Thursday 17 March 2016

It's all over now

I start this blog with about 2 hours left on my final infusion of Alemtuzumab. 8 doses split over 2 batches, 5 last year 3 this. It sounds like a lot, and when you're sat for up to 8 hours with a drip in it feels quite long, but for the year between and I'm sure for the many years after it will seem like nothing. To be honest, within an hour of leaving hospital you forget about being sat in the chair all day.

I started a new job back in January, and for a good week my computer was unusable, those days sat with nothing to do were harder than watching a bag of drugs slowly drain into my arm through a thin tube.

I might be going slightly mad however. Last night I got to sleep no problem, steroids didn't seem to cause a problem, yet when our three year old woke at 1 wanting a drink, he is suffering with a blocked nose so wakes with a dry mouth at times, I remember clearly dreaming of an infusion machine. The monotonous noise of the timed pump, watching the volume infused slowly increasing, waiting for the callback alarm for my half hourly bp check.



The thought that this is it, no more treatment, all being well no more MS symptoms, no after effects of the treatment, and a life where I have MS but no signs of it is amazing.

I've been very lucky, three relapses over three years, a quick diagnosis, and even quicker start to a disease altering treatment is the best you can hope for with a disease that is notoriously difficult to diagnose in the first place. I cannot speak highly enough of the staff at Sunderland royal hospital. From the neurologists who diagnosed me, to my dedicated MS nurse, to the infusion nurses and all the staff on the phoenix ward (infusion ward). They have all been brilliant.

The support I have had from my family has been equally amazing and I doubt I could have got through it without them.

So to finish on a really positive note, I have completed the treatment that hopes to give me a symptom free future with MS, I can now go about living the rest of my life, happy and without that shadow looming.

Wednesday 16 March 2016

Excess energy from steroids

Its day two of my treatment and only effects I've felt so far is the restless energy from the steroids. I'm getting a big dose 300milligrams of methylpredislone each day, it makes you twitchy and keeps you awake.

So last night I finally got to sleep at about 2:30, today I'm tired from the lack of sleep, but wired from today's dose. C however got little sleep as I went into the spare room in the hope of not disturbing her, only to be replaced by two twitchy kids cuddling in and making it uncomfortably hot. She doesn't get the steroid boost so is shattered.

As the day draws to an end, the treatment was straightforward, no problems, no ill effects and I actually feel tired. Here hoping for a full night's sleep for the whole family before my last day tomorrow.

Tuesday 15 March 2016

A year passes quickly

Well a year has passed since I started my treatment on Alemtuzumab, its passed quickly, and today I started my final round of treatment. This time its three days of treatment rather than five, and I'm being treated as a day patient.

The year between treatment has be a varied one, but as far as the MS goes its been plain sailing. I have had no symptoms of MS and no side effects or complications due to the treatment. I did have a water infection,which is unusual at my age, so put down to the treatment. But it was merely a minor discomfort, treated with antibiotics and gone in about two days.

This year is going fine so far, had anti inflammatory steroids and antihistamines first, then the dose if Alemtuzumab. All delivered through a cannula. I have felt no discomfort nor ill effects, but I fully expect to have some insomnia from the steroids and a rash later in the week.



This morning started with a visit from a practitioner from Scotland, the hospital where she works is looking to start treatment of patients with Alemtuzumab soon. As a new drug in terms of MS treatment, she wanted to see the administering of the treatment and speak with some patients about how they have found the process. My nurse was very keen to help with spreading the good word of the treatment, and I'm more than happy to help. Alemtuzumab has been brilliant for me. I have had no negative effects from it, and a symptom free year since starting treatment. Although it has not reversed the damage of previous relapses, the lasting effects seem minor to me and there has been nothing new. This time last year I had difficulty walking, a fast walk was not possible and running was out of the question. After a year I can now run as fast as our five year old, as tested by trips to the toilet during a full day walking round Chester zoo. Why must kids always wait till the last minute? But being serious it was brilliant being able to run with him, and to be able to walk for that long. I might well have been capable without Alemtuzumab, but for how ling? When would the next relapse have come? The hope is now it wont ever, and although I will always have MS, is it really MS if I'm symptom free?