Kim Culberson

Female

Jacksonville, New Brunswick

Canada

Profile Information:

Relationship Status:
Married
About Me:
Alopecia Universalis since 2001, Married to Herb for 26 years. Two children- Jenna age 19, Tyler age 11. My husband and I operate a potato & grain farm. I also sell Creative Memories scrapbook supplies, and work part time at the Upper River Valley Hospital as an Administrative Officer.
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall:

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  • Kim Culberson

    It's been awhile since I've been on AW. I was AU for 7 years. I started Methotrexate 0.7mg once a week for Rheumatiod Arthritis and within 3 -4 months my hair started to grow back. That was 4 years ago this coming summer. Yes I know...doesn't sound right but that is what lets my hair keep growing. If I miss a few weeks of my injections I develop the typical dime size bald spots anywhere from on the sides or top or forehead or back of my neck at the hairline. I then get Kenalog injections into those spots but it takes about 7-8 weeks to see the fine baby hair growing in. My Dr's still are baffled and in awe that I have my hair back. There has to be something to this suppression of the immune system and hair growth. If you don't have Alopecia and do take methotrexate, it usually makes your hair fall out. If anyone else out there has had the same experience let me know. I now feel like a traitor to my fellow alopecians. They were a long 7 years but I had really grown to accept my baldness and it became part of my identity. Sort of made me unique :). If I lost it all again tomorrow, it wouldn't really bother like it did the first time.
    I think I posted my story before? But got alot of negative comments back from people who didn't believe me. Truth is ....I take my methotrexate and my hair grows...,I stop it and it falls out again.
    I am still proud to say "I have Alopecia"
  • Maudy NL

    Thank you Kim for your reply.

    I sort of twisted my doc's arm to get MTX. Fortunatelly I am treated in a Academic hospital, where doctors in training, professors and regular doc's work along together. They like to try something new and get all the trainees to get a new experience. In the end I had two regular doc's, tree trainees and a hot shot professor in the room, just to decide if this was all a good idea.
    Now I left 7 tubes of blood and a urine sample behind to test whether I'm fit for the MTX.

    The only thing that frightens me is the frequency that I fall ill. No flu escapes me, no cold passes my door.... Tricky with the MTX, for then I have to stop using it to fix myself up again.
    IF my hair starts growing, it will fall out more than once a year due to the period that I need to stop.
    Well we'll see.
    The other thing that annoys me is the fact that I can hardly ever drink a glass of wine anymore.
    Not that I'm a heavy drinker at all, but I do like to drink some with my diner in the weekends. Too bad that.

    We've decided to start this, but on such terms that if it's getting in the way of anything that resembles a normal life, I will stop immediately.
    It must be worth it.
    So no uncontrollable stomach sickness, no headaches and no other inconveniences that make my life misserable.

    We'll see. I'm not hoping for anything, just trying a last resorce and be contented if it's not working.

    Next week I'll start a test dose, and the week after that I'm in for it!!

    I'll keep you posted.
  • dreamscometrue

    Hi Kim, 

    Read your story.  I've had AU for just about 30 years now.  I've got all the common autoimmune disorders, food allergies, asthma, and now have been diagnosed with RA.

    I've been fighting to avoid biologics and DMARDS, but now I can't fight anymore because my symptoms aren't getting better.  Not getting worse just not better.  I've done quite a bit of research on meds for RA and DMARDS and biologics they say work best, and strangely, work for AU as well.  

    I've recently been Rx'd Methotrexate 10mg a week and I'm expecting some hair growth.  I think the correlation and bottom line is internal inflammation.  If they can just figure out what triggers internal inflammation and the coordinated response to which parts of the body I think the disease can be cured.  Autoimmune and Inflammatory responses from an overactive immune system.  You'd think having an over active immune system we can fight off anything huh?  Lol, this disease is indeed a mystery but one I hope can be solved