Any link to treatment for GPA and Stroke

[Red-head44]

I received my latest round of Rituximab on Wednesday and within 20 mins of finishing took a stroke. I'm ok and after three episodes it cleared away. Is there any evidence that any of my meds could have caused it: Rituximab Prednisalone,?? After fighting GPA for six years you just don't need anything else!!

[SheffieldJane]

I don’t know if this was a side effect of Rituximub, or whether it was a combination of events including GCA. I just wanted to convey my sympathy for what you have been through. Glad things seem to be on the mend. Take care!

[eh66]

No idea about strokes but during my last Rituximab transfusion my blood pressure dropped pretty dramatically - felt slightly out of sorts but the nurse decided to continue as everything else looked ok. It could be due to the combination of Ramipril and Atorvastatin that my consultants use to keep me in remission. In other words maybe the combination of your meds and your condition, with the transfusion triggered it. I always go to my consultant with a list of questions.

[Mooka]

I have no idea either. Just wanted to say I hope you are okay. X

[Angels54]

So sorry for you , have to say wh I had it I thought I was going to die, ended up in hospital 2 wks later pain in chest , lost stone in weight bought complan to build me up , I did say to consultant never again , so good you ok , we know our own body you make sure what’s best for you .👍

[Paprika60]

Yes, I did. A week after the first infusion I had the worst vasculitis attack causing severe neuropathy with blistering hives all over my legs and feet. I ended up at A&E where they prescribed a high dosage prednisolone (30mg) to be reduced every week. By the time I came down to 10 mg, I had a stroke on my thalamus. That was seven years ago and I am still suffering massive nerve pain and etc. all the time. The doctors couldn't explain why I had a stroke even after four lumber punctures. I had no other issues that could have been a cause. My guess is the vasculitis...although never confirmed by the doctors. It may also be the high dosage Prednisolone combined with Rituximab. I knew Rituximab wasn't working right for me from the day of infusion as I was completely wiped out on a level that I had never experienced before. This was a life changing damage for me. Are you completely recovered from your strokes?

[Investigator1]

Hi Red Head sorry I have just seen your post. My deepest sympathy for you how awful. I don’t know about strokes but I feel like passing out sometimes, usually in the mornings. It’s like a wave coming over me, it’s worse in the first 3 months after treatment. In fact I ended up in hospital in May because I felt so ill, I genuinely thought that was it. Low sodium! Something as simple as that. My discharge letter stated primary cause was Rituximab, secondary cause GPA.

Here’s a thing. I have written down the medications and my condition on a card to give to A&E staff if it happens again. Beware! The A&E staff had no idea about Vasculitis and were too busy to check my records, they kept telling me that they didn’t recognise Rituximab or GPA and kept asking me if I was on illegal drugs. It wasn’t until my bloods came back they realised I wasn’t. It was a right ordeal. Just thought I would mention it.