Alopecia World
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Am I still an Alopecian????????
ok, I have had Alopecia Universalis since August 2001....not a hair from head to toe! Last March 2008 I started methotrexate for my Rheumatoid Arthritis, and 6 months later (sept 08) my hair started growing back, I now have what looks like a cute pixie cut, and was able to stop wearing my wigs in April. I have to shave my legs again, I have almost all my body hair back except for under arms and bikini line( yeah) I have eyelashes (sparse) and eyebrows. I have on tiny spot of AA over my right ear, but other than that my hair is filling in and getting longer. People that didn't know I wore wigs, have been telling me what a cute hair cut I have for summer. LOL....HOWEVER I now have an identity crisis------ am I still an Alopecian?? After living bald for 7 years, it is almost just as weird to now have hair. Believe it or not, once I accepted (tolerated) my condition, I felt unique. Now I am just another person with hair....LOL...
Yes it is nice not to have to bother with wigs, especially in hot weather, and going swimming etc. Or trying to find a bandana to match my clothes. However now I wake up with messy, greasy hair, I have to wash everyday and some how sort of try to style this fine baby hair. It came in very dark and drab. Nothing like the beautiful hair in my freedom wigs. My daughter gave me some highlights (left over from her highlight job) I do like it better now. But I must tell all of you that it is sort of bitter sweet. I never thought I would have hair again ever! and if it all fell out again tomorrow, I know I would be ok. Hair is not all it is cracked up to be. I had learned to live as a confident bald woman, who's husband and children loved and made feel special and beautiful. People admired my strength dealing with AU and always having a smile on my face. I felt strong and liked to help and encourage other people in difficult situations. I loved talking to other "bald" people and understanding exactly what they were feeling. But what am I now?
Has anyone else ever gotten their hair back after 7 years? and kept it? Do you think it will stay, or should I get ready for it to all fall out again? I feel like I shouldn't be on this site anymore, now that I have a full head of hair. I was always jealous to hear or read about other people who got their hair back, and now here Iam.
Thanks for listening, and if you have any advice, I would love to hear from anyone.
Thanks Kim Culberson
Yes it is nice not to have to bother with wigs, especially in hot weather, and going swimming etc. Or trying to find a bandana to match my clothes. However now I wake up with messy, greasy hair, I have to wash everyday and some how sort of try to style this fine baby hair. It came in very dark and drab. Nothing like the beautiful hair in my freedom wigs. My daughter gave me some highlights (left over from her highlight job) I do like it better now. But I must tell all of you that it is sort of bitter sweet. I never thought I would have hair again ever! and if it all fell out again tomorrow, I know I would be ok. Hair is not all it is cracked up to be. I had learned to live as a confident bald woman, who's husband and children loved and made feel special and beautiful. People admired my strength dealing with AU and always having a smile on my face. I felt strong and liked to help and encourage other people in difficult situations. I loved talking to other "bald" people and understanding exactly what they were feeling. But what am I now?
Has anyone else ever gotten their hair back after 7 years? and kept it? Do you think it will stay, or should I get ready for it to all fall out again? I feel like I shouldn't be on this site anymore, now that I have a full head of hair. I was always jealous to hear or read about other people who got their hair back, and now here Iam.
Thanks for listening, and if you have any advice, I would love to hear from anyone.
Thanks Kim Culberson
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Comment by Kim Culberson on June 25, 2009 at 4:21pm
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I am overwhelmed with all these beautiful words of wisdom! You have all helped me with this "identity crisis"! LOL..... I do know exactly who I am and who I want to continue to be. Hair or no hair.
Has anyone ever had genetic testing done? My Rhuematologist did some last year before putting me on medication and it showed that I have the HLA-B27 gene, which is the genetic marker for autoimmune diseases. This is an inhertied gene, and I actually have 2 first cousins(brother 25yrs old & sister 30 yrs old) with Multiple Sclerosis, their youngest brother died at age 18 with A plastic anemia, and one of our aunts has MS as well. If the worst I ever get from this gene is Alopecia, then I am the lucky one.
Anyway, just curious is anyone else out there has the HLA-B27 gene? This maybe the link to the cure!??
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Comment by Lee on June 25, 2009 at 5:50pm
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I think you will always be an alopecian...but thats good! You took it very well though. Congrats! On a side note, my alopecia started after I had Rheumatic fever...which they thought was Rheumetoid Athritis..interesting.
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Comment by Diana on June 29, 2009 at 7:32pm
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Hi Kim... thats great news - I wonder with these drugs just like the steroids if you keep taking it what happens when you stop... I was taking methotrexate for the same reason but before I had AU - almost 3 yrs ago took it for a year... be careful with the liver numbers please...... my doc tested my blood every month because of the liver and lungs.... I have not gone back to taking the methotrexate (although wonder now because of your hair growth!!!) my sister in law went thru a liver transplant and scared the "crap" out of me taking this med.... so please just make sure he is consistently checking those liver numbers.... take care and Happy Hair :-)
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Thanks Diana, yes I too have the monthly blood work to check liver function, and one came back high, although the last one was lower and they are repeating again in two weeks. I was however taking oxy codine for sciatica for a few weeks, and the acetaminophen in that med might have been what put my numbers up. From the research I have done, there is a 50/50 chance that if I stop taking the methotrexate, my hair will fall out again. I am really stuck on what to do. My arthritis is in my fingers, and they were starting to swell and twist so badly that I couldn't make a fist. Now I have full range of my fingers again, but still have some pain. I am going to wait and see what my numbers are like next week, then decided what to do.
thanks for you concern, I appreciate it
Kim
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OK everyone.....I need a pick me up!!!!!!!!!!!!!! I think my free ride on the new hair growth maybe over. I had to go off the methotrexate for 3 weeks this summer due to high ALT and AST numbers (liver function enzymes)
I have been back on and off it for the last couple of weeks, trying to watch the liver numbers. In the last 2 weeks my hair has been thinning steadily and I have about 10 or more crop circles ranging from dime to quarter size.....had kenalog shots two weeks ago in the first few that appeared. Not sure what to expect now. Having some depression....It has been about 1 full year of growth..only able to stop wearing the wig in May, but have enjoyed a cute short pixie hairdo all summer at the lake cottage...no wigs or bandanas, just my hair blowing in the wind while waterskiing and driving our new boat. OK now I am babbling on and on.... I almost wish this last year hadn't happened (the hair growth) after 7 years I was used to my life bald. I know I can go back to being bald and be happy, it is the falling out part that is hard to deal with again! Has anyone out there gone through this up and down with methotrexate? If you google methotrexate and alopecia, you get a study and it said that once alopecians who have had hair growth are taken off the drug 50% keep their hair and 50% loose it again.
any comments would be appreciated
Thanks Kim
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Comment by Misty Boggs on September 4, 2009 at 1:51pm
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Hey girl..thanks for adding me as a friend! I would also say yes, we will always be alopecians. It is so unpredictable though...sometimes I just wish my body and immune system would just get back on track and quit attacking my hair. Its like we have no control over it at all...thats the hard part for me! my spots grow back and another one pops up somewhere else. its a never ending story and i am trying to make the best of it but its really hard to do. Well if ya ever want to talk...i"ll be here!
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Thanks Misty, it is just nice to know that we are not alone with this stange disease! It is hard not to feel like you are the only one going through this, so it is good too draw strength from everyone on this site.
thanks again
Kim
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Comment by Mary on September 5, 2009 at 1:33am
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Kim - I'm just back from a trip and catching up on things....I just want to say very quickly that I hope you're feeling better, and tell you that - for me - the best course of action has been to just accept this new bald me, and get the heck on with life. I've been much happier since I stopped thinking about growing hair and just started going out bald. I know it's not for everyone, but it has worked for me. Hang in there, Mary
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Thanks Mary, you are right, I am not going to worry about what happens....it is,what it is! LOL :)
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