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A Hair, Fashion & Lifestyle Blog - By Charleigh Victory

Sunday, 27 May 2018


Oh HI, 

Long time no speak, been a while hasn't it? 

It's been almost 3 months since my last blogpost and I have a lot to update you on. If you're reading this now, thanks for sticking around.

So, many of you know that I was diagnosed with Relapsing Remitting Multiple Sclerosis in October of last year. You can read about that here. Since then I have had two relapses, an allergic reaction to treatment, loss of eyesight, regular hospital trips, a lot of tears and have done a lot of sleeping. Basically, my treatment that I mentioned here hadn't worked for me, not only was it making me sick, it wasn't reducing my relapses and my disease was getting progressively worse. 

The doctors and I decided that I was going to have Lemtrada treatment (Alemtuzumab) which is an IV infusion, given in two courses, 12 months apart. It is meant to kill the immune system (our white blood cells) in the hopes that they will grow back 'normal' after the treatment and won't cause damage to the nerves.

On the 16th of April, I went into hospital to start my 5 days of Lemtrada. I was nervous but also excited because I knew that this was hopefully going to give me a better quality of life but I also knew the side effects that came along with it. I had to take a pregnancy test and have my urine checked beforehand. The poor nurses had to wait about 40 minutes because I just could not pee (lol) - I don't know if it was because I was THAT nervous or I hadn't drank enough in the morning but there I was, sat on the loo, running the tap in the hopes that I could squeeze out a little dribble and get the process moving. 

40 minutes went by, I managed to go and that's when they put my first cannula in and started pumping steroids through my veins.

The first round of Lemtrada is for 5 days and the first 3 days you are given 2 hours of steroids in the morning. My first day, I felt fine in the morning and then I started to feel very light headed and lethargic. My temperature was beginning to rise and I had an horrific headache. Also, my blood pressure was sky high, unbelievably high for someone of my age which was a major concern but thankfully it calmed down, which goes to show it was only up because of how anxious I was. Other than that, I was okay. 

Day 2 was when I came out in hives, head to toe. Honestly, you've never seen anything like it. It was hot, itchy and risen (kinda like if you fell into stinging nettles, only 10x worse). My blood pressure was completely normal by this point and my temperature was stable. 

On day 3, I woke up feeling like I had been hit by a truck. I woke up in tears because I felt like my head was floating in clouds, my chest hurt and I didn't think I was going to make it through the day. While in hospital, you are monitored every 30 minutes so I knew I was being well looked after. During the day, I found it quite hard to swallow and that was when a doctor was called to examine me. 

Day 4 meant I had no steroids before the treatment, which meant there was nothing to take the blow off the drug, so it hits you like a ton of bricks. That's exactly what it did, I felt absolutely awful but I knew how far I had come and that I only had one day left. 

Day 5, the last day! 
My lymphocytes were virtually gone by this point and boy did I feel it. I was so, so tired but I think its really difficult to sleep when you're in hospital. Especially when I was getting woken up every 30 minutes for observations anyways. 7 hours went by and that was it, I said a huge thank you and goodbye to my nurses and I was discharged.

So what now? 

So because Lemtrada has a number of possible side effects, like Thyroid problems, Kidney problems and blood clotting. I will have to have my bloods and urine checked every single month for the next 5 years. This is so, if any of the side effects occur, we will be able to catch them early and be able to treat them. I've already had my first check up since being out of hospital and my urine and bloods are fine. Fingers crossed it carries on that way for years and years to come.

Since being at home in recovery, I have had a number of other side effects like flushing to the face, coming out in rashes, feeling nauseous and headaches. All completely normal according to my doctor and I just needed to ride it out.

What a ride eh? This time last year I was experiencing all of the signs and symptoms of a relapse without knowing that hello, I have MS!? and I am in fact relapsing. So crazy.

So there you go, that pretty much sums up the last 6 weeks and my time with Lemtrada. I have one more round in 11 months time but I am proud of what I've been through and overcome so far. By no means has it been a walk in the park but do you know what? I made it through and I'm still here to tell the tale.


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