Lupus / Rituximab Infusion and Stomach problems

[Haired]

Hi,

I had COVID Vaccine (no 5) on 10 of August and 10 days later caught COVID for 1st time and on 22 Sept had my 6 monthly Infusion.

I felt fairly awful while I had COVID cough, aches, stomach upset, very bad fatigue, loss of taste & smell etc.

I have had bad stomach bloating, cramps after eating and generally feel exhausted .

Just wondering if this sounds familiar to anyone or any thoughts.

I feel my Lupus /Sjogrens symptoms acting up since I had covid. ( could not take Paxlovid as on nocturnal epilepsy medication).

Many thanks.

[weathervane]

Hi Haired , i had covid the beginning of August, i couldn’t have the tablet antivirals so was given the infusion, i think it was sotrovimab . I don’t know if it helped but I didn’t have severe covid. It did take me 6-8 weeks to recover, i was very tired , had lingering cough and breathless . Im feeling good bit better now and im getting rituximab on Friday , i always get it at a slow rate as i have had gastritis after it in past , slow rate has helped.

It might be worth calling the rheumy nurse or gp for advice. I hope you start to feel better so and the rituximab kicks in properly, best wishes x

[Haired in reply to weathervane]

Hi Weathervane,

Thanks so much for your reply. It’s good to hear from someone in the same position and on the same medication. Yes have a lingering cough at night and breathless. I do feel breathless a lot on and off with lupus.

I live in Dublin so don’t have Rhumy nurse but might have a talk with my GP this week. That’s interesting what you mentioned about “slow rate of Rituximab Infusion . I looked back on my diary and see I had bad stomach for a few weeks after last infusion in March. My eyes feel so swollen along with being more photosensitive.

Again thank you it’s so good to communicate with someone who understands what your talking about. Have a good evening.

[weathervane in reply to Haired]

Fingers crossed your gp can help , I take lansoprazole and more recently gaviscon advance which really helps as well . Im in Belfast and luckily there is a rheumy nurse available. Hopefully things will settle and you feel better soon, take care xx

[Haired in reply to weathervane]

Thanks for coming back to me. I was looking with interest at your previous comment regarding your nails. My finger nails have started to split over the past few months. It did not dawn on me to mention it to the Rheumatologist when I was last with him.

Regarding my stomach I probably did not associate it with Lupus & Sjogrens as I had part of my bowl ( sigmoid colon ) removed in 2018. So had a lot of stomach problems leading up to that.

I am very medication Intolerant and in Nov 2020 had Liver problems due to 7 wks on Imuran. While in hospital they diagnosed gastritis and Duodenitis. My stomach feels a bit like that.

What symptoms did you have with Gastritis ?

Sorry for all the questions. X

[weathervane in reply to Haired]

i was in alot of burning pain and felt nauseous with gastritis . I also have diverticulitis with was nasty, i avoid garlic ( powdered is better) and to much onions which see to help . If i have a bout i eat toast and very plain food for a few days.

Im going to ask the rheumy about my nails on Friday, in fact im going to make a list about a few other issues. If I remember i will message you here if i get any answers ( also got brain fog ) xx

[Haired in reply to weathervane]

Your very kind . Thanks again. Marian x