Rituximab

[Jaq1971]

hey all just thought I would update all on the Rituximab infusion that I had on Tuesday after lots of fear and apprehension it really wasn’t that bad although my veins kept pushing out the cannula and I did have to stop for 1 hr due to itchy tounge and ears ? Yesterday I did spend most of the day in bed but on the whole it really was ok 👌 next one in two weeks so we will see how that goes here is hoping it helps to settle my symptoms down a little bit

[OldTed60]

Hi Jaq, I was about to drag myself out of morning stupor to post after my second Rituximab infusion on Wednesday but you got there first!🩵😅 I’m so pleased it went reasonably well but hope you’ll maybe take some more antihistamine and ask them to run it at same slow speed for your next one.

I’m only two weeks ahead of you so here’s my experience in case it helps. I stayed over on the ward on Wednesday night having had a mild delayed allergic reaction after first infusion 2 weeks earlier. This was despite piriton as pre med and the night before and afterwards so a bit of a worry in my case - hence being kept in overnight. Apparently if the allergy is delayed then it can be much more serious with subsequent infusions.

But very fortunately this time I didn’t have any allergic reaction, delayed or otherwise. I have a portacth for my monthly Iloprost so am really lucky to be able to avoid the cannula issues now. It was hellish 3 months ago on the colorectal ward getting stoma surgery as they weren’t portacth trained so I had bruised and burst veins all over the place and still have a hard thick scar on back of left hand from one of these! This vein problem actually put me off trying Rituximab when my rheumy first suggested it a few years ago.

Anyway, like you, I have had a few days sleeping off the Rituximab fatigue hangover, slightly more intense this time than two weeks ago. However when I got out of hospital on Thursday morning I power walked with the dogs for over 10k steps in park near hospital and was so energised from the steroid infusion all day that I felt invincible - the relief at tolerating it was so great as well. I then crashed yesterday and have since felt a bit low with a lingering headache.

Not relevant to your experience, but my Rituximab day on Wednesday was rather awful this time, because I was worrying so much about how my stoma would behave overnight on a ward with a shared toilet, that I took a Linaclotide when the infusion ward got quiet in the early afternoon. I then had to haul myself out of an old recliner every half hour, unplug my heavy old drip stand and get to the toilet and finally change my bag while the Rituximab was bleeping loudly as needed turning up! Luckily the nurses know me very well and know that I now have a stoma so didn’t comment - just waited patiently for me. I’m so paranoid about hygiene aspect of stoma and portacth now having had a portacath infection lead to sepsis last year (caused by the hospital radiologist apparently!) - so I literally cleaned the whole toilet, the floor and wiped the infusion line down with anti bac each time just in case!! So it’s not surprising that I’ve gone into catch up on sleep mode now. I’m quite sure I’ve left both ward toilets cleaner than I’ve ever found them!!

Recover well please and best of luck for next one in ten days time - I’m sure it will go fine! 🤞🏻xx

[Jaq1971 in reply to OldTed60]

Thanks old yes yes last night I did crash and burn I only had half the dose of steroids as concerned about my kidneys but blimey felt like I was back in the 80s at a free party lol today I’m in bed and allowing my body to rest keep me posted on how things move forwards for you I have my first iloplast in November so fingers crossed xxx

[OldTed60 in reply to Jaq1971]

Free party in the 80s sums it up so well!! Although I was never a party lass in my youth, but perhaps my time has now come?! If Rituximab turns out to be our wonder treatment then perhaps we shall meet up and have our very own rave to celebrate?!

If you’re going to get iloprost too then it might be worth asking your consultant about getting a portacth - it’s been a total game changer for me - my bestie!! Take care Jaq x

[Jaq1971 in reply to OldTed60]

That sounds like a plan and I will definitely speak to my rheumatologist about this have a wonderful weekend ❤️

[FelixFelicis]

stay strong! Results will come soon

[Clangerscat]

Glad it went okay. Thanks for the update. Hope it improves things for you soon.

[Lupiknits]

I’m glad it went well for you! I was very nervous but had an extra attentive nurse reassure me through the process. I didn’t spend the next day in bed, but felt very very heavy: had to describe but I think feeling like I was made of lead sums it up. By the way, it’s definitely made a difference and I get my 12 week checkup this month.