Alopecia World
Where acceptance is all there is!
Off the Xelganz
I have been taking Xelganz for about a year just this month my insurance approved my coverage. It has worked great on hair regrowth all over my face and body (except for male pattern baldness). The issue I have had with this drug is the numerous upper respiratory infections and chronic coughs. I also have many dysplastic nevus on my back and upper abdomen which puts me at higher risk for skin cancers.
My dilemma is I have a two year old beautiful baby girl. I love the way this drug has grown my eyebrows and some lashes back but I fear the risk factor involved with depression of my immune system. Do I give into vanity and take this drug or do I put my long term health above the risk? As of now I have stopped the Xelganz. I have concluded that my daughter needs a father more than I need two two-inch strips of hair above my eyes. I fear losing my brows and will continue my steroid injections for now.
What are your opinions on this subject? Is the drug worth or not worth the risk? I greatly appreciate all of your thoughts.
Comment
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Comment by Frrankie on September 26, 2017 at 2:24pm
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I agree. This a great site.
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Comment by hagster on September 26, 2017 at 2:07pm
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There are no authorities. Not even Derms know much. It was probably a fluke that someone noticed that a few peeps on Xelganz were regrowing hair if they had AA.
We with AA just have to keep looking at new info, sharing what we know or find out about treatments and how to manage, and caring about each other.
Its so difficult because each one of us has a different story, different autoimmune maladys, and individualistic ways of coping.
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Well my thyroid has balanced after starting Xeljanz. I do think if I had started the inhibitor years earlier I may not have developed hypothyroidism. Although I have Alopecia for over 40 years u now little about treatments. Hell I can't even say I am an authority on Alopecia.
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Not a preventative. They are for after the fact.
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My question is, can jac inhibitors save a life by preventing autoimmune diseases related to Alopecia.
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Sorry ... will finish my comment.
The question: is it possibly worth your life to have hair? Each person has to answer that for themselves.
Are their other alternatives? Maybe. Sounds like some peeps around here have had some improvement thru diet. And, at least thats a safe alternative that might help, not hurt. Snake oils, chiropractic, special shampoos, laser combs, etc will only help the sellers pocketbook.
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Frrankie - Humira is also for certain autoimmune diseases. My Derm wanted me to try it for my Granuloma, but I couldn't get past the high incidence if users getting Lymphoma (cancer). Plus my son & d-i-l are both docs (PhDs in microbiology & nutrition) and they said not too. I will note that you can live an average of 20 yrs with Lymphoma, unless the cells flip to Large B cell (?) then you're a goner. Is my life worth risking for a skin disease? Not in my book. But, thats a personal decision I had to make.
My granuloma was horrible and went to places on my body that it generally never goes. I ended up trying UVB treatments and got burns by the third time (still really low level) so quit. Luckily, went into spontaneous remission, but 6 months later AU took all my hair and I've been dealing with that since.
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Dr. Please inform me on your knowledge of Alopecia. Will your special oil help prevent other autoimmune diseases. There is evidence that the risky use of Jac inhibitors ie,as prescribed by a Medical Doctor may prevent or treat multiple autoimmune diseases. DR if you would stop defending yourself for just one post and inform me on your vast knowledge of Alopecia I would be greatful.
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Comment by Dr. Hina on September 26, 2017 at 8:07am
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Everyone is free to express their opinion so be it .... continue the defamation.
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Hugster, you are a a great source for information. I am not being sarcastic. I almost feel this thread is placed by snake oil salesmen losing $$$ to xeljanz.
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