Rituximab infusion on Monday

[madonbrew]

Hi, I come on here from time to time...I have got a rare diagnosis of IgG4 systemic disease. I've got ckd stage 3b&am 38. I also have pancreatitis, and get bad asthma,along with diabetes due to the pancreatitis.

Anyhow, on Monday I am having my first Rituximab infusion. ..it's a biologic drug. They are hoping it might save me a transplant in the future. At the moment my body attacks itself &is working it's way around organs.

I'm only the 2nd patient my consultant is trying this drug on for my particular disease.I'm a bit nervous as there can be some potentially biggie side affects.

Guess my Dr wouldn't consider it if the pros didn't outweigh the risks!!

[madonbrew]

Had the infusion &all ok so far.I had some stomach cramps last night&felt a little nauseous but am ok now. Next infusion 7th March.

[madonbrew in reply to madonbrew]

Have had a bit of a red rash on my face...a bit like when you first get out the shower&you look a bit pink. Hopefully that will be as bad as it gets!

[madonbrew in reply to madonbrew]

I've now had both my ritux infusions &am doing ok! !No horrible side affects as yet!! My eGFR has actually come up from 36% to 48!!! Never thought I'd see those numbers again! !

[Thereisnoplaceforus in reply to madonbrew]

I'm very happy that your number improved. How are you doing now?

I have recently been diagnosed with IgG4 related disease. I have severe swelling on my pancreas. Doctors have prescribed Prednisone. I have taken it for two weeks now but no improvement whatsoever. In fact I feel like I'm getting worst. I can not eat at all. Not one bite. It just stays in my stomach for hours. Nothing is moving inside. I also feel like something is affecting my right eye and brain as I feel my eyelid getting heavy and feel very uncomfortable in right side of the brain. Something is very wrong with my body. Out of answers as doctors are taking it very lightly and keep saying this shall resolve in few weeks to a month on this meds. On top of that we are having huge covid virus due to which I can't even go to hospital anymore if required for emergencies.. May God help us all.

[Thereisnoplaceforus in reply to madonbrew]

I have heard this is a maricle drug. It keeps the disease at bay without compromising the immune system like steroids. But steroids are cheaper alternative to keep the disease in remission. Have you had anymore infusions? Did they ever test your IgG4 levels?