Entry 2) Decisions, decisions

“Can I still have a glass of wine while I’m on this treatment?”

It’s now June 2014 and I have some monumental decisions to make. I’m feeling much better and have successfully locked my little MS monster in the cupboard, for now. He bangs on the door every now and then, just to remind me he’s still there so I do my best to ignore him.

Anyway, now I have something else to worry about. My neurologist has recommended that I go on a drug therapy, the strongest one available, to slow down the relapse rate and help prevent any further nerve damage. They’ve just started giving this drug to the newly diagnosed that have rapidly evolving MS to slow it down, to try and halt it at an early stage. Sounds good!

He explains that the drug, Tysabri, is administered via an intravenous drip fed infusion in hospital every 4 weeks, for at least the next 2 years. Oh goodness, more needles. And the side effects? Well apart from all the usual side effects (or disclaimers) that you read on that annoying bit of paper inside most packets of pills, this drug comes with something I’ve never heard of: An increased risk of developing PML. Joy, another abbreviation. Progressive Multifocal Leukoencephalopathy. Don’t worry, I can’t pronounce it either! PML it is. Can you guess what I did next? Yup, asked the google machine:

Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).

I then did what most people would do at this stage – TOTAL PANIC!

Note to self; STOP GOOGLING!

I had a major dilemma on my hands here. This drug could potentially reduce my relapse rate by 80% and therefore vastly reduce the amount of damage that MS could do to me. On the other hand, it might kill me. Hmmm, more info required me thinks but from qualified professionals this time, not the internet.

This was one of the most monumental decisions I have ever had to make and it wasn’t going to be easy. I couldn’t concentrate on anything else and I was still suffering from chronic fatigue. For the first time in my life, work had taken second place and apparently, it showed.

I explained to my employers the decision I was facing and it was suggested that I take a 6-month sabbatical to work this all out and get back on an even keel. Well, after the 6 months of hell I’d just been through I thought this was an excellent idea and grabbed the opportunity. It was unpaid but I didn’t care at that stage. A whole summer to rest, get some sunshine, get some sleep and get myself back on track. I’ll take that!

July 2014 and I am on sabbatical. I book more appointments with my neuro, MS nurses and an MS specialist doctor to get some more facts about this drug. They allay my fears, the risk of developing PML is low for me at the moment and I will be very regularly monitored. I join a couple of Facebook groups to talk to people who are actually on the drug and they all seem very happy with the results. I talk with my family, I do some more research on the MS Trust and MS Society websites.

I then ask one last very important question: “Can I still have a glass of wine while I’m on this treatment?” Yes, that’s fine. Decision made then – in for a penny, in for a pound as they say!

On the 27th August 2014, I had my first drug infusion. It was fine. No high drama and all it did was make me feel very tired. Nothing new there then! This was going to be part of my normal routine for at least the next two years and I made a conscious decision at that point that Tysabri day could not and would not be “the dreaded needle and drug” day. It would instead be ‘treat day’. It would be ‘naughty hot chocolate and cake from Costa’ day. It would be ‘guilt free sleeping all afternoon’ day. It would also be ‘pizza and pinot’ night!

5 thoughts on “Entry 2) Decisions, decisions”

  1. Jo.. you are a girl after my own heart.. I keep saying it but I am so proud of you.. such a difference to the women I met a few months ago. Post this blog to our webpage and Facebook x

    Liked by 1 person

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