Flu like symptoms

[Vonnie10]

Hi just need some sort of help really I had rituximab my first ever infusion my last one was about three weeks ago, I feel like I’ve got flu like symptoms but I never get the flu my imflamation in my wrist as goneworst I’m sleeping loads but always tired,I feel so unwell zero energy , I should say I’ve been living on steroid injection for sometime due to meds not suiting me, do I need a steroid injection ? My last injection was about 9 weeks ago I usually have one every 6/8 weeks started Rtx just recently, Is the Rtx to blame ? Is it not working ? This is truly the worst I’ve felt in 3 years since I was diagnosed , I know it can take upto 12 weeks to work but this is beyond a joke I feel horrific any advice would be much appreciated sorry this post is so depressing hate this disease with a passion .

[Hidden]

I know nothing about rituximab Vonnie, hopefully someone else will, but that doesn’t sound good. Can you put what you’ve said in email to advice line (always got better results if in writing) or ring them? Really hope you get some answers/relief soon; take care xxx

[NeonkittyUK]

Rituximab itself and the antihistamine they give you prior to the infusion will be making you feel tired. I was zonked out after my first couple of infusions but by the third duo I was recovering much quicker. Rituximab as you say isn't normally a fast worker like some of the biologics can be. It takes a couple of months on average I was told but I felt it working after 4-5 weeks. I have had excellent mobility since starting Rtx 4 years ago. No new inflammation and very low ESR and zero CRP. Keep a note of your side effects/how you feel and if you think anything is really feeling out of sorts then phone your rheumy nurse/department a call for reassurance. If they give you another general steroid injection at this time it may confuse what is working .. The hydrocortisone or Rtx, but if you have a swollen inflamed wrist they may want to inject that with steroid. You will feel very tired for a while as the B cells in your body will be being depleted by the Rtx as it destroys the bad RA proteins on the B cells. After about a month you will pick up quite a lot I bet. I did. Don't try do too much if you feel exhausted and pace yourself. I had to sleep a lot and like you I had been on a lot of steroid injections and very tired from RA that was uncontrolled and flaring. I have always been told to try not mix too much with people for the first month as you are vulnerable to getting viruses etc when your resistance is low. I've found I pick up colds etc easier but then I seem to know a lot of people who cough all over me on a frequent basis. Yuk. Hope you soon feel better and Rtx works well for you. Good luck!

[AgedCrone]

Hi Vonnie.....Sometimes RTX kills off (lyses /?lyces) the cells too fast & this does make you feel bad for a while...it happened to me once when I first started with the infusions. Like you I had flu like symptoms & felt generally "off". I spoke to my Rheumy & he explained what had probably happened .....he said there is no telling if it will happen but not to worry.....he was right .....I think it took 3/4 weeks to work through it.....& it's been plain sailing ever since.

I would have a quick word with your Rheumy nurse to check if that may be what has happened to you.

I have been on Rtx since 2016, & it is controlling my RA really well, although I am more tired on it than any previous drugs.....but I can deal with that more than all the symptoms I had .......I have found the tiredness is less of a problem as time goes by ...but it is still there.

I haven't needed any Depo injections since I started RTX.

Hang on in there, let's hope it's the storm before the calm!!!

[juneann]

I'm on my third year of RTX and have done very well very quickly without much issue. Last ear I did react almost instantly with a full on head cold which was at reaction during the infusion by dealt with. This year not such a good effort effect and took around 12 weeks. Not as effective as was.

[weathervane]

Hi Vonnie, i had flu like symptoms and gastritis after first rituximab infusion, they lasted for a week. I haven’t had that since though i now get infusion at a slow rate because of the gastritis. Rituximab has really helped me , i hope you get the same results, feel better soon 🌸🌸🌸

[Vonnie10]

Thanks everyone this is reassurance to me that others have had similar experience, hopefully it passes soon yous are all stars 🌟 .

[Jackie1947]

Sorry you are having difficulties. I've been having Retux annually for 3 years now. I could only have one round because I had a reaction to the pre and post steroids. I was told its not the Retux that caused the problem. You would have had steroids too I guess so a steroid injection wouldn't be given. The treatment as a whole can make you feel tired for a while and it takes people differently. Give it time and all should be good

[Grembold]

I have had rituximab during two courses of treatment for CLL, and although I had no flu like symptoms on either course, on both of them the first infusion resulted in nausea; anti nausea pills halted any further such problem.

I hope your flu like problem has been resolved.

[masonman]

Hi Vonnie,

It was only yesterday that I started my third round of treatment with Rituximab, and was firstly given a 100mg of Prednisolone along with an antihistamine, by infusion, followed by the Rituximab.

From previous experience I can say that I felt worse for a couple of weeks and then started to feel the benefits of the drug.

I think that the combination of these powerful medications are bound to upset us in the early days until we get used to having it in our system. This biologic drug has really worked for me and I feel that it's worth the initial upset.

I hope that you also will benefit as did I.

The Rheumatology team that look after me in St Annes are wonderful and provide a helpline if I need to contact them, I hope you too have this at your clinic.

Best regards MM