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Comment by TexasGirl on August 17, 2017 at 8:35am

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.

Comment by TexasGirl on July 22, 2017 at 8:14pm

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.

Comment by TexasGirl on April 24, 2017 at 10:04am

Only hair on my face and long ones that I never had before but at least they're blonde. Nothing on arms, legs, eye brows or lashes. I do have some hair coming in down there but sparse (kind of like my head). I have just a few extra hairs under my arms (like 3 extra). Still not needing to shave or wax. I will do some blading for my face to get rid of the long excessive hairs on my face at my next facial visit. That's it. Trying my hardest not to get discouraged:)

Comment by loriann on April 23, 2017 at 10:29pm

Don't give up yet give it at least a year everyone is different ...are you getting any hair on your legs ..eyebrows..underarms?

Comment by TexasGirl on April 23, 2017 at 8:45pm

Oh and no RA pain and feeling great about my RA.

Comment by TexasGirl on April 23, 2017 at 8:44pm

Ok I've been on xeljanz 11mg for 3 months now and two weeks ago started methotrexate 2 pills versus the 6 weekly. I have 2 inch dark hairs covering about half of my head. The problem is that I don't feel like it's lasting hair. It's sparse and very fine and I don't feel like it's really growing. My head still looks very bald with some little black hairs. I'm getting a little deflated on this drug but going to stick it out as long as possible. Btw no side effects except slight headaches at night and a little light headedness but nothing that's bothersome. All my blood work is coming back normal. Does anyone know how long it takes? When should I just give up? Should I add anything like rogaine? Not sure what to do this was my last hope. Thanks!

Comment by TexasGirl on April 4, 2017 at 12:19am

So I am 2.5 months into the Xeljanz XR and I am seeing lots of hairs all over my scalp. Some are longer and darker and some look they are the peach fuzz just starting. There are still smooth spots on my scalp so as much as I would love to say my whole head is growing, it's not. I would say maybe a little over 50%. My eyebrows and eye lashes are not showing any signs yet. I have super long hairs on my face which I had never had before even before Alopecia. I have a bunch of pimples on my scalp which is super strange b/c I've never had that as an issue. A side effect I have noticed is an occasional headache here and there. I take the meds at night so I can fall asleep and not worry about a headache. I can not stop touching my head and wishing and hoping that it will grow back but this is super slow going. My RA pain is slightly back, not like before but just here and there so my doctor recommended adding the methotrexate. Not sure what to do as one of the side effects is hair loss but I might try it. Anyone use both? My doctor thinks it might enhance the effects.

Comment by loriann on February 27, 2017 at 9:06pm

Keep the faith you will see more hair .... still looking to get meds hoping for a trail study only way I can get meds ... if anyone knows of any study's pls let me know

Thank you

Comment by TexasGirl on February 27, 2017 at 7:02pm

Just a quick update. I see lots of little white hairs and some have turned dark (maybe a quarter of an inch and fine). They are not everywhere (maybe 50 percent of scalp) , mainly on top of my head. It feels fuzzy but not like I was hoping. It's now been about a month and a half on the medication. No side effects (maybe a headache here and there), blood work good. I have fuzz all over my face but no substantial hair like I had before (ie I used to wax my upper lip and chin and there is no need for that yet.) No eyebrow, eye lashes, hair under my arms, on my arms, or legs which I was kind of hoping to have by now. I wonder if other people have experienced the head hair without the rest of the body hair. I know it's only been a month and a half but I'm getting impatient. I do hold hope because most people don't see anything for the first 3 months and I was seeing little hairs at the 2.5 week mark. Oh and my pain is still gone...almost forgot all about it:) I'll keep you posted.

Comment by TexasGirl on February 16, 2017 at 7:48am

I'll be seeing the doctor tomorrow and hopefully getting my pills. I hope it hasn't been too long without it. I will keep you updated. I still have the little tiny blonde hairs but they aren't everywhere and some are slightly longer in some areas over others. I may just be reading too much into it but this is the most hopeful I have been since this all started.

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