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Im starting Xeljanz for alopecia areata
Replies to This Discussion
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Permalink Reply by hagster on
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Have you read the other posts about Xeljanz. If not, please do. Lots of info as to studies, cost, losing hair if you stop taking, etc.
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Permalink Reply by Alopecia612 on
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I was just approved today and will begin xeljanz soon. I'm very nervous about the side effects, but I am going to worry whether or not I take the drug so I might as well try. I wish there was more info out there from people later, after they stop or a year, two, three after they begin. How long do you stay on this drug?
I wish everyone the best of luck - I hope one day Alopecia can be a thing of the past.
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Hi Kara,
I'm just my third day into xeljanz- so far so good in terms of no side effects though I've been warned it can take a while to kick in with the hair growth. I am just really hoping i am a responder as I had to really work hard to convince my hubby to let me get it (expensive, possibly needing to be on it long term, etc). I am 34, got two little kids (5 and 3) and just really want to have my hair back so I'm not worrying about wigs, eyelashes etc and just get to be a normal mum to them. I'm from Sydney Australia. My first bout of AA happened ten years ago but resolved within 3 months and was minor...this time not so fortunate- lost about 95% of my scalp hair, my eyelashes are going, some of my body hair is going, so even getting my lashes back would be so great. I also have hashimotos which has left me very skinny so without a wig and make up i look like a cancer victim which is hard cause you don't want to have everyone thinking your about to die and being all awkward around you..... Also I think it scares my five year old daughter a bit as she is old enough to know something is wrong.
I really hope it works well for you (and for me). Best of luck with it, if it works then it will be an amazing breakthrough for me!
Frida
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Frida! I am also finishing my 3rd day of Xeljanz. Even though you're half way across the world, I feel a little better knowing someone else is starting this with me! Thats amazing that you have little ones! I am getting married in November. I'm hoping to not have bald spots by then. My AA started when I was 27 and was going through a time where my anxiety was high. I'm hoping that I can get this into remission. Girl..... this shits hard! We should go back and forth and tell each other the most ridiculous things people have said to us about our "hair styles." I bet we could get a good laugh about it. I'm sorry it seems like it scares your daughter... I don't think that is the case. I think she is reading into your emotions, not how you look at all. All see wants is her mom! She's not scared, just concerned for you! =)
lets have the positive mindset, this WILL work for us!! lets keep in touch. my email is karaholly@gmail.com
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For sure! Ha thats so funny you're on your 3rd day too. Yeah I'm trying too keep the mantra IT WILL WORK FOR ME going through my head. Its funny- have to wear wigs now, in the early stages hats but some people are just like- did you go to the hair salon- I'm like "my hair just magically grew like 3 inches..." but for the most part people only really have noticed the weight loss... Which at first was like "girl how are losing those pounds" to now "are you like sick".... Yeah Alopecia is probably the hardest thing I've had to go through, some of it is vanity but a lot its just feeling so out of control of the situation, like why is my body doing this to me? We will keep in touch! I am confident we will be responders!
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I have also heard that some people have leaky gut syndrome... and your body is unable to absorb nutrients properly, which can also lead to hair loss. give that a google and see if you have those symptoms too!!
people can be so cruel! right now I am able to hide my spots because it's mostly going on towards the back of my head, but for a long time I just had a shaved head because it got to the point to where i looked like smeagul from lord of the rings. I kept it shaved for about 7 months then it kinda slowed down and i have been able to grow it out a bit and change my hair to style it to cover. when i initially had to shave it i said F it and just went out without a wig. it was hard, but mostly for other people not as much for me. some guy asked me who paid me to do that, someone else asked if i purpously shaved only some of my buzz cut to my scalp... and then my ex boyfriend told people i did it to get his attention (whaaaa...??!), others said I went "britney spears crazy," which was a mean thing to say but did give me an awesome idea for a halloween costume! i wore shorts and a sweater and ran around with an umbrela while my nephews chased me with cameras =) i have found out that humor is the best way to deal with this! woo hoo go day 4!!!
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Frida - did your doc do the lab work to diagnose hashimotos? it takes a very specific test, not just the usual tsh, t-3 & t-4. i'm asking because you gain weight with hashimotos because of sluggish thyroid function. its graves disease where you lose weight from an overactive thyroid.
you might want to investigate further about your weight loss to see what really is going on.
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Yeah I have a very strange version of hashimotos where my hormones are still within workable range but my immune system has attacked my thyroid to the point that it's full of holes... it's weird - but clearly my immune system is a bit confused. I also have a very rapid heartbeat which my immunologist will be looking into shortly to see if that is autoimmune related.... joy... Kara - ha yes I feel like doing a bit of a crazy Brittany sometimes just to see how everyone reacts - thankfully I've managed to wig myself out so only the closest of the close know the extent. Prob with mine is that my alopecia has only left a tuff at the top and around my ears hence the bald is shiny bald so it doesn't even loook like a Sinead O Conner do- just a shiny bald head do... I think if the Xeljanz works great, if not then I'll have to get cool with idea of being a out and about baldie!
Hopefully though i will be a responder... fourth day in and all good (no hair but no obvious side effects either!) positivity positivity positivity!!!
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Good Luck. Hope it works for you.
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Permalink Reply by Alo-mom on
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Contact Xelsource and speak to them about receiving the drug at no charge based on income. My daughter has been on it for a year and has good success, that being said the density of the hair strand is not that of what she lost 5 years ago. Her lashes are back, not as long and her eyebrows do look good. Her blood work has always been good, thank goodness but there are risks. She recently told me she is having some shedding, that made me sad. I know in my heart that if she stops the medication the hair will fall out.
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Thanks Alo- mum, unfortunately in Australia I don't think we have access to xelsource down under. I could try and email them asking but doubt I'd qualify. In Australia we havve pretty good health care, with RA you can get Xeljanz for quite a reasonable price but it does cover Xeljanz for any other condition as yet. My immunologist said if there was anyway he could stretch the truth and say I have RA he would but alas my joints are perfectly healthy atm so I have to fork out the big $$$$. It's tough - people seem to classify alopecia as cosmetic but it's an incredibly debilitating condition for a lot of sufferers.....
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