ms medications roulette

In which I apparently decide to change my medication AGAIN.

An actual fork in the road - from the first Muppet movie

In the sparsely-populated series of positives from the COVID outbreak, one was my recent annual MS MOT. Ordinarily this involves me getting over to Nottingham to see my neurologist for an at-most 20 minute appointment. Even though it's only short it can wipe me out completely for the reds of the day.

The other week, I had the same appointment over the phone.  We talked about my recent MRI results, my general physical and mental state, and a number of topics that I would probably not have been comfortable mentioning face-to-face.

Obviously another thing I asked about was whether I would be able to take the COVID vaccines in the future. He said that being on Tysabri I should be fine, because it isn't an immunosuppressant. Tysabri is an immunomodulator, that works (here comes the science bit!) by creating a wall that stops white blood cells from getting past the blood-brain barrier and into the central nervous system.

So that was a bit of a relief.

However...

As I might've  mentioned before, I've always been a low-positive on the JC Virus test - this is the virus which can lead to PML. As I've been on Tysabri for over three years now, the risk of developing PML is increased. 

As such, my Neuro advised me to start looking at a change in medication. If there is an increase of my JC virus titres (basically the concentraion of the virus in my blood), this will change from "advice" to a "recommendation".

There are basically three options for me:

• Gilenya (fingolimod) - a pil which you take once a day. In clinical trials this led to 50% fewer relapses
  
• Mavenclad (cladribine) - a pill which is taken. in two treatment courses, twelve months apart, It also reduces the number of relapses by about 50%
• Ocrevus (ocrelizumab) - an intravenous infusion every six months, it reduces the number of relapses by about 70% - so this is the only option which is as effective as Tysabri
  

So that's something.

But it turns out that all three of these options are immunosuppressants! Therefore they won't work with the COVID vaccine.

Even better was when I received my standard post-appointment letter from my Neuro in which he basically said that I had decided to change meds. As opposed to what I had thought was the conclusion of our chat - that I was just looking at my options.

What larks!

quite reassuring

I got a letter from my neurologist the other day (if you're as old skool as me, your next thought will be, "I opened and read it, it said they were suckers" but I digress). 

My letter said the following:

I am pleased to inform you that brain MRI compared to the previous scan did not reveal any new lesions.

And then:

This is quite reassuring. 

Quite reassuring?! If we're looking for a two-word summary, I'd probably go for, "Bloody marvellous" or something similar. But maybe that's just me. 

At the very least it means that Tysabri is doing its job (reducing relapses). And all without so much of the MRI-visible side effects (brain infection). If this the most I can hope for, let me have it, yeah?

Ah well, it did make me laugh, mostly because I can totally hear him saying it. Very low-key. 

I told the MS nurses the next time I saw them and they thought it was funny too. This then led on to a discussion about the florid eyebrows sported by all the neuros at the hospital. I think it's a sign that they're so engaged with their work that they don't have time for frivolities such as manscaping. 

I have plenty of time for taking care of my eyebrows. And yet they remain, resolutely, OFF. THE. HOOK.