusion and my experience was as follows:

Before the Rituximab infusion was started, I was given an IV antihistamine injection, a steroid infusion, a saline infusion to flush the steroid through the drip line and some paracetamol. These are to minimise any possible reactions whilst the Rituximab was being given. Then the Rituximab infusion was started, very slowly at first and the rate was increased every 30 mins, provided I was feeling fine and that my pulse, BP, temp and oxygen levels were ok. Once the maximum rate had been reached, it was just a case of sitting it out and waiting for it to finish. I was then given another saline infusion to flush the last of the Rituximab through the drip and, because of my history of drug reactions I was given another IV antihistamine injection. They were concerned about my high BP – it was sky high when I arrived and I am sure nerves played a part – but it went down a bit during the infusion rather than up which was good. Apart from being a bit “woozy” a couple of times (possibly due to the antihistamine) and having a very brief period of nausea I was fine.

The process for the second infusion was the same, only this time because I had no problems with the first one, the rate of infusion and the rate of increase were quicker than before. There was some concern again about my BP which had been high when I arrived and was going up, rather than down (apparently either can happen during the infusion) so they decided not to increase the rate any further but again, other than that I was fine again.

I have to say that I was brilliantly looked after throughout and was monitored very carefully to check that I was ok.

I was at the hospital for about 8 hours each time.

I had been warned that I would probably feel rough afterwards but that wasn’t the case. I couldn’t stay awake when I got home which I think was due to the antihistamine and I was really tired the next day but other than that I was fine. I thought that perhaps the second infusion might have more of an effect but again, no problems at all.

As well as preventing a reaction, the steroid infusions have done wonders for my joints and I am still feeling the benefit more than a week after the second Rituximab infusion. The down side of that is that steroids at that dose really do seem to “mess with my head” and I have been really, really, miserable - so not making the best of the total lack of joint pain. Seems daft, I know, to be wishing they would hurry up and wear off, but I do.

As to when and whether the Rituximab will work – well the nurse at the clinic told me that it is not fast acting and whilst I might start to notice a difference after three months, not to worry if not because it can, apparently take up to 6 months to take full effect.

Given that things are so difficult for you at the moment, it might be worth considering Rituximab. Just think, if it works for you, it’s only twice a year – possibly less and, in my book, that beats injecting Humira every couple of weeks!

I hope that this is helpful Scattered. If you want to chat more about this, or have any other questions you think I can help with, please do feel free to pm me.

Thinking of you.

Love Tilly xxx

tillytop

Hello Chris and welcome to the forum.

I am really pleased the Rituximab is working well for you and, as a Rituximab newbie, can I ask how long it was before it started to work for you?

Thanks,

Tilly xxx

scattered

Tilly - thank you for such a comprehensive response. It is very helpful and I think you've covered most of my questions. It's reassuring to speak to others who are on the drug. Hopefully my fear will abate a little now.

DD - Thank you for posting. I know things aren't easy for you at the moment and I appreciate you taking the time to post. I had come off the steroids completely and then Ihad this flare and they put me straight back on them. I wasn't terribly impressed. My rheumaologist thinks the Humira has failed - apparently it is known to do that. It's a shame because I had quite a good response to it. It was neever enough on it's own but in combo's with other drugs it seemed to keep thing stable for about a year. This flare has hit me hard, physically and emotionally.

Sorry, I would write more but my hands are bad atm. Thank you once again.

dreamdaisy

Oh dear, scattered, I am sorry to read that and I hope things ease soon. I think all the anti TNFs fail, they seem not to be long-term drugs - even if one is on them for a good few years the breakdown of effectiveness eventually arrives. I think I have lasted as long as I have with the humira as it being supported by the injected meth but it hasn't done anything like what I hoped it would or what I was promised it would.

I remember my GP at the time that the inflixi failed saying that that med was based on mouse protein but that I am based on cat protein. I think he's right! Miaow! Take care and if you go on the rituximab (mab = mabine = mouse protein) that your inner cat keeps quiet for a good long while. DD

ChrisWills

Tilly,
Rituximab took over a year to kick in and to bo honest I had given up on it. Once things started to work and I'm sorry i wasn't keeping a dairy all was very well indeed . If I have a problem it was the sustained use of methtrixate supporting the Rituximab which over time started to effect my breathing . I've now changed to leflunomide and got the steroids down to 2.5 mg . In short Rituximab is excellent. The doctors keep a very close eye on you and for me the loss of a couple of weekends is a small price to pay for a pain free life.
I should add I have not had an infusion for over 8 months now and counting .I expect to have one soon but all is under control .

Best of luck everyone I've had my condition for over 20 years and this is the first time I've thought of feeding back.
Cheers Chris

tillytop

Thanks Chris for the info. Yikes! A year sounds a long time to wait to know if it's going to work for me. So glad it is working for you though alongside the Leflunomide and that you have managed to reduce your steroids so far! Although I was warned that I would feel rough after the infusions, I didn't which is great but now I find myself worrying that, because of that, it isn't going to work. :roll: Really hope it continues to work for you Chris.

Thanks again.

Tilly xxx