Day 5 Friday 18 September 2015_please let me have the last infusion and go home!

So just to tie up the events of last night, the rash was getting worse and so I had chlorphenamine 4mg at 02:00 but the rash continued to spread. I had a worsening sore throat which I am almost certain I caught from some of the other people in the ward or visiting people in the ward on Wednesday and Thursday (I was so annoyed about the woman in the bed opposite me that coughed across the room at me while she continued typing on her notebook … (cover your mouth! People get taught this as a child!) I was fuming, and the women next to me obviously had a bad cold but at least I couldn’t blame her for coughing straight at me. Just an unfortunate situation, sick people and sick visitors in hospital, I guess this is a probability.

At 03:30 the on call doctor came and visited me in the ward, she was quite young and obviously hadn’t had time to read my case notes properly as all she wanted to know was had I had this medication before and did I get this rash before, she only wanted to know the answer to these questions and repeated them to me when I tried to explain the situation, I had to stop her from talking over me and tell her that she needed to listen to what I was trying to explain (difficult situation, but she annoyed me). That was all from the doctor’s visit, nothing really to conclude.

By 04:17 the rash was still worse on my face and arms.  At 06:00 I had my bloods taken as usual and I noticed then the rashes were finally improving. Where I previously had red blotches, mostly an outline of each blotch was left, leaving me less rashy but still quite covered in patterns.

Around 10:00 the 2 doctors Sophie and Ali came onto the ward to check on me before they gave the final decision about the final dose. I showed them the remains of my rash which was quite widely spread spotty red outlines of the old rash, it wasn’t inflamed or itchy, just like leftover footprints in the snow … you can tell something was there before. But anyway I think the doctors were relieved to see that everything had calmed down despite the dramatic handover they had heard and seen on my notes that morning looking over the previous night and at least I was in high spirits. I think the doctors couldn’t believe it, they were smiling a bit but apologising, haha they said ‘we’re sorry we did this to you’ in a shocked, nervous giggle kind of way.

I obviously didn't take so many pictures at this stage to show the leftover outlines :-( , sorry this is all I've got really for pre dose day 5.

 

At the end of it all, the doctors had some ideas what they might do, option 1: have a break and do the last infusion on Monday! Or option 2 load on the IV hydrocortisone immediately before and immediately after Lemtrada infusion and give 1g of steroids and then some more hydrocortisone later, depending on how the rash develops or not. We discussed the options openly and I asked if I would be allowed so many steroids because I thought I was already at my maximum allowed steroids (probably for the year!), I asked if they could check with Dr Malik (my consultant neurologist) and so they did. By 10.30 Dr Malik had got back to the other doctors on the neuro planned inpatient unit and said to give 1g steroids and don’t worry about the hydrocortisone ‘that would be overkill’ were his words.

The new plan obviously hadn’t got over to all the nurses because I had 1g of steroids and then IV hydrocortisone IV just before starting Lemtrada at 11:20. Honestly I didn’t mind an extra shot of hydrocortisone, I asked the nurse if she was sure I was still meant to have this and she said she was sure, so I didn’t want to make a fuss.

The Lemtrada went in over the usual 4 hour duration with nothing to new to note. By the end of the infusion at 15:15, the nurses had found out / realised no more hydrocortisone was requested by the medics / Dr Malik.

After the infusion I just had to stay for a saline flush (this had been done on all of the previous Lemtrada infusions too, I'm just realising I might not have detailed this in the other day's blogs) and then I left the hospital by 16:50.

Honestly I was tired, I had hardly slept for 4 nights in the ward and had taken quite a lot of drugs along the way. I had spent most of my time just sitting or laying in a bed so the over-rest had taken it's toll and I definitely didn't feel like doing anything more than I had to. I decided to indulge in my own fragility and planned to do very little once I got home.

The End (for now) ... sorry I am only uploading this so behind real-time, I'm trying my best to catch up with my blogging here.