Hello!
I met my lovely new Neurologist Dr Gabe DeLuca back in December last year and we went through my entire medical history and discussed treatment options where he offered me three possible drugs: Tysabri, Lemtrada and Cladribine.
I also endured another hilarious physical examination, this time led by his two medical students where I discovered that I cannot tightrope walk backwards (Surely this isn't that unusual?) and they picked up that when I walk I don't swing my right arm. It was fascinating, entertaining and at least this time no one told me I had a wonky face! I particularly enjoyed egging the students on to whack me harder when testing my reflexes, they were a bit too gentle to get my limbs moving bless them.
The drugs discussion in the appointment did come as a bit of a shock though, (WARNING - This bit may bore you!) to explain first, the drugs available for my type of MS (Relapsing Remitting) fall into three categories which correspond with how active your MS is. The categories are:
- CIS (Clinically Isolated Syndrome) where you experience one episode but may not go on to develop MS
- Active RRMS (Relapsing Remitting Multiple Sclerosis) two relapses in the previous two years
- Very Active RRMS - highly active despite treatment OR rapidly evolving severe where you have two or more disabling relapses in the previous year and show new areas on damage on two consecutive MRI scans.
The drugs themselves are then categorised as Moderately effective - reduces relapses by 30%, More effective - reduces relapses by 50% and Highly effective - reduces relapses by two thirds 70%
I was very much anticipating that I would be firmly in the Active RRMS category as although one of my relapses (or episodes in my language) WAS disabling for a short period, it hadn't left any lasting damage. I had pretty much planned to ask to be given Tecifdera which is a tablet, because I liked that it wouldn't interfere with work and the side effects weren't too bad.
However, Dr DeLuca dropped a bombshell and showed me my MRI scan pictures. The lesion on my brain is pretty sizeable and active, and there were too many little active lesions on my spine for me to count from the picture. He also felt that I have actually had 4 relapses in 18 months - hence the classification as Very Active RRMS. Gulp.
Although I have minimal symptoms right now, (not even fatigue this week hooray!) he explained that my body could spring another relapse on me at any point, and the next episode could cause lasting damage. So I was offered two highly effective drugs and one brand new drug called Cladribine which was only released in the UK this January.
I was worried at first because I wanted to keep the strongest drugs in reserve. Kind of a "if this doesn't work, then we've got something else left to try". So to have the strongest possible drugs recommended right now was a massive shock. I do understand though that it's important to hit MS on the head early, to stop it creating any more damage.
After a LOT of googling and talking to people online I picked Lemtrada, the reasons for which I will explain in the next post. What also swung the decision was that my amazing 2nd Cousin Rachel has just had Lemtrada and she was able to talk me through the pros and cons of each treatment. Yay for fab family members!
So my treatment next Monday will entail 5 days of IV infusions, roughly 6 hours a day, which is repeated again a year later (only for 3 days) and monthly blood tests to monitor my levels for the next 5 years.
The picture above is taken from my very swanky Lemtrada handbook which came in it's own purple leather wallet - no expense spared here! I love the picture though, it makes it much easier to understand what this drug actually does. Basically it completely resets my system and gets rid of all the hyperactive white blood cells that are nibbling away on my much needed Myelin.
As I will have ZERO white blood cells for a while I've taken some time off work (both school and repairing) and I will have to stay away from anyone who is even the tiniest bit ill. I've also just paid to have the house "deep cleaned" by an awesome local cleaning company who specialise in Military march-out cleans. Thank you Sam! Pressed for Time Cleaning Company
Must head back to the prep now, I'm currently in the process of planning 4 weeks of music lessons, filling the freezer and getting things ready for next week. So much for half term!
Much love,
Claire x
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