Im starting Xeljanz for alopecia areata

Hi all you lovely balding beauties! I'm a 31 year old female from Southern California. My AA started 4 years ago and hasn't stopped. My hair has been constantly falling out and growing back over the last four years. Initially I lost all my hair, it was devastating! I have about 2/3 rifht now but once my spots are starting to grow, I have new friends appearing as the others grow in. I went to UCI finally and got a 3 month supply of xeljenz at 5 mg 2x a day. I just started a couple days ago. My dr said I have about a 65-70% chance of it working and it either will work completely or not at all. I'm worried about the serious side affects, but am willing to give it a try. I'm also worried about not being able to get this medication after theee months because insurance will only cover one 3 month supply once a year to patients for free. Anyone have any ideas? Anyone have any serious side affects such as cancer, TB, respiratory infections, pneumonia, etc...? Thanks for everyone's input! This site makes me feel not alone. My heart goes out to you all! <3

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Permalink Reply by Frida Rupert on August 13, 2017 at 4:52am
Hi Singh,

In Australia it's about $1300 (about Us $1000) a month- so less then in the states but still significant. If you have RA that is unresponsive to methotrexate then the price is subsided by the government and costs less then $50 a month. For alopecia though there is no subsidy. I really had to convince my hubby to let get it. We are in a position to afford it but he's nervous about it being long term and hindering our long term plans...I told him that the anxiety and misery I'm suffering would have serious impacts on our long term plans too!

So very much hoping it works as it took a lot of convincing and will be a continuing and significant expense for me.

Hope you find an affordable option for you.

Deb
Permalink Reply by Frida Rupert on August 14, 2017 at 10:14pm

Hi Kara Holly,

How are you going on the xeljanz? I'm still doing ok- feel a bit out of it at times but think thats just the body adjusting and have to go to the bathroom a little bit more but outside of that everything is good. Of course too early for any results but i am hopeful!!!

Hope your journey is going smoothly

Deb (Frida)

Permalink Reply by Karaholly on August 15, 2017 at 4:04am
Hi Frida Rupert! I feel fine as well. The first couple days I had diarrhea in the AM, but it could be attributed to food? I had a normal bowel movement today. I did notice I started my period very lightly the first few days, I mean a few light tampons over a 10 hour time (sorry boys reading, it is what it is!) other than that I feel fine! It seemed to be the first 6 hours after I took a pill for the first few days. This isn't totally abnormal for my body taking a new medication, but figured all info is good info! Hope all is well.
Kara
Permalink Reply by hagster on August 15, 2017 at 10:12am
I will mention (maybe a little late) that my derm wants me to wait until Xeljanz topical comes out next summer to try. It will have a lot less side effects and not be as hard on the old bod even tho it is absorbed thru the skin.
Permalink Reply by Frida Rupert on September 5, 2017 at 10:30am
Hi Kara holly,

How are you going? Only early days yet but I think I'm seeing some results- my body hair loss has stabilised and some fuzzy regrowth in a Mohawk on my hair (but again- not much). My brows I think are filling in. Having said all this it's all very subtle so not sure if I'm being "optimistic " in viewing the results. Think it will be 6-12 months before it really kicks in... how bout you??? Hope you are getting results and remaining optimistic....

Frida (Deb)
Permalink Reply by Karaholly on September 6, 2017 at 12:54pm
Hi Deb! I recently had an episode and lost a decent amount of hair. It's slowing down now and I don't know if it's because this cycle is over for this episode or if it's the xeljanz. I can remarkably still hide it. My hair seems to fall out in cycles of 2-3 weeks then it slows them attacks again. I was reading up on some studies and A lot of people were upped to 10 mg/ 2xs a day instead of 5, and the results got a lot better for them. When do you see your doctor next? I'm going to ask about being upgraded to 10 mg, but I don't see her for a month. That's great that you have some hair coming in!!!! I'm SO glad to hear that. And you must stay optimistic about it, I think that's most of the battle. I still can't even believe this is happening to us, it's so random and just... well shitty is the best word for it! Let's stay positive. My dr also recommended using women's rogaine with xeljanz, I don't know if you want to try that as well. When this first happened I used rogaine and I ended up growing a mini vertical 3rd eyebrow on my forehead! I said "YOURE GOING THE WRONG WAY!!!" I recommend using something to help rub it in so it doesn't drip onto your face if you do use it! Keep your head up! You're in my thoughts and I'm sending good vibes your way!
Permalink Reply by Fingers_Crossed on March 25, 2018 at 2:20pm

Any update on your hair growth and if you are still on the medication?

Permalink Reply by Karaholly on March 25, 2018 at 3:10pm

Hi there. I am currently taking the medication. I had started it last year in August, and started to notice my hair stopped falling out/started to grow at three months almost to the day. Because xeljanz isn't covered by my insurance, I had a big gap in time with taking the medication. I ran out January 1st, and wasn't able to get it for a month. I am essentially starting all over with building up the medication in my body. I'm at 2 months right now, so we will see if it starts to help me again at the 3 month mark. i recently was able to get xeljanz for free through a grivence program. it's through xelsourse. you need to first go to your doctor and i would recommend asking for a free 3 month supply (my insurance gives me one free 3 month supply once a year.) then from there have your dr prescribe it, and your insurance will deny it. you then need to appeal it, and also start sending in your paperwork to xelsourse. it takes a few weeks and insurance is a pain in the ass to deal with. after they deny you twice, your dr sends in a form to xelsourse explaining why you need the medication. i was approved the first time through xelsourse and i wish i would have started it sooner! i had moderate hair loss (what drs call moderate, to me its horrendous) and i had about 1/3 of my hair missing. i am fortunate enough to not have this affect my eyelashes or eyebrows. are you starting the medication? good luck if you are! i havne't had any bad side effects, ive been really healthy thank goodness. i've noticed a little increased acne, but it can be managed by good habits. anyways let me know if you need anything or have any questions for me!

Kara

Permalink Reply by Frida Rupert on March 25, 2018 at 4:50pm

So glad to hear your back on it! I now have 100% of my hair back! Fingers crossed you respond quickly!

Permalink Reply by Karaholly on March 26, 2018 at 12:56pm

F*** YES!! i am sooooo happy to hear that! seriously!!! that is amazing and i am so thrilled for you! i was thinking about you the other day while i was at the doctor and wondering how xeljanz was working for you! amazing!!!!!!!!!!!!!!!!!!!!!!!!!! =D

Permalink Reply by Fingers_Crossed on March 27, 2018 at 10:22am

Thanks so much for your reply. I hope the xeljanz continues to work for you. I’m planning on taking xeljanz in the future. I’m pregnant right now but just doing all my research and following as many people as I can on this  site to continue to gather info. I live in Canada so the insurance stuff might be a little different for me. I’m more concerned about how the medication works, the dosing and all the side effects.  Keep us updated!! 

Permalink Reply by Brock on December 28, 2018 at 9:20am

Hey Kara... I was curious if you are still on Xeljanz and if you had regrowth.

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