• Melanie Williams

I’m over 200!

Mel on her ICE adventure trike
Mel on her ICE adventure trike

Last Tuesday saw me hit the day of my 200th Strensiq injection. I have come a long way over the last six months. From huge, painful and itchy injection site reactions to barely noticing. I still need to take the antihistamine tablets to keep the reaction away but it is nowhere near as severe. In fact it will be interesting when the hay fever season is over as I will then try without the antihistamine. I’ll let you know.

The severe bone gnawing bone pain has reduced tons. Likewise I have gone from zero energy during the first two weeks, when I spent the whole time on my sofa, to being able to do two things in a day! In the past I have really had to pace myself to be able to achieve what I needed to do during the day. I would say my general health is much better as I am not so fatigued and therefore able to do more exercise. My form of exercise is using my electric trike and I have been out on it most days recently. The problems with my tendons in my feet is still severe so walking remains very painful and due to the degeneration I know that won’t improve. I sincerely hope that younger people who have access to strensiq will be able to stop breakages, chrondocalcinosis and tendon problems in their tracks before they start.

I still find injecting quite painful dependent on where you inject. The stomach is always less painful than the thigh. I have recently started injecting into my buttock too and that’s also not as bad as the thigh. I was told by the nurse not to massage the injection sites but having been told by other users that it helps I began about 6 weeks ago. It certainly has helped, not too much pressure and only for about 20 seconds really alleviates the sting .

Sadly we are also in the middle of the COVID19 Pandemic. Therefore I am not working at the moment and consequently this could be skewing my results as I’m not comparing to my normal lifestyle. I remain pretty confident that it is helping though.

I receive the medication in the UK through the Managed Access Agreement. My 3 monthly appointments have been postponed for now but I recently was phoned to answer the questionnaire. Just 4 questions. The delivery of Strensiq has carried on throughout the crisis as normal and, obviously, taking precautions when receiving the package as advised with any delivery these days.

So mostly very good news to share. I hope the information helps.

My best wishes to you all in these difficult pandemic days.

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