LUPUS UK
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Ongoing post re Rituximab infusions

Hi everyone

Just a quick update following my first cycle of Rituximab infusions in December. As I said on my last post the 2 infusions went pretty well and I had no side affects apart from extreme tiredness on the days I had the infusions.

Well it is now 3 weeks since the last one and I am still feeling very, very tired (after 7.30pm I am usually to be found fast asleep on the sofa!) but apart from that no other problems. I am still getting a few aches and pains but nothing I cannot cope with at the moment (I think the steroids are the reason for that). I am still on 10mg of steroids so don't really know if the Rituximab is working yet. My Rheumy told me that I have to start decreasing the steroids by 1mg monthly but only after 6 weeks have passed since my last infusion, so that will be in another 3 weeks.

Will let you know how it goes!

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Hi and thanks for the update.

I’m sorry you’re still really tired. Are you more tired than before the infusions? Hopefully your doctor can replace the lowered steroid dose with something else.

I had DHEA doubled for tiredness when I saw my doctor in December, it has worked. I’m on a base of 5 pred and having infusions in a couple of weeks.

Cheers

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Thanks for your reply. Since getting this awful disease I have felt tired at times but nothing like I do now. The tiredness is a real pest, but if I am pain free I will put up with it. Funnily enough I seem to have the same thing every night with my sleep - I fall asleep for about an hour at about 7.00pm/7.30pm, then go to bed at around 11.00pm and wake at about 2.30am and cannot get back to sleep again, so usually I finish up getting up and going into the living room and reading.

But as I said if I am pain free I am more than happy to put up with the tiredness.

Keep your fingers crossed for me and good luck with your first infusion.

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🤞🏼🤞🏼🤞🏼

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Hi bakbre , I found tiredness a problem after rituximab, it also took a few infusions before found real benefit though my lymph nodes reduced very quickly. Were you finding that exhaustion was a problem before the transfusions? I ask for the transfusion to be given slowly as I find it easier to tolerate as had severe gastritis after first transfusion.

Do make sure that your bloods are checked regularly as my practice didn’t and were shocked when found my white cell count was extremely low which also made me v tired . Best wishes hope the rituximab makes a big difference 🌸🌸

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Thanks for your reply. Since getting this awful disease I have felt tired at times but nothing like I do now. The tiredness is a real pest, but if I am pain free I will put up with it. Funnily enough I seem to have the same thing every night with my sleep - I fall asleep for about an hour at about 7.00pm/7.30pm, then go to bed at around 11.00pm and wake at about 2.30am and cannot get back to sleep again, so usually I finish up getting up and going into the living room and reading.

I do have my bloods taken every 3 weeks at my GP's surgery and they are sent on to my Rheumy.

But as I said if I am pain free I am more than happy to put up with the tiredness.

Keep your fingers crossed for me!

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🤞🏻You will be pain free soon !

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Hi Bakbfe

I'm sure you will do fine reducing the steroids...prior to starting RTX.....just had 4th pair of infusions I lived on Depomedrine injections....& I haven't needed one since starting RTX.

I agree tiredness is a problem, but I try to pace myself & it is getting better........but I find the most annoying thing is going to bed exhausted, sleeping for 2/3 hours, then not being able to go back to sleep.

But I'll put up with that just to be pain free.

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Thanks for your reply. The infusion nurses told me that it can take up to 12 weeks to work and at the moment I am still getting a few aches and pains but not bad ones, although I am still on steroids.

If mine works like yours obviously does I will be delirious. I agree that the tiredness is a real pest, but like you if I am pain free I will put up with it. Funnily enough I seem to have the same thing as you with my sleep - I fall asleep for about an hour nearly every night at about 7.00pm/7.30pm, then go to bed at around 11.00pm and wake at about 2.30am and cannot get back to sleep again, so usually I finish up getting up and going into the living room and reading.

Keep your fingers crossed for me!

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Although I'm doing well on RTX I'm still keeping my fingers crossed. I tried so many meds I thought were "IT" only to have them go pear shaped.

I do find having a slower infusion...61/2 - 7hrs.....seems better for me. I did have one in 51/2 hrs, & although I. Didn't feel dreadful afterwards, I was a bit off.

I'm getting quite good at crossword puzzles at 3am!

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Very interested to read this as my consultant has just applied for funding for me to have rituximab in the next few weeks and I was worried about infusion reactions.

Have you found it’s made the fatigue much worse than before? I thought it would help with fatigue 😬 (but maybe takes a bit longer to work on some symptoms?)

Pleased it’s helped your joint pain and hope it continues to improve

X

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I have been pretty much tired ever since getting this disease although not that badly, but is it now worse since I had the first cycle of Rituximab. I had the second infusion on the 28th December and I was extremely tired for about 2 weeks but I now seem to be getting less tired daily, so perhaps it just takes time to get over it. I am still on steroids (prednisolone) so I am not sure if it is this which is helping the joint pain or the Rituximab - only time will tell!

I hope your consultant gets the funding and that it works for you - I will keep everything crossed for both of us! Wishing you lots of luck.

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