First, I would like to say that I am very grateful to my NHS teams, unfortunately more than one, and I don’t want to do anything without them knowing.
I have already been reduced to half the usual dose of my medication because of its effect on other organs. This is not affected at all the disease for which I take this medication and which is in remission. It is very strong medication and it has a short half life. It is not MTX and it is not a biologic.
I was also advised when I began this medication, that could suspend it if I got an infection. I have recently been having a lot of infections and I have been suspending it for one or two days, almost every week. Also, it has clearly now begun to raise my blood pressure, which used to be very low. So that is another reason why I would like to take as little of it as possible and why I’m beginning to think that I could reduce even further.
I would like to discuss with my consultant whether or not I can dose every other day, which in fact I’m already doing, or even suspend it until I have a flare. This is a medication that does not produce antibodies in the body.
My problem is the NICE guidelines. If I stop, I worry that I might not be able to restart: I don’t know. I’m not sure if my consultant is in fact allowed to say that I can lower my dose to every other day or stop it completely, without running into NICE difficulties should I need to restart. It’s possible I wouldn’t be allowed to restart and I don’t want to run that risk.
I’m fairly sure that at the moment I don’t need this medication at all. I’m not having a flare and when I started the medication, it dealt with my problem within 14 days. My problem is that if I tell my consultant that I’m taking hardly any of it at all now, does that not have to be recorded in my notes and does that not make it difficult for him to advise me? What does he have to record?
I need to tread the fine line between being absolutely truthful, which is my preference, and compromising my ability to have this medication available in the future should I need it. Also, I don’t want to put my consultant in a difficult position, although I suppose they are used to dealing with patients like me who want to tinker around with things.
If anybody has direct experience of NICE how to deal with this, I should be very grateful.