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Anyone have cosmetically acceptable regrowth with Xeljanz?
I mean does anyone have regrowth like Kyle Rhodes from the Yale study using Xeljanz? So far the pictures I have seen are not nearly as promising. Link below with pictures of Rhodes regrowth
http://www.cnn.com/2014/06/20/health/baldness-cure-alopecia/
Replies to This Discussion
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Permalink Reply by sadele on
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My blood work has been great. Nothing has come up to cause concern. I'm incredibly healthy as it is so perhaps that is helping. It's interesting, I have full regrowth on my legs and about 60% on my scalp. I do have very short lashes on both eyes and 5 eyebrow hairs on my left brow. It seems like it's at a standstill, but I continue to stay positive through the difficult days. I just got a phone call from the pharmacy in PA to order the xeljanz cream. I haven't hear of it working on anyone so I'm not sure about spending $300 on the tube. I have heard of the Ruxolitnib cream being bit more effective. I have also been reading more no the stem cell therapy. Apparently China is doing the procedure.. This disorder is such a roller coaster. Keep the course Football Fan, something positive will develop from this.
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Permalink Reply by 3ebdie on
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Do you know why the pharmacy in pa seems like the only one providing the topical xeljamz? Why don't you btw participate in the ruxolitinib topical trials in the US?
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Permalink Reply by Xeljanzmiracle on
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Its interesting what you said Serinaadele, about hair mattering for one's self esteem. I wore wigs for 6 years ONLY because I was worried about what others would think about me being bald. But guess what this entire process has taught me? Other's opinions about being "cosmetically acceptable" don't matter. Our opinion of ourselves is the ONLY ONE that does. That's what SELF esteem is. How we feel about ourselves. And once WE decide that no hair, patchy hair or half hair is acceptable to US, especially in the "process of regrowth," we can get to the point where we accept where we are in that process. Once I was able to come out of my wigs, let everyone know about my disease and tell them my hair was going to grow back on Xeljanz, that gave me a confidence I never had before. Even now, with about 90 percent regrowth and a few resistant spots, I tell concerned people what they are seeing is REGROWTH, NOT LOSS. Everyone new that I meet is SO HAPPY for me and is amazed about Xeljanz. All my balding male friends are interested in it and want some, lol! I tell them my condition is autoimmune and Xeljanz is for that, not male pattern baldness. But that "they are working on curing/treating the kind of baldness they have soon." Everyone calls and texts and wants to see how my head/hair looks now. No one is focused on my few remaining resistant spots. They are excited at the difference from what they saw last. I have been wearing a wig again recently because of the rain and cold and my friends ask me "What does it look like now? Is it still growing?" One male friend at my Bible meeting said "I want to see it." I said, "dont dare me because you know I will snatch this wig off in front of everyone right now!" And we just laughed! Other friends have been teasing me about the wig saying "That drug is REALLY working. Your hair got so long so fast!" I agree that it took me a LONG time to get to this point, but I'm so glad to feel FREE. Feeling forced to wear the wig because of how others MIGHT think or MIGH react was a HUGE BURDEN. I am truly myself now. I love myself as I currently am. If the Xeljanz stops working or I suffer a relapse and go back to being AU, I can handle that now. I would be disappointed, yes, I absolutely LOVE my new hair,especially playing with it, which I always liked to do. But I have learned that being "cosmetically acceptable" to myself is the only thing acceptance that matters. We have to learn to love and esteem ourselves and that confidence from WITHIN will then project outwards into the world.
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I'm not sure if its all visible. I haven't taken a picture for a month. But I can feel it of course. I will post updated pictures soon.
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Here's what I have so far..in case you were wondering why I felt I couldn't go out in public without a headcover.
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The top
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You can, but its up to you. Everyone has their own comfort zone. Congratulations on your regrowth, looks great!
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Permalink Reply by Earthsaver23 on
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"Cosmetically acceptable regrowth" is not a derogatory term or meant to be used to denote personal opinion. It's used regularly if you search on the Internet and read studies that have been performed. An example of how it might be used: Cosmetically acceptable regrowth was seen in 45% of participants who remained in the study. I've read numerous studies that utilized that terminology.
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Just because the term is used by many doesn't lessen the fact that someone made a determination as to what is "acceptable regrowth". The term means something to whoever coined it and it means something to the dermatologists that use it. And Mtran2000 already let us know what he thinks it means: a "FULL head of hair." I'm not irritated WITH HIM for copying and repeating the term, I'm irritated with whoever decided to create that phrase. Because they made a determination that a person without a full head of regrowth is "unacceptable cosmetically." That is: It DOESN'T LOOK GOOD. The intonation is negative. That is what I object to. Because a person that is bald, or has partial hair regrowth CAN STILL LOOK GOOD. That term further demoralizes and shames people and makes us feel that we should keep our heads covered or out of sight until we have FULL REGROWTH. It adds to the burden we already have. Its promotes the idea that not having a full head of hair is UGLY. (There is actually a discussion on here about that that broke my heart: "How to accept Being Ugly".) And yes, it is personal to me because that is EXACTLY why I hid my baldness from family and friends for 6 years. I wouldn't even take off my wig in the car AT NIGHT at 1 am in the morning when picking my husband up from work. I was terrified that someone would see my bald head and think I LOOKED LIKE A MONSTER. But much to my shock and surprise I started being called BEAUTIFUL by complete strangers everyday. Men especially. They stopped me on the street to tell me I was beautiful. They yelled it out to me thru car windows while driving. Guys I knew for years suddenly expressed romantic/erotic interest in me and let me know that my bald head turned them on. My husband became more demonstrative and loved to rub my head and kiss it. If I hadn't taken off the wigs, I never would have known that a lot of men and women are actually TURNED ON BY BALD HEADS and feel that a bald head is MORE THAN cosmetically acceptable, its downright desiresble!
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