Pregnant and stopped taking Xeljanz (for AU) - help!

Hello!

I have Alopecia Universalis and had been taking Xeljanz consistently for about 3 years. Once totally bald, with Xeljanz, ALL of my hair returned. It was a miracle! 

4 months ago, I got pregnant, and stopped taking Xeljanz. About 3 months in, my hair started to fall out (seemingly overnight!). As someone who has been down this difficult road before, it is quite terrifying. :(


Post-pregnancy, once I return to Xeljanz, I am hoping and praying that my hair once again returns.

Is anyone else experiencing this? Has anyone else experienced success stopping and again starting Xeljanz?

Thank you SO VERY much! xo

Views: 255

Comment by sadele on January 23, 2018 at 11:57am

Hi Laura,

I developed Alopecia when I was pregnant with my daughter in 2013. I had no history nor do any family members have this. I lost all the hair on my head during the pregnancy. After I had her, my hair grew back. When she turned 1 years old, I lost all the hair on my head AND body (including lashes and brows) within 6 weeks. 

I took Xeljanz for a couple years and had "incomplete" growth. Meaning, my growth wasn't good enough to not wear a wig. Fast Forward to October 2016- I became pregnant again and had to stop taking xeljanz. Unfortunatley I had a miscarriage that December. I didn't resume Xeljanz until April 2017 because I wanted to give my body a break. I resumed Xeljanz again in April 2017 and within 4 months I had full re-growth on my head. For some reason this time around my hair grew in much quicker and fuller. I was starting to get lashes, which I was thrilled, but learned we were pregnant in July. Again, I had to stop taking xeljanz. I've been off Xeljanz since July 2017 and I'm due to have my second child in 4 weeks. The majority of the hair on my head stayed put, although I have diffused thinning on top and the sides are bare. I can get away with wearing a thick head band to cover the top. After I have the baby, I plan on starting Xeljanz as soon as I can. I'm grateful I still have some hair left from the previous growth, but it's really heard watching it thin out. 

Stopping xeljanz and starting it 6 months later actually helped my hair grow in faster and thicker. I don't know why, but it grew much better than when I originally took xeljanz. Pregnancy is a roller coaster of emotions as it is, but try to keep the big picture in mind. It doesn't last forever and once you're able to re-start xeljanz, maybe things will kick in very quickly for you like it did for me.

I'm due February 23rd and depending on breast feeding I will keep you posted on when I start back on the medication and how it's going.

Comment by LauraL on January 29, 2018 at 5:13pm

Thank you for your thoughtful note!

It is SO helpful to hear from others who are on a similar journey, and who have the real ability to say "I know what you are going through". I can't thank you enough.

What has been keeping me up at night, this go around, is wondering whether Xeljanz will work for me again, this second time. It sounds like it did for you, so that is very very encouraging to hear. I've had a difficult time finding any other posts, literature, other examples of this. Have you come across anything / heard anything?

My husband & family have been trying to remind me that "it worked the first time and so it will work again". I hope that is true. It would be a reasonable assumption I suppose. And I suppose I have no other option than to believe it.

Thank you again. Sending positive thoughts and prayers to you - I look forward to hearing an update on how things are going, post-baby. :) 

Comment by LauraL on March 7, 2018 at 6:28pm

Hi Sadele!

I just wanted to check in with you - How are you doing post-delivery? Congratulations, by the way! :) I hope all is well.

Have you started taking Xeljanz again?

Best,

Laura

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