Rituximab after effects

[cathie]

This is about my fifth cycle of Rituximab and so far its been fine, although I have felt tired afterwards. This time it was two months later than the normal six months. I had the first of the two three days ago and am still feeling very tired but also have nausea. Has anyone else had this experience especially after a very long gap? I'm trying to rest and eat in moderation, but am interested to know what if anything others have done. I dont think its bad enough to stop the next infusion in 2 weeks, I'll probably tell them though just to watch out for me.

[Lolabridge]

Hi Cathie

I'm sorry to hear you're feeling nauseous and tired after your Rituximab infusion. As you've not felt nauseous after previous cycles do you think there's any chance you may have picked up a virus or infection? There are lots going around at the moment. I've not had such a reaction yet but I've only just had my second. Hope it turns out to be insignificant for you so you can continue on your drug.

[cathie in reply to Lolabridge]

Thanks, so do I! I'll be having a blood test Monday week so if anything's still going on I expect it'll show up. It has been really good so far.

[AgedCrone]

I’m about due to have my eighth set of infusions and I do find after every infusion I am getting more tired-but then I’m also getting older. I’m 70+ and I seem to be able to keep up with my peers most of the time, so as long as I rest when I feel really tired...life is good.

I do have the odd attack of nausea-but I go on a bland diet and to be perfectly honest I suck it up .....because after 20 years I’m feeling the best I ever have RA wise.....not much pain or swollen joints... So I reckon feeling tired and having the odd sick feeling is a price worth paying.

I know the Rtx is working because after my infusion last time,I tried to go from 6 to 9 month intervals and after seven months I flared so as I say I’m sucking it up and being grateful for what I’ve got.

Obviously if I was nauseous all the time and felt really dreadful I would have a conversation with my rheumatologist ....but I saw him last month and he agrees that I am dealing with it in a way, which for me , is the way to go - my blood tests are good & he’s happy ...so I’m staying with Rtx.

Of course perfection would be feeling 100% all the time and hopefully that will happen one day but I’m not holding my breath.......I am just satisfied with how I feel most days.

[cathie in reply to AgedCrone]

I'm glad its working for you - as for me. Drinking mint tea to stave off pangs of nausea. Lets hope it clears up

[AgedCrone in reply to cathie]

I drink ginger & lemon tea....but tbh I don’t eat that much when I’m feeling queasy......& things usually settle,down after the second infusion.

Of course I’m lucky I don’t have to pull myself together and go to work ...I think not having that hanging over me really helps.

[cathie in reply to AgedCrone]

Thanks. I might send in a urine sample to the surgery tomorrow just to check its not an infection - better dealt with quickly. And yes, ginger is good.

[weathervane]

Hi cathie , ive started rituximab 3 years ago, im always tired for a few days afterwards and can feel nauseous, the gp did give me tablets to put under my tongue which helped. The first infusion is usually the worst, I recover quicker after the second. Look after yourself and if you are worried about an infection do contact your immediately or phone your rheumy nurse.

Best wishes 🌸🌸

[cathie]

Thanks I’ll send my partner to the surgery first Thing with a sample!

[Pulfs]

I'm usually tired after infusion but this time round after the 1st felt quite ill headache,,very tired and sick,was in bed for 2days. Had 2nd on Friday and just felt tired. Not had a reaction like this in 7yrs of infusions. I'm now on biosimily retuximab hope this isn't the reason as been doing well on retuximab and hopefully it was a one off. Hope you feel better soon xx

[cathie in reply to Pulfs]

I've not had a reaction like this either. I was given Truxima biosimilar. I'm seeing the practice nurse with a urine sample in an hours time. When did you start the biosimilar? I'm wondering if its that.

[AcerGriseum in reply to cathie]

Hi cathie , I started rituximab 3 years ago, I’m always tired for a few days afterwards. However this time I felt dizzy and had awful brain fog ! They always give me steroids and antihistamines before. The last 2 times they have given me Truxima biosimilar and I have found I don’t feel the same benefits.

[Pulfs]

This is my 2nd round . I've noticed also I have to ask for slow infusion as it was making my throat very sore. As I said hopefully just a one off.x

[cathie]

I'm up to second round in just over a week. Slow infusion is a good idea. I hope you're OK. My most recent one was 2 months late, so I'm wondering if that's a factor too.

[cathie]

For people kind enough to be interested in this episode, I saw the specialist nurse at the GPs this morning and she tested my urine sample. Could find nothing to suggest an infection, but she's sent it off to be tested further. She said my symptoms were significantly different from a UTI (copious peeing and no pain). So its probably down to Rituximab and I'm taking things easy.

[Joybells1]

Hi Cathie,

So sorry to hear that you are feeling nauseous , tired and unwell after your last infusion of Rituximab, can I ask, was it replaced with bio similar Truxima? as I also had a v bad reaction to this ,my first infusion last month, still suffering with sweats, headaches, nausea and resulting flare. I have never had a Rituximab infusion to compare, but was so hopeful this would be my wonder drug. Wishing you well.

[cathie in reply to Joybells1]

Yes it was Truxima. I think I've had this before, my response (rather than reaction) might have been because of the longer than usual gap. I'm pretty sure that it wasn't an infection although the practice nurse has sent it away for more tests. This is the 5th day since the infusion and I'm not feeling quite so nauseous. I'm eating very simply and making sure I drink a lot (to replace the copious peeing). It has worked very well for me so far, I hope it does for you too.

[Joybells1]

Aww thanks, off to see my consultant tomorrow, fingers crossed she might have some answers. Good to hear your nausea subsiding, onwards and upwards for us all .

[cathie in reply to Joybells1]

did you have the second infusion?

[Joybells1]

Yes, had second infusion on a Tuesday 2 weeks after first one, ended up in heart hospital two days later ,with suspected heart attack (thankfully not)

[cathie]

My goodness, I'm glad it wasn't for you! I hope you'll have a good few months now.

[Joybells1]

Thanks Cathie, hope all goes well for you too .

[Paisley58]

Hi Cathie going through my third ritux infusion right now. The first time was hell but after a week I was fine. Second time i was fine just extremely tired. I had the first part last week thursday, friday I was like a zombie, saturday I felt tired, brain fog and nauseous which didn't stop all day by Sunday morning I was vomiting and I felt like crap. However, since Tuesday I feel fantastic, so I put it down to one off but I will be telling them when I go back to the PUI unit on Thursday. I hope the teas help to settle your stomach, and I think you should let them know just in case there is something more sinister going on. Best of wishes.

[cathie in reply to Paisley58]

Sorry I should have said I hope your infusion goes better and that you benefit from it. I drank a lot more than usual today I dont know if that will make a difference. And eating little will help my steroid blood sugars.

[cathie]

I had a urine sample and blood tests. All clear, I had my second one today and was very careful what I ate to keep my blood sugars down. They give me puriton and steroids before the Rituximab. So far I'm keeping them low, so fingers crossed.