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  • Melanie Williams

Day 3 on Asfotase Alfa (Strensiq)

Can't believe it. I went to bed at 10.00pm and slept util 9.45am! Didn't get up once in the night - this is unheard of. I had to rush around like a mad thing to make sure I'd had my breakfast before Wendy the nurse arrived. I will still eating my toast when she turned up. I think the sleepiness may be due to the medication but time will tell.


Today I chose to inject into the outer part of my leg. Once again this was more stingy than the stomach area for me but not as severe as the inner leg area. The stinging went away after about 3 minutes. I have been very lucky so far and haven't had any reactions at the injection sites at all possibly I am tolerating the drug well but I am taking an antihistamine . I was really expecting a reaction as I have huge reactions to insect bites every time. All good so far.


I discovered today that I will need a small sharps container for my trip away at the end of the month. I had thought of buying one but apparently if it hasn't been supplied by Lloyds Pharmacy Clinical Homecare it can't be collected by their drivers. This has been omitted from the prescription list which is provided by the hospital so I've reported that back to the team at my hospital.


This Saturday the Annual Metabolic Support Conference is taking place at The Studio Birmingham. Improving Patient Access to Specialist Services and Treatments 10.00am – 4.30pm, Saturday 12th October. The day is focusing on the importance of the patient voice and lived experience in the decision making-processes to improve specialist service and treatment provision. There is also going to be a break out session in the afternoon especially for HPP - Managed Access Agreement for Hypophosphatasia (HPP) patient and family session. See the link for the Agenda. You need to book your place if you intend to go. https://www.metabolicsupportuk.org/conference/


I wasn't sure if I was going to make the conference but it appears I am going to be fine on the new medication so I will be there. So please find me if you have any questions about my experience so far. (I am not medically trained obviously - this will just be my own personal experience as a patient.)


#hpp #hypophosphatasia #managedaccessagreement #asfotasealfa #strensiq #metabolicsupportuk



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