Friday 24 January 2020

four weeks good, six weeks... just as good?

At my recent MS MOT, my neurologist was pleased. No new disease activity, no new symptoms.

His big issue recently has been that I’ve been on Tysabri for over two years. And in all that time I’ve been JC Virus positive.
The JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been exposed to JC virus. You are unlikely to know if you have been infected, as JC virus causes no symptoms, and is normally kept under control by the immune system.
However, if your immune system is weakened, the JC virus can reactivate. It can then cause serious and potentially fatal inflammation [my emphasis] and damage to the brain known as progressive multifocal leukoencephalopathy (PML).
- from the MS Trust website
And he told me that, being positive for the JC Virus,  if I was in the market for a new Disease Modifying Therapy now,  he would not be suggesting Tysabri at all.

But I’m tolerating it and doing well on it so we’re going to keep things as they are.

Apart from...

There is apparently a large amount of research which says that Tysabri is just as effective when it’s taken on a 6 or 8 week cycle. So after my next infusion I’m going to try going to 6 weeks.

This scares me a little. I’ve mentioned before that I feel "ready for" my infusion by the time it rolls around every 4 weeks. I’ve mentioned this to my neurologist before and he effectively told me it was all in my head. (To which I almost said, “You’d better tell all the other people in the infusion ward, mate”)

But I do trust him. So let’s see.

He’s writing to my GP to let him know and also to recommend another round of Cognitive behavioural therapy (CBT) .

One thing which was interesting was when, during the conversation, I said that Intermittent Self Catheterisation changed my life.

He looked a little crestfallen, like "I feel bad for you but it's one of those things"

I immediately said, "Oh no, I mean it's changed it in a good way".

Because it really has. Once the logistics are taken care of I can actually leave the house on-or-thereabouts the time that I need to.

He was also a little put out when I said that he often gets the best-case version of my condition, whereas the MS Nurses tend to get the uncut no-holds-barred version (lucky them).

My logic for this is, the Nurses are there to support and empathise, and to make recommendations for my treatment. Whereas he has the power to upgrade my MS from the more benign (HA!) Relapsing and Remitting variety to the (80% of all PwMS) Secondary Progressive MS.

So forgive me if I sprinkle a little sugar on top for you!

I like to think I'm not alone in this. Or maybe I'm just being an idiot?

(not entirely beyond the realms of possibility)

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