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Comment by Shannon on September 13, 2017 at 10:33pm

Dear Brian,

I know how difficult that it can be to lose even our eyebrows and eyelashes.  I am sorry you're going through that and having to make the difficult choices about medication.  Probably when you look back one day you will actually think, "I can't believe I was willing to risk my health like that for my hair."  But I know how you are feeling right now and I also put my health at risk for a time to try to save my hair.  It took me many years to get my health back and even though I have no hair, my life is very happy and full!  

I purposefully changed my profile photo to this one of me with my father.  I am one of 11 children and the only one his children to inherit his alopecia.  It created a very special bond between us.  He was an amazing father.  I lost him last year at the age of 85 and even at that age, it was too soon.  I hope that when days are hard you will think about your daughter.  My father meant and means so very much to me.  I hope you will think about your little one when you make the decisions about your health.  She needs her Daddy!  Even at 43 years old, married and with 5 wonderful children--I miss my Daddy something fierce and I'm so grateful that when he was losing his hair in his mid-30s that he gave up quite early on the experimental drugs they wanted to give him because he knew he needed to be around for his children.  I am so so grateful he made that decision.   Sorry for the rambling.   God bless and good luck.

Comment by Patchesforlife on September 13, 2017 at 8:29pm

what has your doctor said?

Comment by AloPapa on September 13, 2017 at 2:38pm

Who are you trying to impress at this point? Xelganz is a crazy dangerous drug for the non life threatening illness of hair loss. You’ll get better outcomes with healthy eating, living and relaxed life style anyway.

Comment by leah on September 13, 2017 at 2:02pm

PS I did microblading and really happy with the results. Have a friend who uses water proof liner on her husband when he like to have brows (he has alocpeia too) and says no one notices.

Comment by leah on September 13, 2017 at 1:49pm

Thanks for sharing Brian. I can't speak for you but when I took meds that were hard on my liver and had grandma die of liver cancer I had to stop. I feel like it would be really hard if I better results with drugs too, but am sensitive and have other health issues. Plus all the extra expense, I realized better acceptance and save up for tattoos. I wish you the best and good health. Cute picture of you and your daughter

Comment by Alo-mom on September 13, 2017 at 1:32pm

You bring up a very important issue, risk vs. reward. Yesterday the FDA listened to many voices of those with alopecia in Maryland. As the move forward to approving drugs this process has become part of the analysis. NAAF most likely will have this 4 hour meeting that took place. Many told the FDA panel that having taken this drug and grown hair, especially eyebrows and lashes they have their life back. To others they struggle with how much hair is really worth. My daughter has been on the medication for a year and her blood is tested routinely. She is pleased with the growth. This is something everyone had to decide for themselves as with all medication their are risks. 

Comment by Rascalx2 on September 13, 2017 at 12:51pm

So, anyway, I feel so much better having the hair I have. I am AU and it feels good to not stand out as the freak in the crowd but to blend in with the crowd. I am continuing with xeljanz at this time but I do think about side effects constantly.

Comment by Frrankie on September 13, 2017 at 12:50pm

Your are the problem with America. Role back 44 years DPCP is showing results with Alopecia but can't pass FDA guidlinee. Kids are told the problem is stress with the only real treatment is steroidal.
Thousands of suffers suffer from snake oil salesmen. This is the best county in the world. If you don't like it find better. 46 years with Alopecia and I still choose not be be a victim. Suck it up buttercup, you lost the election. The problem isn't just people like you but the uniparty in Congress pretending they care. When everyone cries victim hood No one listens. Sad

Comment by femmemuscle on September 13, 2017 at 10:50am

I learned a lot about this whole situation.

Not regarding the drug, but the human condition.

In WWII, people were herded in concentration camps, and used as medical experiments. 

They knew, as well as the doctors who were performing experiments on them that the drugs they were made to orally were dangerous.  Many fought and were shot during these experiments. Bayer Pharmaceuticals knew it too, and forced their drugs on them anyway.  And made Bank.

Fast foward, to the decade 2000. One young guy grows a head of luxurious hair from  taking a pill.

People see it in the news, and on the internet.  Reporters are making bank from utilizing "click bait" "catch-phrases" and "sensationalism" on the internet. Doctors are pushing the drug knowing full well, everyone is not going to have the same results, and the drug is dangerous. But they're getting  "kick-back", and the Pharmaceutical companies are making bank - and no one is fighting against it.

It's just the opposite of WWII. Folks are now running to the physicians, and swiping their credit cards left and right..

For the sake of saying: I have hair on my face, and scalp.  Voluntary, high-paying, human, guinea-pigs.

Many folks were hiding the fact they were becoming sicker, to the point of cancer..

Folks here on the forum, damn near "yelling people down" to convince others to "try the drug - it changed my life!"

Anytime someone would state something with the "voice of reason"  some members, if they could, would get in a fist fight to shut them down. I do remember one in particular.

Now, folks are finally coming to grips with the irrationality of their actions. Some never will.

I've seen the human condition in the last few years.

Crazed, zealot, angry white male and female Trump Supporters who are realizing that our new president isn't all that he hyped himself up to be.

And zealot Alopecia world members who are realizing the same thing about this drug.

It's not the zealots who were encouraging people to buy this drug - even though they were having side effects and wouldn't tell anyone - it's the ones that believed them, and risked it all.

Comment by Frrankie on September 13, 2017 at 10:13am

Over 40 years with Alopecia. The mirror never changed. I was called a skinhead at maybe 7. At 46 I am just called white. Ya I am giving Xeljanz a true shot. No side effects. I fear Alopecia related autoimmune complications more than any Xeljanz side effects. Sad

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