Starting Pyrukynd 20mgx5mg Taper Pack for PK Deficiency: My experience
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.
Starting Pyrukynd 20mgx5mg Taper Pack for PK Deficiency: My experience
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.
Comments (9)
I hear you. The side effects list is pretty scary. I'm on week 2 and so far so good. Fingers crossed it stays that way.
I've been using this drug for several months. It has really helped with my PK deficiency, but I had some pretty bad flushing and my lips were so dry I felt like I was walking around with sandpaper on my mouth.
I've been on Pyrukynd for a few months. The first couple of weeks were rough with some side effects like stomach pain and joint pain, but it's manageable. My red blood cell count has improved, and I've had fewer transfusions. Be careful of the side effects and talk to your doctor. Don't hesitate to report anything that seems off
Keep us updated on how it goes!
I'm on week 4 and my blood transfusions reduced from 2/month to 1/ month. My blood count is improving and my energy levels are up. I'm staying hopeful.
I've only been on it for a week, and I'm already feeling a difference in my energy levels. It's early, but I'm hopeful
Don't forget to report any side effects to the FDA. They need to track these things to make sure the drug is safe for everyone.
Be careful with the liver problems side effects. I had a friend who had to stop taking it because it was messing with his liver. Just keep a close eye on that.
I feel you on the anxiety around side effects. I've had to go through a similar process with Sicklemia (my red blood cells are misshapen) for more than a decade. It's important to keep that open dialogue with your medical team. They have to be looking out for you because Pyrukynd is still pretty new and there isn't a lot of data for long-term use.