Discussions tagged “Hypophosphatasia”

I was diagnosed with hypophosphatasia a few months ago. Strensiq has been recommended by my specialist and I’m trying to understand more about it. I’ve read the packaging insert, but it’s tough to know how serious the side effects are. Has anyone else been on Strensiq? What were your experiences, especially with the injection site reactions and other possible side effects? My biggest concern is the risk of severe allergic reactions, which the packaging says is rare but still scary. Any insights or advice?

I've been on Strensiq for about six months now, and I've noticed some improvements in my bone density. However, I'm concerned about the potential side effects, especially the more severe ones. Has anyone else experienced any of the urgent side effects listed, like changes in eyesight or difficulty urinating? I'd love to hear from others who have been on this medication for a while. Also, any tips on managing injection site reactions would be greatly appreciated!

I was diagnosed with hypophosphatasia (HPP) a few years ago, and it's been a rollercoaster. My doctor prescribed Strensiq 28mg/0.7ml injections to help manage the condition. I've been using it for about a year now, and I've had varying experiences. The injections have definitely helped strengthen my bones, but the side effects can be tough to deal with. I've had some mild reactions at the injection site, but nothing too severe. I'm curious to hear from others who are taking Strensiq. What has your experience been like? How do you cope with the side effects? Are there any tips or tricks you've found helpful?

I was diagnosed with Hypophosphatasia in 2015 and my pediatrician has recently started me on Strensiq. My parents did some research and found reports of positive outcomes and I could see my bones become stronger and healthier. They had concerns related to the possible side effects of Strensiq, including reports of skin reactions and changes in urination. However, after extensive research, we became comfortable with the decision and we were ready for the treatment to begin. My parents even followed the the steps in the Strensiq Hypophosphatasia treatment guide. Can someone who has taken this medicine confirm that it's as effective as people say? Are there any side effects not listed on the typical medication leaflet that I should be worried about?

I've been using Strensiq for about 6 months now to treat my Hypophosphatasia (HPP). I've noticed a significant improvement in my bone density and overall strength, which has been amazing. However, I've also experienced some side effects that I wanted to share with others who might be considering this treatment. I've had some redness and swelling at the injection site, which can be quite uncomfortable. I've also had some changes in skin color around the injection area. I've read about some serious side effects, so I wanted to know if anyone else has had similar experiences or if there are any tips for managing these side effects. I'm curious to hear from others who have been on this medication and how they've coped with any issues that have arisen.