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Xeljanz XR
Today is my first day to try Xeljanz XR. I will try and blog about my experiences to hopefully help others. About me, I'm mid 30's married with a young child. Lost my hair all over (Universalis) twice in my lifetime, this being the second. The first was when I was 11 years old. Miraculously it all grew back after 3 years of no hair except my arms and most of my legs which I did not complain about one bit. I was pretty much alopecia free for over 20 years and NEVER thought it would happen again. Well, it did about a year and a half ago and it hit me like a mack truck. I put on so much weight from depression and not knowing how to work out without hair. But I'm back, I decided I wasn't going to let it rule my life and I'm taking it back. I've been working out and losing the weight I had so quickly put on. I have researched Xeljanz and finally got a hold of some today. I am worried about the side effects and worried that it may not work but I am going to see it through for at least 6 months and/or until my supply comes to an end. I will not give up on having my hair back. I love my hair and miss it so much. I must say I enjoyed my hair throughly while I did have it as I truly appreciated having it. So, I just took my first dose. So far, so good...wish me luck:)
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Comment by TexasGirl on July 22, 2017 at 8:14pm
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I just finished my 4th bottle even though it's been 6 months since I started. It's been tough getting the medication. I have had no issues with the medication or my bloodwork. Well, maybe some slight headaches here and there and some fatigue but I also have been taking Methotrexate. So as far as hair goes, nothing on the eyebrows or eyelashes:( I have some hair on my head that continues to grow and I have some slight new growth, typically when I get the new bottle of xeljanz. It's not much though, maybe 25% of the head but I still look bald. I have a few hairs on my underarms and down there but nothing else. I have found a stray hair here and there on my legs and my face is covered in fuzz and a few long chin hairs. I have found a new urgency to finding something that works as I recently found a spot on my 3 y ear old sons beautiful full thick hair and it has utterly devastated me. I pray every day that he doesn't go through what I have gone through. I have even decided to not have any more children with fear that I would have to go through it again. I think that if I had the xeljanz more regularly and possibly a higher done than the 11mg/day, I may have better results. I am planning to call Dr. King's office and see if they will see me or let me know what the typical does is that they give their patients that show the same amount of regrowth that I have. My rheumatologist is not familiar with alopecia so we are winging it together.
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I am now taking methotrexate 6 pills once a week along with xeljanz XR once daily. I see some little fuzzy hairs but I've seen them before so I'm not super excited. It's been frustrating to not get the growth I was really hoping for but I don't want to give up specially since I've seen people take higher doses of xeljanz or for longer periods of time and get more response. So I will keep trucking and in the meantime I'm trying to find a dermatologist for my son. Not sure what they can even do for him since there doesn't seem to be a cure and since he has this so early it will most likely advance to unicersalis like mine. I am super worried for him and how this will effect him. I know it was very tough for me growing up with it I can only hope he is a stronger person than i.
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