Day 5 – Friday
My parents brought me in today. I went with cheese on toast again this morning and a few cups of tea, as that seemed to help yesterday.
Sadly, back to the normal, earlier time of arriving at 8:00am, and normal morning routine. I felt a little funny again once the Cannula was fitted – it must all be in my head! Dad and I talked cars and football and I was ok.
Today was the first day of no IV steroids so I was hoping the day might go a little quicker.
I had a few rashes over my body in the morning and a little tightness in my chest again – I was given extra piriton and hydrocortisone via IV to help and it did. It just delayed my start time slightly for the the Lemtrada.
Once the Lemtrada was underway I was ok and manage a nap during the morning and early afternoon. In between my naps I was snacking and drinking plenty. I can’t stress enough the difference this had made, keep drinking and snacking!!!
Towards the end of the treatment the itching returned along with the tightness in my chest. The nebuliser was brought over and this helped settle me down a little, I was also given some IV piriton to help with the itching and rashes.
The tightness in my chest had reduced but continued on the way home and I was feeling pretty washed out. I really didn”t have much energy at all; I mustered all the energy I could to have something to eat and then head to bed – I was exhausted.
I was glad to have the weekend to regroup a little before finishing on Monday. Today was one of the most difficult days – I guess it because of the level of Lemtrada floating around my system. Even though I’m just looking forward to sleeping a big part of me is really looking forward to getting this finished on Monday!