Not being offered Rituximab for GPA

[Wyllow]

Hi all, I have had GPA for over 3 years and am on methotrexate and prednisolone among many others. I have never been offered Rituximab although did have a blood test for suitability but nothing came of it. My ANCA levels are rising again having also been on mycophenolate and others but had to stop because of side effects. My question is has anyone gone into remission without ever having Rituximab? Thanks for any replies 😊

[RP99]

Hi WyllowSimilar for me, I was due to go on it but my consultant decided to try something else and I trust him. I'm in remission without having taken it and just have odd minor flares. I have a limited version of GPA so the alternative was better due to lower risks. I'm 16yrs in with GPA and settled with my treatment plan. Things should settle with you too, just give it a bit longer. Good luck with everything.

[Wyllow in reply to RP99]

Hi RP99, thanks for your reply, please may I ask what treatment you had? I have always been on methotrexate and prednisolone which continues but they keep mixing it with mycophenolate, then Leflunomide, then Azathioprine each one adding more side effects and making me feel worse each time, I have to work full time for many years to come and there is no one to help me. There was also another one at the beginning but I can’t remember what it was, thank you

[RP99 in reply to Wyllow]

I started the same as you, methotrexate and prednisolone. After a few years came off steroids. I was v tired/fatigued during this time - combo of disease settling and meds but went into remission so was v happy. Was happy and settled on methotrexate for a few years then blood results showed it was having a negative effect so tried leflunomide and then mycophenalate. Both had negative effect so went back onto lower dose methotrexate and all good until recently. Now on both methotrexate (lowest dose tolerable) and azathioprine. All good and settled. I haven't been able to come off meds at all without relapsing so have accepted long term meds. V few flares. Everyone is different so you'll respond differently to meds. Your consultant will work with you to find the best treatment plan and sometimes it's trial and error until you settle but regular blood test should spot anything before it becomes serious. Wishing you all the best.

[Wyllow in reply to RP99]

Thanks RP99, all the best to you too

[Candy-rojo in reply to RP99]

Can’t tell you how much it means to hear that you came off the steroids. I think they’re really affecting me. My weight is appalling, my whole face is moon-like and I don’t know what good they’re doing me. Not even keeping me awake anymore! And gave me diabetes too. Sigh.

To read that you felt like this and have come through it fills me with hope. Thank you!