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Friday, 4 December 2015

Lemtrada - One Month After Infusions

Well, it's about one month anyway, I had an appointment to visit my Neurologist and Nurse yesterday, it was the follow up Lemtrada visit, they had the results of the first blood and urine test I had for the Lemtrada monitoring. There is an app for Lemtrada monitoring which texts you the results so I already knew all was fine, though it's always nice to hear it confirmed by a human... I also had a chat to the main nurse I've been seeing, Belinda has been great putting up with my incessant questions lol. There has been a lot to take in since I started my Lemtrada infusions journey. She organised everything from start to finish!

I also got enrolled in some research they are doing on Lemtrada recipients, I guess it's just an extra function to monitor Lemtradians. The side effects of Lemtrada can "come on" years later like up to at least three years later, that's why there are monthly blood and urine tests for four years after the initial infusions.

Ok, so has anything changed after the first round of Lemtrada (alemtuzumab) infusions?

Everything I say below are just what I'm feeling and noticing, it's not based on science or medicine, it's just what I feel and think.

Fatigue since Lemtrada

I may have a little more energy, though it manifests itself by allowing me to push through the afternoon MS crash, I would normally need to have my afternoon "nanna nap" now I seem to be able to hurdle that barrier so I can stay awake until a reasonable "proper time to go to bed instead of the Vampire hours I would often keep...

Walking since Lemtrada

I don't hink there has been any change to my walking, I still have good days and bad days, somedays it seems that I can walk quite normally, the next, walking is a bit of a struggle, the morning when I first wake up is the worst... So overall the walking mobility hasn't changed much at all, of course being able to handle the fatigue a little better can help with one's walking.

Fogginess in Left Eye since Lemtrada

My left eye was left with a foggy outlook after a bout of Optic Neuritis, it affected both eyes though lasting damage only occurred with the left eye, the right eye pretty much recovered fully, whew! The fog on my left eye was like pea soup when it first happened, then there was some slightly less foggy gaps in my outlook, if I moved my eyes or head around it was a little clearer in the gaps. Now it seems that the gaps have pretty much disappeared and the fog is more uniformed and just a little less foggy overall, I think!

Numbness in Hands since Lemtrada

Both of my hands have been somewhat "numb" since my very first exacerbation many years ago, they still are a little numb, though I think there has been some improvement in "feeling" or "touch". The numbness in my hands feels like it might have decreased a little, I'll keep an eye on things and see if there is any long lasting improvement...

There have been nothing negative so far from side effects etc. let's hope it stays that way lol!

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