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Hopeful after a visit to Cleveland Clinic
My reasons for writing this are to share my experience and give others hope and encouragement. I have not felt this hopeful for years, but I think there are reasons to hope now. I have had AU for about 5 years. I was fortunate enough to get an appointment with Dr. Wilma Burkfeld at Cleveland Clinic last week. She is a dermapathologist and specializes in alopecia. I asked her if she thinks that there is something that will successfully treat alopecia in every case, and she said yes. She said that alopecia is not caused by stress, but it is aggravated by stress. My alopecia first manifest itself when I went through a very traumatic event. She thinks it it important for me to decrease my stress. She wants me to improve my nutrition and exercise more. In fact, she wants me to lose the 50 pounds I have gained since this nightmare began. She ordered several blood tests. She said these tests will let her know if I am a candidate for Xeljanz and we will discuss the possibility of getting on it when I go back in mid March. She said that they are ready to prescribe it, but getting insurance to pay for this very expensive drug has not been successful yet. She prescribed Allegra ( possible connection with allergies), Rogaine, Clobetasol, and Ketoconazol shampoo (for my scalp; I have no hair) for me to begin my regimen.
I would highly advise others to get an appointment at Cleveland Clinic. I'll update this discussion after I see her again in March.
Good luck to everyone!
Replies to This Discussion
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Permalink Reply by Merry on
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Em, I don't think Dr. Burkfeld was talking about Xeljanz in that conversation. I had explained to her that cyclosporine works to grow my hair, but adversely affects my kidneys. I asked her if the fact that one thing worked for me made her optimistic about something else would work. She said that it did. Then I asked if she thought that everyone had something that would work, and she said that after having worked with alopecia for so long, she did think so.
I have tried kenalog injections, DNCB, cyclosporine, orencia infusions, plaquinel, cellcept, and vytorin. She didn't say anything about requiring that patients have already tired other things, but it would help to convince the insurance company to cover it.
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Any updates? I'm in Cleveland too. Have AA and am losing head and body hair now, potentially a TE reaction from prednisone, cortisone injections and topicsls all at once over the summer.
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Lucky you!!!
I hate Canada... U guys from USA are so much more advanced than us. Obviously u still have the $$$ hurdles but at least it's a piece of cake to get that prescription. Where do I get i t if am Canadian? Crap...
All the best for u, I hope all we be better and ull get ur hair back... Because it's not only hair, its pleasure, confidence,happiness, dating, etc
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Hi - I am just reading this post now as we are new to AA. May I ask how things went for you since 2015?
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Don't you just love the "it's only hair" comment? Can you imagine saying to someone with psoriasis, eczema, vitiligo, "It's only skin." Idiots!
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