It’s day four of Lemtrada, I have one more night in hospital and one more night of treatment, and the rash is here! I currently look like I have the neck of a 16-year old boy after his first experiment with his dad’s razor. It started with itchy arms when I woke up this morning, then spread to my face. I’ve had some antihistamines which have calmed it down a bit but there is a relentless itchiness all over my skin which is incredibly irritating. I’ll have another dose of antihistamines tonight which I hope will damp it down enough for me to get a good night’s sleep. Now the steroids have been stopped I hope my brain will let me sleep a bit longer.
I’m feeling OK. I’m really tired. The hours I’ve slept have got gradually less and less as the nights have gone on and last night I only slept for five hours and 22 minutes. I think the fatigue is starting to build up plus the withdrawal from steroids has made my energy flag. I’m looking forward to getting back tomorrow to my own home, it’s been strange to be displaced for five days.
In a weird way though, I have enjoyed being in hospital. It’s been nice to talk to the other women on my ward, all of whom are passing through between various spinal or cranial surgeries on their way to discharge into rehabilitation services, so their experience is rather different from mine. They have mostly been significantly older than me, and it has been interesting to talk to them about their families and outlook.
The staff have been amazing, and I have been in awe of their professionalism and tireless care. I’ve been so well looked-after, I really can’t think of a single thing that could have been done better. As always, I feel so very, very lucky to be able to access the care I have had from the NHS.
So, I am close to the end of my Lemtrada treatment and so far there have been no alarms, no surprises. The interesting bit is what comes next. Will I see improvements, on my brain scans or on the things I can do? Or just a halting of any deterioration? (Which would definitely still be worth it). When I started writing these last few blog posts I thought they would just be about the treatment itself, but of course they can’t be. The treatment is just the beginning, the real story is yet to unfold. Watch this space.