Karaholly
  • Female
  • Newport Beach, CA
  • United States
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Karaholly's Discussions

Im starting Xeljanz for alopecia areata

Started this discussion. Last reply by hagster on Tuesday. 16 Replies

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…Continue

 

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hagster replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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."
Tuesday
Karaholly replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Tuesday
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Tuesday
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 13
singh replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"Hi, can you tell us the price of xeljanz in Australia ?"
Aug 13
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 13
Alo-mom replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 12
Lavonne Sandberg replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"Good Luck. Hope it works for you."
Aug 11
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 11
Karaholly replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 11
hagster replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 11
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 11
Karaholly replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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.…"
Aug 10
Frida Rupert replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 10
Alopecia612 replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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…"
Aug 10
hagster replied to Karaholly's discussion Im starting Xeljanz for alopecia areata
"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."
Aug 10

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Relationship Status:
Engaged
About Me:
Hi! My name is Kara. I am a 31 year old female. My AA started at 27, 4 years ago. I lost almost all my hair. It's been a devastating journey but I'm staying positive! I have about 1/3 hair loss - 1/2 constantly. Always falling out then coming back but by the time it comes back in the spots, I have new friends all over my head in new areas! I've tried injections, squaric acid treatment, creams, prednisone (made me a crazy person I will NEVER take it again,) etc.. I recently had an appointment with UCI. I got a 3 month supply of Xeljanz 5mg twice a day. Apparently insurance companies will only give one patient one three month supply once a year. I'm hoping when I get married in 3 months I can get more under my new name, then more in the new year, then I need to find a creative way to find more until I can get it again. My dr said I have about a 65% chance of it working. If it doesn't work she said I'm a great candidate for their trial program, but I cannot take xeljanz while doing the trial. I'm hoping the xeljanz will work for me but I am extremely worried about the serious side affects of this medicine, yet I am desperate to have my hair back! I know, it sounds ridiculous, but those of you on here who know what I've been through probably understand. I hope my story and experience with this medicine can help! Good luck to each and every one of you. My heart goes out to all of you!
Do you have alopecia?
Alopecia areata
Are you age 18 or older?
Yes - I am 18 or older

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