JAK Inhibitor Experiences: My Journey to Hair Regrowth and Hidden Risks

jak inhibitor hair
Hiking without a wig for the first time in years. Kaelie Piscitello Photos

What I Learned About the Promise and Pitfalls of This Alopecia Treatment

Written by Kaelie Piscitello

jak inhibitor regrowth
My hair about 1 year into taking JAK inhibitors to grow my hair back. Kaelie Piscitello Photos

Disclaimer: This article is not meant to persuade people to take or not to take JAK inhibitors for any autoimmune disease. This article reflects my personal experiences with taking JAKs for severe alopecia. I am not a doctor sharing medical advice. I only hope to to shed light on a pressing topic for many alopecia patients.

Back in the summer of 2022, headlines broke about the FDA approving a medication that helps alopecia patients grow back their hair, JAK Inhibitors. People in the Alopecia community, including myself, became excited about the incredible news., I hadn’t visited the dermatologist in years because the doctors could not help me. None of the other current treatments worked for me, so I couldn’t wait to try something new.

JAK inhibitors, or Janus kinase inhibitors, treat inflammation and help with cellular growth. Before doctors studied the drugs’ impacts on alopecia patients, they used JAKs to treat people with other autoimmune diseases, including rheumatoid arthritis and ulcerative colitis.

When I chose to start Olumiant, or Baricitinib, my doctor warned me about potential side effects, including a lowered immune system and increased cholesterol. I felt more excited than anything about this medication and what it meant for people with this lifelong autoimmune disease.

jak inhibitor hair
1 month into taking JAKs. Kaelie Piscitello Photos

Did Olumiant Work for Me?

Barcitinib, grew all of my hair back, and I noticed positive effects from it almost immediately. Within one month of starting the medication, I grew a full head of white peach fuzz! I also found eyelashes and light arm hair within the first two months. Most impressive, my eyebrows, which fell out at the age of eight, grew back in for the first time.

I couldn’t believe it. Nothing else had worked to fix my alopecia before, and I felt shocked and excited when everything grew back.

Side Effects

Unfortunately, the JAK inhibitors destroyed my immune system. Before starting Baricitinib, I rarely got sick. However, just about two months after beginning this medication, the only change in health and life, I was hospitalized with mononucleosis.

Doctors expressed that the mono’s severity resembled patients who had contracted the disease multiple times. I was sick for months, which significantly impacted my ability to attend college classes, work part-time, and manage daily life.

jak inhibitor hair

After recovering from mono, I continued to contract all kinds of illnesses. I caught pink eye six different times, I always seemed to have a cold, and an allergic reaction to an earring developed into a severe infection requiring a trip to the emergency room overnight.

Lowering the Dose

About a year into taking JAK inhibitors, I decided to lower the dose to improve my immune system. I couldn’t deal with constant illness anymore. Unfortunately, lowering the JAK inhibitor dose caused hair loss within two weeks.

My hair finally reached a length where I felt comfortable walking around without a wig. It goes without saying how devastating the hair loss felt after all the hope I felt throughout a year of growth. I questioned if my health was worth the price of hair.

jak inhibitors hair
The first spot found after lowering my dose from 4 mg to 2 mg. This was about two weeks after lowering the dose. Kaelie Piscitello Photos

My Choice to Stop Taking JAKs

After another six months, I decided to stop taking JAK inhibitors altogether, despite the hair loss I knew would happen. Since choosing to stop taking JAK inhibitors, I learned information I hadn’t before, including the effects of drinking alcohol with the drug and how it can increase cancer risks. Everything considered, I have no desire to try another JAK inhibitor anytime soon.

I wish Baricitinib didn’t make me so sick, because it of the positive effects it had on my Alopecia. I’m still glad I tried the drug because now I know my hair can grow back with the right tools. It gives me hope for the future. I’m happy to hear JAKs work for other alopecia patients and that doctors continue to research both JAK inhibitors and other treatments.

I remain positive about the future of hair loss treatments and hope doctors will find a cure in my lifetime. Until then, I will continue to buy fun wigs. 🙂

Alopecia Circle

In a few weeks, I plan to start a casual monthly alopecia support group soon called Alopecia Circle! Alopecia Circle will provide a platform to connect Alopecia patients so we can discuss our autoimmune disease with other people like us. If you’re interested in joining, please comment down below or send me an email at postcargetaway@gmail.com.

jak inhibitor hair
Wearing a wig again for the first time in almost a year. My hair fell out completely within 6 months of lowering the dose of and then stopping Baricitinib. Kaelie Piscitello Photos

All information about JAK inhibitors in this article has come from my personal experiences. To learn more about alopecia, please visit the National Alopecia Areata Foundation at www.naaf.org.

Author

  • postcard getaway

    Kaelie is the editor of Postcard Getaway and travel lover. As an avid reader, Kaelie loves to draw inspiration from other travel writers and her personal experiences.

    View all posts


Like this article?

Subscribe to get the latest posts sent to your email.

Like this article?

Subscribe now to stay updated every time a new story comes out!

Continue reading