Day 3 Wednesday 16 September_rash pevention program

Because of all the rash events of day 2, the on call doctor was made aware and so came to check on me at 01:00  am (a surprise wake up call) just to see how my rash was doing. To both our surprise, there was no rash to be seen anywhere, it seems the anti-inflammatory drug overload was working and doing a good job to reduce my reaction to Lemtrada.

Blood taken at 06:00 as usual, had a shower and while having breakfast got a surprise visit from my neurologist who asked if I’d mind coming to one of his teaching lectures for 3^rd year med students. I was a bit shocked but accepted the invite, he would pick me up in 15 minutes (I thought to myself he was lucky I was already showered and dressed! … now wished I had bothered to wash my hair). As we walked to the lecture my neurologist was asking how I was doing, he noticed I looked good and I even realised I was feeling quite ‘on top of things’, walked very well and felt like I  had a lot of energy, I told him I was buzzing inside, felt so alive (probably thanks to the steroid kick). So all I had to do at the lecture was to be a case study for the students to interview / investigate (from my background I think me neurologist knows that I would be happy to do this sort of thing).

So I was happy for the morning’s distractions and brief escape from the ward. I returned just in time for a quick check over by the doctors, then to make the plan to have some extra IV hydrocortisone before Lemtrada infusion start and some later on after the infusion was completed. Started the steroids at 11:45 and Lemtrada started at 12:35, just had some short delays due to nurse availability, but I didn’t mind… I didn’t have anything else I needed to be in a hurry for. I had the usual flushing of my face, arms and legs from the steroids. I also had the feeling that my heart was beating quite fast, but I knew this was a common side effect of steroids and so I tried not to pay too much attention to this, because the attention would just build anxiety and make it worse. Headache stared by 13:55, it wasn’t a bad headache but I noticed it and so decided that I should try to sleep it off but the headache was short-lived and resolved itself by 15:32. At 16:07 I took some more chlorphenamine to try and bring the rash down, it worked a little but the rash was still visible all over.

Later as the rash had started to come back, the nurses gave me some more IV hydrocortisone and IV piriton too, this seemed to bring the rash right down. These extra shots of hydrocortisone were additional to the usual protocol, but the medics seemed to want to take the overly cautious route with me because the rash seemed to be more widespread and persistent than they had usually experienced already on day 2.

I was irritable and restless in the night, but that could be due to the noisiness of the wards as well as the medication overload. I was fed up of the lady in my ward shouting for her dad to turn the light on throughout the early hours, so I went down the corridor to listen to a different person calling seemingly crazy, random things loudly throughout the night (It hit me that I was actually the fittest, heathiest person in this place and bought on a strange moment of reflection that I could be glad for my current situation, in a weird, angry but sad kind of way)

In summary, the rash was definitely well controlled with a selection of drugs. I was tired from lack of sleep but otherwise I was feeling really good (probably thanks to all the drugs). No new picture for today because the rash events were mostly uneventful today!