Rituximab experience?

[Kafkaontheshore]

Hi all. I have had large vessel vasculitis for over three years which, despite several different treatments, is proving difficult to control. An FDG PET CT scan last November showed some inflammation in all areas of my aorta still. I have just started Rituximab infusions. This has made me feel even more fatigued and weak. Just hope it helps in the longer term. Does anyone have experience of this treatment? If so did you tolerate it ok? How did things work out for you? Thanks in advance 😀

[Nadine99]

If you have FB, go and join the Vasculitis support group. You can then do a search on Rituximab and loads of info will come up. Have you also looked at the Vasculitis.org.uk site?

[Kafkaontheshore in reply to Nadine99]

Thank you I will do this. Good idea 👍

[Hidden in reply to Kafkaontheshore]

I gave up FB years ago but when I was on there, I joined the Wegeners group. There were and may still be several "Know it Alls" on there who have a tendency to bully.

[Nadine99 in reply to Hidden]

You're probably (hopefully) talking about a different FB page. Try Vasculitis Support, a very helpful friendly knowledge group

[Hidden]

Here is another link you can look at for information.

wegeners-granulomatosis.com...

[Kafkaontheshore in reply to Hidden]

Thanks. Much appreciated

[Nadine99 in reply to Kafkaontheshore]

Not that one see my other answer

[Kafkaontheshore in reply to Nadine99]

Yep joined that one thanks. Just waiting for approval 👍

[Nadine99 in reply to Kafkaontheshore]

see you on there

[Grizzly-bear]

I get fatigued in the week or two after rituximab but it evens out and then I usually feel normal again. For me I think it’s the methylprednisolone and then I get put on a reducing dose of Prednisolone again after I’ve had rituximab for a few weeks and that’s always a little discombobulating.

[Kafkaontheshore in reply to Grizzly-bear]

Thanks for this. Hopefully I’ll feel better a little later then. Second infusion Tuesday

[Investigator1]

Hi Kafkaontheshore. Yes been on it 3 years, for me tiredness and fatigue kicks in like Grizzly after about 2 weeks, lasts for a couple of weeks than 8-10 weeks same again but it seems to affect my sodium levels and anyone who has suffered low sodium it’s one of the worst feelings ever then I have about 3/months of relative normality. Nick.

[Kafkaontheshore in reply to Investigator1]

Thanks Nick. Good to know it’s not just me. Many people seem to breeze through treatment with it

[Electra1]

Hello Kafkaonthrshore,I was one of the first patients to have rituximab in the UK, before it was licenced for treatment of vasculitis. I have GPA and my disease was uncontrolled by any of the drugs I'd tried. I had asceptic meningitis and was very unwell. I tolerated the drug , Rituximab, well and it was amazing when I gradually got better over about 6 months, although I had infusions for longer. The outcomes for treatment with Rituximab for vasculitis at that stage weren't fully known, but Rituximab was my last resort. It made me tired but I was in my 40's so I rested. I went back to work and started to catch every bug there was. I began to be hospitalised for difficult to treat pneumonia and lung infections. The rituxumab irradiated the b cells of my immune system, but they, unexpectedly, didn't bounce back which is more usual. The b cells are memory cells which recognise viruses, such as things we've had before or had vaccines for. I now take an infusion of an immune replacement drug weekly. I'm not saying this to scare you, quite the opposite. If I had to choose again, I would still have chosen Rituximab. It is a life saver and consultans have learnt a great deal from those early days. I've been reasonably healthy over the last 10 years or so and my reflection would say relax into it. Be informed, keep a journal with dates and a line or two to remind yourself how far you've come. My philosophy is that my glass is half full, rather than half empty. Rest when you need to, celebrate when you don't. Good luck, my fellow Rituximaber.

[Kafkaontheshore in reply to Electra1]

Hi Electra1. Thanks so much. Very hopeful and kind words. It is so valuable and touching to hear from someone on a similar journey. I was hoping to feel GREAT but of course these things take time don’t they. Hopefully I will further down the line. Very encouraging thanks 😀

[Pumpsydaisy]

Hello, I’ve been having Rituximab infusions every 6 months for 2 years now, they give me a large amount of steroids first, and I think it’s the steroids that give me a boost of energy for at least a month after the infusions. Over time I have improved, however the journey has been slow. Hope that helps

[Kafkaontheshore in reply to Pumpsydaisy]

Thank you for this. Yes I’m getting the idea I need to be patient. No quick fixes!!

[yogarita1955]

I thought ritixamab was brilliant it made me feel normal again after feeling horrible for a long time a year at least 3 years later after 2 infusions I'm good 6 steroids a day I can do most things walk 4 to 5 miles just not every day but every other plenty of sleep and water your body will tell you x

[Kafkaontheshore in reply to yogarita1955]

That’s good news thanks for sharing. 😀👍

[Angels54]

Hi , I had this treatment and have to say it didn’t agree with me , hope you pick up soon .

[Kafkaontheshore in reply to Angels54]

Thank you. Can you tell me in what way it didn’t agree with you? I feel really fatigued but that is on a background of fatigue as my main symptom of large vessel vasculitis