Help please what to expect

[stuc]

Hi all

Let me start by saying thank you to everyone who has responded to my previous posts.i have found the advice and support on this website excellent and really helpful.

Background

I was diagnosed with GPA in April 2017. The main area of impact was my lungs which collapsed. I was in intensive care for many weeks.

I was given cyclophosphamide Initially as 6 X weekly infusions . Since July 2017 I have been on azathyoprine tabLet's 175 mg daily and prednisilone which has fluctuated between 5-30 mg depending on how I feel.

On June 12 this year I went to GP with symptoms of pain and itchynes in my nose, bleeding from my nose,swollen joint in my knee,streaming eyes and uncomfortable when I breath

Ct scan has shown lesions on my lung again and rheumatologist has advised 4x weekly infusions of rutixumab in addition to my azathyoprine and increased stereods

Can anyone share similar experiences and what to expect on the ritumab and also if anyone has had ritixumab for such a short period of time as I know it is normally given over a longer period of time.

Thanks

Stewart

[ZiggyDiego]

Hello stuc, sorry to hear you're having problems again and glad they're being proactive to get you sorted.

I've had Rituximab just like you said: it took a while to work but it made a difference. I was diagnosed with GPA in January 2017 and had 6 pulses of cyclophosphamide from Feb-June. Went onto azathioprine, then to mycophenolate as I couldn't tolerate the aza. By late September I was relapsing again so they increased my prednisolone and I started the weekly Rituximab at the end of October.

It was intense having 4 weekly infusions: I couldn't work as they made me very tired but otherwise it was fine. Occasionally I got a bit itchy a few days later, but the process, for me, was much much easier than having cyclophosphamide which made me very sick. My recovery was complicated by infections and breathing issues, so my Vasculitis consultant worked very closely with the respiratory consultant (and ophthalmologist).

I think Rituximab takes longer to work so they use it in the long term to prevent relapses. I've just relapsed again and so I had another one last Friday and will get another in 2 weeks. I've been told I'll never go longer than 6 months now between infusions, and probably less. But I don't mind at all: it definitely does something helpful for me, and for many people it makes a fantastic fifferencd. So good luck and hope it helps you.

[stuc in reply to ZiggyDiego]

Hi ZiggyDiego

Thanks for your response. I hope all continues to go well for you.

Stuc

[rrahman]

Hi there. Sounds painful - sorry.

I’ve actually after 4.5 years went on to azathiroprine. I’ve asked for rimutixab but my consultant doesn’t give it. I’ve only got azathiroprine because I was planning on having a family which is on the backbench now.