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  • Writer's pictureKate Walker

6 month SKYCLARYS update

In February of 2023, the FDA approved the first ever treatment for Friedreich's ataxia, SKYCLARYS. This approval was a long time coming, positive results first being announced in October of 2019. Reata Pharmaceuticals (now aquired by Biogen) first started testing the new medication back in 2017.


If you want more information about SKYCLARYS, you can go to this website:




or watch this video:




Disclaimer: This post is about my personal experience on Skyclarys. Not everyone taking it will experience the same effects. Skyclarys is only available for patients in the U.S. over 16 years of age. Do not read this post seeking medical advice, this is simply what I have experienced over the last six months. If you think Skyclarys might be right for you, consult a medical professional.


 

When you go to the doctor showing symptoms, he/she gives you a treatment to make you feel better. Whether that is a surgery, procedure, or antibiotic, usually there is a solution. The doctor doesn’t say “We can’t do anything for you. Just go home and watch your symptoms get worse and worse.” But that’s how having FA was…until Skyclarys. I just had to watch my body deteriorate and couldn’t do anything about it. 


I started Skyclarys in July of 2023, about six months ago now. I was fortunate enough to be one of the first FA patients to receive the medication because I did all the insurance/doctor approvals beforehand. The thing with Skyclarys is that it is really different for everyone. I had friends in the open label trial that said "Yes, this for sure is making a difference" and friends that said "This doesn't do anything." My neurologist also told me that the changes would be gradual. I wouldn’t wake up after one day on Skyclarys and say “Wow, I feel better.” It would be more like noticing small changes after longer intervals of time like three months, six months, a year, etc. Needless to say, I was terrified to see if/how it would affect me. What if all the build up was for nothing? 


 

Six months later, here are some positive changes I have noticed:

  • Increased energy level

This is the first change I noticed. I feel like I have more energy throughout the day and require less sleep at night (still need 8.5 ish hours but that’s way better than needing 10-12 hours!) If I get too much sleep, I wake up feeling groggy, which is something that I have never experienced.

  • Less choking on liquids

This is such a positive change! I used to choke almost every single time I drank water, but now it only happens a few times a month.

  • Speech improvements

I don’t run out of breath as fast or feel as tired when I am talking a lot. Some people have said that my speech sounds more clear, but I can’t tell to be honest.

  • Slower progression

There’s really no tangible way for me to explain this. I just feel stronger and do not feel like I am getting worse everyday. I also have been going to a trainer or PT 4-5 days a week since I started Skyclarys. When I moved back to college after this past winter break, I was able to bounce back into my routine without feeling like things had gotten harder over the break. 


Negative side effects I have experienced:

  • Decreased appetite

I noticed this pretty early on. I don’t wake up hungry anymore even though I always have. In the beginning, I just didn’t eat when I wasn’t hungry, but then I realized that my body was still hungry and needed food for energy, I just didn’t have the traditional hunger feeling. I now have learned to set alarms to remind myself to eat.

  • Stomach issues

It’s manageable, but I have to be mindful about what I eat. I won’t give you too many details, but you can fill in the blanks.


 

Overall, I believe Skyclarys has caused many positive changes for me and I hope that it continues to do so. I also hope that it will soon be available to international patients and pediatric patients. Having access to a treatment is something that everyone with FA should get to experience. Hopefully, this is the first of many approved treatments eventually leading to a cure for FA!





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