Ocrevus will be happening! What was speculation and hope in earlier posts is now planned, set in stone, in the diary! Exciting! If you find infusions exciting which, for once, I do. The first two infusions will take place on the 4th and 16th of April with subsequent infusions happening every six months. The target will be to slow and, hopefully, stop the progression of MS. Do I dare to hope?

Progression

Talk of hope comes after what has been a difficult period. One where that progression has been noticeable and when, frankly, optimism has been something of a challenge. I have found myself suddenly thinking twice, maybe three times, about doing all of the things that I love. A long bike ride or a concert. My mind lingers on the moments where I have been vulnerable. The need to lift my right leg with my hand so I can put my disobedient foot on the pedal of my bike or intermittent stumbles when climbing stairs.

Add to these the first time where, as opposed to stumbling, I simply fell. A complete surprise. Took out my bedside table. And my pride.

This is what progression can be. As though my body is eating itself. I am still very capable and my mind, despite being slightly sluggish, is still fairly sharp. Sharp enough to realise that my body is slowly becoming less capable and fatigue is starting to have a greater effect. It is hard to deal with and I would be a liar if I did not say that there are moments where it can all feel like hope is a far away place. Still, I am nothing if not stubborn.

Optimism

Stubbornness helps with MS. It is also good to have the bright light of a possible way forward. This is where Ocrevus makes its appearance. After my hernia operation and recovery it was time for a blood test and appointment with the MS Nurse at Hilversum hospital. She explained what would be happening during those infusions. Ocrevus will basically reset my immune system. A little like Stem Cell surgery only less extreme is how the nurse explained it. There are possible side-effects, usually a sore throat, temperature or coldsores. There are more terrifying possible side-effects with long names that I will not linger on. Well, I will try not to! But what does Ocrevus actually do? Will it cure me?

No, unfortunately it will not. What it will hopefully do is slow the rate of MS progression and reduce the speed at which the lesions are spreading. Those holes in my brain. It will be good to stay still for a short while. I may not be in perfect condition but I will take what I have and use it as a basis to build on. Keep on going. That welcome light of optimism complimenting my stubbornness.

Questions

That optimism is tempered by questions, I must admit. I am only eligible for Ocrevus after having Progressive MS for ten years. Why not earlier? Wouldn’t it have been better for me to be ‘frozen’ five years after diagnosis when I was stronger? How is this decided? My lesions have to be active. Wouldn’t it be better if they were frozen in an inactive state?

I am sure there is a good answer to these questions, rational and scientific. This is my MS, though, so I will not always be rational and scientific. I am living it. Living with the consequences, the questions and a little fear. Such feelings will temper the optimism. There are those possible side-effects of Ocrevus with long names as well. Silver linings come with clouds.

Daring to Hope

I will take that optimism, though. For the first time in this (so far) eleven year journey there is something that may check the progression of my MS. As so often with me, there is an element of luck. If my sister had not sent me an MS Society article would Ocrevus have even been considered?

The focus now is April 4th. A day where I expect I will lay in bed and binge watch a series and read a lot. For a day that will be uneventful in itself there is a lot of emotion. Will the fourth of April mark the start of my symptoms levelling? A period of stability? I am not sure how long it will take to find out. But I am trying to be hopeful. Actually, that is not enough, just trying. Better to dare. Take that chance and build on what it gives me.


1 Comment

Chris H · March 19, 2024 at 11:34

So pleased this is happening, I understand why you are tempering your expectations. I am hopeful for you my friend.

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