Eye infection –Lupus -Rituximab

[wotshernameagain]

Eye infection –Lupus

This weekend I was fortunate to come down with an infection that has left me looking like I barely survived a round with Floyd Mayweather.

As I have found when I have a cold, flu or any kind of infection I was floored for the weekend which I expected

However, my worry is that I had Rituximab infusion in January (Even though it didn’t go to plan) and I am due to restart the treatment on Thursday.

I’m not sure If they will still let me have it if I rock up with an infection considering the whole point of the treatment is to lower my body's defenses.

Amy thoughts?

[Hidden]

Hi wotshernameagain,

I'd usually say hope your feeling well, but given your infection issues, I'll just say hope you're soon feeling better!

I've not had Rituximab treatment so far for several reasons, but mainly because infections are such a problem for me on my Prednisolone, MMF and Imuran regime (I got as bad as Sepis last year), that I'm wary of the even stronger treatments so am keeping that as a back-up treatment at least for now. I also only have private care and it's a real expense!

However, I have discussed this at length with my Professor (Hughes) and as I understand it, they will usually weigh up the risks and benefits each time before proceeding. Infections aside has there been any improvement Lupus-wise with it? I hope so and whatever happens, it's the best decision for you. Keep us posted!

Regards,

Kate.

[wotshernameagain in reply to Hidden]

Hi Kate

I had A Rituximab infusion a few years ago and I did notice an overall improvement that which lasted around six months, however, when I repeated the treatment a few months ago I had quite a bad reaction and it had to be stopped . we are now giving the treatment a second try at a lower does over a longer time period fingers crossed it works as I can't bear for something else to go wrong

[Maureenpearl]

Hi wotshernameagain,

Iv'e had three courses of Rituximab from 2015 to November 2016 and before each infusion they usually check your blood and urine for any infection and you won't be given the infusion if there is any infection present in your body. You should also let them know you have not been well.

It took three years for me to get the funding for the Rituximab but I don't think I will be having anymore because since the last course of infusions I have not seen any improvements instead I have just been having one infection and cold/virus after the other.

It was such a disappointed as the last course I think it was Jan/Feb16 I saw a vast improvement. I felt uplifted, my head was clear, I went out doing voluntary work. My lung fibrosis remained the same (I use ambulatory oxygen) but I didn't let that hold me back because I had so much energy and no fatigue.

Did you have the infusion in January? I was told it was given every six months or more. Hope it goes well for you on Thursday.🙏🏽💐