Cancelled Treatment

[Red-head44]

I have had GPA for four years and have changed from AZA to Rituximan infusions and received my first one early November. I was due to receive one every further 6 months for 2 years. I have had the next one cancelled so am going to contact my specialist today to see whether I need to go back on AZA as I don't want to go back to the start. Have others had treatment cancelled?

[Cookyboy1]

No, I am having my 2nd infusion as I'm texting this, 👍

[gilders]

If your Rituximab infusion has definitely been cancelled, you need to know what the plan is (such as reverting to AZA). Make sure you get to speak to your specialist, this is very negligent of them to stop treatment with no advice.

[Red-head44 in reply to gilders]

Phoned the specialist and she says that it is correct for me not to attend the hospital and she doesn't want me going back on AZA so I am taking comfort from jgold's reply below. She is trying to get further advice so I am phoning back next week after she has had a chance to confer.

[jgold]

I was also changed from Azathioprine to Rituximab. After first Rituximab sessions I was supposed to renew after six months, but in fact it was eighteen months before another infusion was necessary, and it's now almost eleven months since then.

So the need for repeat infusions can vary according to one's condition. Obviously this depends on regular review appointments with blood tests.

I agree you should contact your specialist. You need to know if he has specifically cancelled or if it is a blanket cancellation by an administrator, and you need to know what happens next.

Of course your specialist may be off work himself. Does he have a colleague or deputy?

I'm lucky in that my unit has two vasculitis consultants, both of whom are familiar with my case.

[Red-head44 in reply to jgold]

Many thanks for your reply - it has stopped me worrying that I won't spiral out of control in the immediate future. Specialist is going to confer with colleagues in larger cities about the next step forward. Keep well.

[jgold in reply to Red-head44]

Glad to have helped.

To go onto the next stage, if I get a flare (which in my case shows itself by a vasculitic rash on my legs) we've found from experience that we can let it run for a few days and see if it goes down of its own accord. If it doesn't start to reduce after five days, then I start taking prednisolone (of which I have a spare supply) and tell my consultant. He would then call me in to his next clinic and decide what to do, which might possibly include a new dose of Rituximab.

Of course we are all different (not least in that I have MPA, not GPA) so the procedure I follow probably won't be right for you. But it seems to me a good idea that, having had your next Rituximab infusion cancelled, you should now ask your consultant for advice on what to do if your vasculitis flares.

My consultant also insists that if I get any significant symptoms of any illness, I should tell him straightaway. So if I got symptoms of Covid-19, although the normal NHS guidance is to refer to the 111 website, I would also email my consultant and ask if he has any advice.

[cedric]

I haven't but mine is for immunte if that helps