Rituximab Infusion to treat Scleroderma/IPF

[SMS2006]

Hi. Has anyone had Rituximab Infusions to treat Scleroderma/IPF? Did you feel OK after each infusion?

[Maureenpearl]

I have just been given the funding to have Rituximab (after waiting about two years). I have Lupus SLE with Pulmonary Fibrosis (the lupus has damaged my lungs). I will be having the first infusion in May providing I don't have any infections.

I am right now just getting over third bout of flu, which has been awful with fainting, chest infection and vomiting.

[SMS2006 in reply to Maureenpearl]

Sorry to hear you haven't been well. I hope the infusions help x

[Maureenpearl in reply to SMS2006]

Thanks, I'm expecting a miracle after waiting for so long to have this drug. I'm on ambulatory oxygen, so I'm hoping I won't have to use it to get dress and undress.

I just spoke to someone who has Scleraderma and she was given Rituximab a few months ago but she hasn't seen any improvements.

Hope you will be able to get the right drug that will improve your health. xx

[SMS2006]

Fingers crossed for both of us. I had cyclophosphamide last winter and it really helped but my lung function has deterioated again. Luckily I am not on oxygen yet. I just know my limits of what I can manage. Do you mind me asking what your lung function is? I have 45% which I know is alot higher than lots of other people on here x

[Maureenpearl]

I don't know what my lung function is as I try not to know these things I would just worry. The last one I had I know my lung function had deteriorated but I put it to the back of my mind.

I had Cyclophosphamide in 2011 and again 2012 but my breathing only improved for a few months and the cyclophosphamide was awful when it was been administered.

All the best my prayers are on going for you. My christian faith has kept me sane and strong. xx

[SMS2006 in reply to Maureenpearl]

You have a great attitude. I do over-analyse things but luckily I am an optimistic and positive person. Stay well and take care x

[Maureenpearl]

God bless xx