Rituximab again

[Maureenpearl]

Last Thursday I had my fourth of a two part course of Rituximab infusion along with oral Piriton and Paracetamol tablets. I started to sleep because of the effects of the the tablets.

During the infusion I felt very hot and had to have a fan to cool me but my temperature was normal.

I left the hospital in a daze and with a shocking headache diarrhoea and vomiting. The next day and days since the infusion I have been feeling like I have the flu and my body feels so weak and lethargic. I am always tired and sleeping, I now have a metallic taste in my mouth.

Does anyone else who have had this drug had any side affects? The last time I had this drug was a year ago and I didn't think it made any difference to me so the consultants didn't think I should have it again but they couldn't think of any other medication to give me so decided a month ago that I should try it again.

My diagnosis is Mixed connective tissue disorder, Lupus (SLE) with lung involvement (Pulmonary Fibrosis). along with all the other add ons.

[weathervane]

Hi maureen , im sorry you are feeling so poorly , was it as bad during your previous infusions . I felt poorly after my infusions, severe gastritis and exhaustion for over a week . My infusions are now slowed down and i have been able to cope better , also i up my omeprazol. The rheumy Nurse was also able to give me good advice. I hope you feel better soon and your next infusion goes smoothly 🌸🌸

[Maureenpearl in reply to weathervane]

Thank you weathervane for your kind words and concerns.

The first two infusions was a breeze, no I’ll feelings until the third one last year October and November but still not as bad as this one.

I will ask the nurse to slow it down next week. 💐💐

[weathervane in reply to Maureenpearl]

I hope that makes a difference for you . I have primary sjogrens and the rituximab has made a great improvement to my life . I will be sending you positive thoughts next week , please let us know how you get on . Xxx

[Wendy39]

Hello Maureen, I can't offer advice, as I've never had that treatment but wanted to say that I really hope this second treatment does make a difference for you. Fingers crossed. Best wishes. Wendy x

[Maverick77]

Hi Maureen, sorry to hear you are so poorly. I have just had my second infusion and also have metallic mouth. I blame it on the prednisilone. When I need a boost of prednisone I always get it but I can't do without prednisilone and hope the infusion means I can reduce it.

[Maureenpearl in reply to Maverick77]

I’m on 5mg of Prednisolone daily and the steroid infusion I’m given before the Rituximab gives me a appetite but this time I don’t really feel like eating much. It has also affected my mood (mood swings).

Praying it will make a big difference to your health. 💐🙏