Discussions tagged “PKDeficiency”

My doctor recently prescribed Pyrukynd 5mg Taper Pack to treat my pyruvate kinase deficiency. I'm curious to know if anyone else has been prescribed this medication and what their experiences have been like so far. The drug is relatively new, so I'm interested in hearing about any side effects or improvements others have noticed. I know the side effects listed can be scary, but I'm hoping to hear from people who have managed them successfully. I also wonder how the medication has affected people's daily lives and if there are any tips for dealing with the tapering process. Has anyone had issues with insurance coverage or accessing the medication?

I was recently prescribed Pyrukynd 20mgx5mg Taper Pack for my PK deficiency. I've never had such an intense need for better treatment since I had my PK diagnosis. This medicine is supposed to help my red blood cells live longer by giving them a boost of energy, which should reduce the frequency of my blood transfusions. I'm really hoping it works, but I've read about some serious side effects. Has anyone else tried this? What was your experience like? I'm really hoping that this can help alleviate my constant anemia.