I wanted to write a bit about coping with a vasculitis disease relapse. This is prompted by a post earlier today in the CNS/cerebral vasculitis Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with cerebral vasculitis in 1997. Stabilised with initial treatment. Then relapsed badly in 2004. I’m still here, 14 years after that relapse
Relapse is common in vasculitis patients, particularly certain kinds of the disease, including the 1 in a million form I have. It’s something patients don’t often talk about though, something taboo. It’s understandable. It can be such a struggle to deal with the initial onset of the disease, and stabilise it, hopefully going into remission. Who wants to think it might come back? But it can and often does, and I think it helps if we can be at least prepared for that.
If it relapses in a big way - and here I mean more than a short temporary flare or limited increase in symptoms - normally the relapse symptom pattern is like the first onset of your disease. In my case in 2004 I went from relatively well to suddenly losing control of my legs and arms, agonising headaches, and weakness on one side that I’d fall over to. Very stroke-like, very sudden, very dramatic, and no it didn’t resolve in a few days.
Obviously you should go to the doctors fast, and your vasculitis consultant should be involved quickly. My GP phoned my consultant, to ask what initial treatment changes to make, while they investigated through more brain scans etc. We raised the steroids considerably, and I was booked in to see my consultant in hospital quickly.
But what I want to say is there are lots of treatment options at this point. They can include repeating Cyclophsphamide (Cytoxan in US) chemotherapy, or Ritxumab (Rituxan in US). Or using other immunosuppressive agents at increased doses, like steroids, Methotrexate, Mycophenolate Mofetil (=Cellcept) and Azathioprine. Basically yes, there are lots the medics can do. And there is no obvious reason why this treatment shouldn’t be successful.
Coping with a relapse can be much harder emotionally than physically. It’s a horrible shock, even if you’d considered it might happen. But your prognosis can be good. So don’t be scared.
I wish this was an aspect of vasculitis that patients talked about more. Again I feel it’s rather taboo. But having gone through it myself, I know that it can be dealt with, and treated successfully. So if it happens to you, please have hope. Yes be rational and calm, and realistic, but don’t automatically think the worst. Just take it one step at a time.