Xeljanz and scary side effects

I have AU (used to be AA but has progressed into AU within just the last few months), and my doctor wants me to consider Xeljanz. 

I read all about it and the side effects and the lack of research since it's so new...

And, I'm horrified. 

It's an immunosuppressant, so you have to be careful when playing with the immune system. I read reports of people getting cancer dying from opportunistic infections (like tuberculosis or pneumonia). It really horrifies me. 

Now, other than AU, I am VERY healthy. All my tests results are ideal (not just normal). I teach yoga, do kickboxing, cycle, etc. My health is everything to me. I'd rather be hairless than be too sick to do all the things I love. Honestly, it was yoga and my yoga friends who really helped me through this difficult process. I've kind of come to accept to my alopecia and have grown to be okay with wigs. I even went on to start my own wig company! 

I'm just scared of this new drug... hair isn't everything.  

What do you think, Alopeciaworld?

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Permalink Reply by hagster on December 6, 2017 at 6:57pm

There is lots of info, discussions and other stuff about Xeljanz on this site.  Just click on All Discussions at the upper left of this page and type in xeljanz, then pick what you want to read. 

(Personally) I'm not willing to risk the side effects or start something that I will have to do the rest of my life - but many people on here are.  You will just have to decide for yourself.

Permalink Reply by bibby on December 6, 2017 at 7:33pm

Its not only the side effects that scare me. Its the word "cancer" that is mentioned as a extended risk associated to the taking of the drug. The fact that I am a cancer survivor makes the drug 100% NO GO for me according to my doctor. It will not even be considered. The other side effects of weight gain seems to be very common (even though it is mentioned as a "possible" side effect) effecting a large portion of the users on our xeljanz forum here. The drug is very new and I will wait it out for more options treatment wise. 

Permalink Reply by Return_life on December 6, 2017 at 9:07pm

Immunosuppresor are nothing new. It's been prescribed for autoimmune disease for a long time. 

I have been 10 years AU and I have been taking the medicine for a few months... i choose to continue taking it. No hair isn't everything. I had a good life... but it's much better with facial hair (I still shave my head).

It's really a personal decision. I've seen both sides.

Now obviously if u have a history of cancer it's a no go...

Permalink Reply by bibby on December 6, 2017 at 9:24pm

Yeah I reluctantly agree with you, I'd love to try xeljanz and even though I'm fully cured of my cancer any increase of poking that nightmare with a stick to reawaken it makes me shudder. I'm probably officially now kind of Alopecia totalis. 

Bizzare situation actually. I had months of chemotherapy and lost all my scalp hair , it fully regrew within 3 months of finishing chemotherapy and I mean FULLY regrew and very thick........and then BOOM !!!!!!! Every bit of scalp / beard / pubic / leg/ arm / finger / chest hair gone within 1 month for the last 18 months. Only now is my beard regrowing and eyebrow/lashes thickening back (i.e. I now have to shave my beard regularly) 

i wonder did the chemo treatment initially alter my immune system short/long term. Sorry for the rant , just trying to figure how this weird disease operates on our individual bodies. 

Permalink Reply by Return_life on December 7, 2017 at 5:31am

U nailed it. IL2 was in the past used for cancer. We know today for a fact it has an impact on alopecia. How good of an impact, well this we will know in the future but could this be an option for you? Maybe. Now if you are in North America low dose IL2 is gonna be difficult to get...

High dose of il2 is dangerous. Prp is also around the corner... u have options but the history of cancer is limitating the options.

Happy to hear about the eyebrows and beard. It's a game changer...

Permalink Reply by bibby on December 8, 2017 at 11:56am

I am based in Ireland and I have heard the research is being carried out for the IL2 in France so if there is anything positive in the future regarding it then I may be able to avail of it easier. It may take 3-5 years for conclusive info and proof of effectiveness of the IL2 on alopecia but fingers crossed. 

Permalink Reply by Ben on January 6, 2018 at 12:53pm

Hi, I'm based in ireland also and was wondering what doctor you were using to be prescribe  xenjanz thanks Ben. 

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