Day 1 on Asfotase Alfa
Updated: Oct 9, 2019
Well last night I just couldn't face going to bed as I was pretty wound up about the events of today. Thoughts running through my mind about the medication "Is it going to work? Am I going to feel poorly? Will there be a reaction? Will it reduce the pain?" I was't too concerned about injecting myself but was more concerned at the size of the needle in the pack - it was about 1.5" long and chunky! I eventually went to bed at 2.00am after binging on a Jane Austen drama on TV. This morning my daughter took me out for coffee and cake as a distraction technique and it worked a treat. Just as soon as we arrived home the Nurse from Lloyds Pharmacy was here. She had travelled 100 miles to train me up and said I was the first adult in her catchment area to receive the drug.
Wendy the nurse was absolutely brilliant from the outset and she rapidly allayed my fears about everything. When examining the pack of goodies I found that the large needle wasn't for injecting but for drawing down the drug from the vial! The actual needle is tiny and I quickly learned how to draw down the medication and inject it into my 'fatty bits'. Wendy advised me to take an antihistamine pill and then we took the medication out of the fridge to reach room temperature, about 15 minutes. Then I did my first injection into my inner thigh. She advised me to administer the drug slowly. It was a little stingy initially and then I would say it felt a bit like a wasp sting but the effect only lasted for about 3 minutes. My adrenaline was running high but that was more to do with the excitement, stress and expectations than the medication I think. Wendy stayed for a good three quarters of an hour afterwards just to make sure I was OK. Since then I have felt fine. So far there isn't anything to see but I have felt extremely tired the rest of the day. Maybe that's what you get for staying up until 2am though!
Wendy comes again tomorrow, in fact it will be five days in total that she gives support. I feel very relieved this evening that I did the injection myself on the first day. Initially it was suggested that she did today and I started tomorrow but hey ho what's the point in waiting and worrying for another night? It was all fine and actually very easy. I will keep you posted on tomorrow's developments.