I am due to start Rituximab in January but really worried about some of the side effects!

[B2403]

I know that there are side effects to everything that we have to take but some of the side effects to these infusions seem much more severe! Has anyone been using this as a long-term treatment?

[Sailaway]

I'm not on long term rituximab, but I wondered if my experience with short-term side effects might help?

It can be a good drug if you can take it, so I decided to start it when I was offered it. Unfortunately I did have a reaction, but because I was in hospital it was dealt with brilliantly immediately. The infusion unit staff were by my side the moment I noticed something odd, then a couple of doctors also assessed me (one junior, one senior) within a couple of minutes. I received treatment for the reaction, and then stayed in the unit until they were happy that I was well and I was allowed home. I felt safe all the way through, and was grateful for the opportunity to at least give it a try. I'm fed up I didn't get chance to try it longer!

[B2403 in reply to Sailaway]

Thank you - that is good to know, I've had RA two years now and still trying to find a medication that will work! I just feel really worried about the side effects such as PML - progressive multifocal leukoencephalopathy - because when I spoke to my rheumy nurse she told me 3 people in just 5 years had been diagnosed with it who had RA and were being treated with the Rituximab. It just seemed a lot to me in the short time the drug has been used. I am waiting to hear back from the nurses about this but if I do go ahead with it your experience will be really very helpful so thank you

[Tillytop in reply to B2403]

Hello,

I do understand your worries about Rituximab and I too was nervous when I started it about 2 and half years ago. I have had 3 infusion cycles now and have had no bad side effects and, like Sailaway, I have always been very well looked after at the hospital during the infusions. I know the potential side effects make scary reading - but I think the side effects like the one you mentioned are very uncommon. I assume the nurse meant 3 people "anywhere" rather than 3 people just at your hospital? And when you think about how many people worldwide must be on Rituximab that is actually a very small percentage I think.

My experience of Rituximab so far has been good and, although it can be very slow to start working (I was told up to 9 months) it has certainly started working well for me sooner than that. The only "downsides" for me are that I usually feel very rough for a couple of weeks after each infusion (absolutely wiped out and generally grotty) and that I don't do well with the steroid infusions which are given alongside the Rituximab each time. But once the initial effects wear off, I'm absolutely fine, with no apparent side effects at all. And the big "plus" is that, for me, it works well for about a year each time, so I can go a long time between infusions.

I've had RA for 18 years and still find starting any new drug quite frightening, but my approach these days is that I would rather be as well as I can "now" than lose that opportunity on the basis of a rare side effect which might never happen. And thinking that helps me to cope with "new drug nerves".

If you do go for the Rituximab, I really hope it works well for you.

Tillyx

[B2403 in reply to Tillytop]

Thank you Tilly, that is really helpful - I know I think it's just like you said with the new drug nerves natural I'm sure! It's really good to hear that it works so well for you though I think I will - I'm certainly down to start it so fingers crossed it goes okay! x

[Tillytop in reply to B2403]

Hello again, and thanks! Really good luck and it would be lovely to know how it goes for you because there don't seem to be many of us "Rituximabers" on HU.

Tillyx

[marief]

Hi

I was on Rituximab for 5 years. My problem was neutropenia and after my last (6th) infusion I developed a rash all over the next day.

But none of that put me off until I read about PML recently ! So I decided to hold fire. But I'm struggling big time. On 15 mg of prednisolone and I hate it!

Rheumy nurse suggested abatacept but that's linked to cancer apparantly. ..bottom line all of the drugs have nasty potential side effects.

I am going Tuesday. .but my gut feeling is Rituximab is the best way forward for me.

Good luck

[Hidden]

Hi all,

I'm also a 'Rituximaby'...I was worried about it and also had an infusion reaction on my 2 round of infusions. A year and a half on I can honestly say it's the best thing since sliced bread!! After failing on so many treatments I was pretty fed up but this has given me my life back. Good luck, I find it best to ignore the potential side effects and look at the very positive impact x