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Lately I've been thinking about how lucky I am. As I've mentioned before, my last relapse was my worst yet, and the treatment I'...


Tuesday, 30 August 2016

Out with the old, in with the new v.2.

This was written in June, but for some reason the photos just refused to show up. This is now working (finally), and rather than procrastinate and edit this further, I'm just going to post this blog as it is.

I will be posting more soon (I promise!) This blog post is more the bare bones info of the treatment I had back in April, to give you some back ground info.

From needles:

To pills:

Now, Chemo (ugh, a cannula):

In my last blog, I mentioned how I'd stopped Gilenya so I could have Lemtrada, and hoped to start Lemtrada in February.

Gilenya had made my Lymph cell count too low for treatment (as it needs to be high enough before it gets obliterated by Lemtrada). I had what I consider a major relapse in February, as I woke up half paralyzed. but on my right hand side this time.

Thankfully, I managed to regain some movement after about half an hour of waking up, but I couldn't feel a thing, making walking or doing anything virtually impossible. Really, I should have had a wheelchair, but one won't fit comfortably in my flat (I wouldn't be able to fit it in the bathroom or anywhere), so any minimal walking to the toilet, etc, involved me watching my right side to move, and leaning on my stick in my left hand.

I still live in a first floor flat, with no lift, and was stuck in my flat for the best part of three weeks. I was prescribed steroids to help speed things up, which it did, but it also messed with my sleeping pattern, and kept me awake all night, as well as making me want to eat everything. After this, it was still extremely difficult to go down the stairs. Thankfully my Mum lives nearby and was able to help me with everything. I had a blood test to confirm that my Lymph cells had gone up, and they had (not surprising as they were attacking me), so treatment was confirmed for April. The council have also moved my priority banding up to the highest possible, although no suitable properties are available at the moment.

Since the relapse? Thankfully I started to recover, but as always after a relapse, I was majorly fatigued, and then I started Lemtrada - the wait seemed like an eternity! I was so worried of not being on any medication because of the relapse, that when I did start it was a huge relief.

I stayed in hospital for nearly a week for my treatment. We had intravenous steroids and anti-histamines first (anti-histamines to help with the horrible rash you can get), then the good stuff - Lemtrada aka Campath aka Alemtuzumab.

The steroids made me feel like superwoman, and forgetting that I hadn't really used my legs properly in months, I once jumped out of bed, only to fall on the floor. Sleeping was impossible, but as the steroids made me feel great, I didn't mind. The rash made me look like I should be in quarantine, but the rash wasn't as bad as I made it look.

For the first two weeks, I was shattered, but slowly I started to notice a marked improvement from before. I still get a numb hands from time to time, and I have a permanently numb right foot after my last relapse, which is also slightly dropped (I keep stumbling & catching my foot on things). However, I've had more energy, and been able to stick to plans. I am using my stick, but much less than before.

Overall, I think I've made the best decision. I am fatigued, but this could be from the treatment, as it's a form of Chemotherapy, and tough on the body. My liver did not like the treatment at first, and they nearly stopped my infusion (as the entire dead immune system has to be processed by the liver), but they went ahead in the end, as apparently it's normal for the Liver function to go up.

Going forward, I'm trying to do more exercise, mainly Pilates at the moment to get my strength up, and taking it easy, even if I don't want to.

I feel extremely lucky to have had the treatment, and think that the medical staff who looked after me were fantastic. Hopefully if the treatment continues to work, I'll be able to work again one day, and give something back into the system that helped me. It certainly beats injections, plus I don't need to remember to take a pill once a day. I have another treatment next year over three days as an outpatient, so I should have more of an idea if it's worked then.

I'll try and write in this more regularly, I've spend most of this year unwell or recovering so far, so fingers crossed the rest of 2016 will be different!

Jo xx