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
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!!
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"
Hi there!! i am in Fredericton and trying to do a fundraiser here end of February! Looking for as many Alopecians as possible around the area to come out and support and bring their friends and family! Let me know if you are interested! :)
Hi Kim,
Thanks for adding me as your friend.
I enjoy talking to everyone on here.
Makes me feel alot better.
I guess it gives me inner strength.
Take care.
Hi Kim- thanks for adding me as a friend! I read your blog, and I definitely know the frustrations of taking medications for alopecia. I took prendisone pills on and off for a year, and although they helped my hair grow back initially, my hair would always fall out worse once I went off of them. You are certainly not alone in your alopecia journey :) I am in the process of losing all my eyebrows and eyelashes, but I try not to let it get me down too much....I figure that I'm healthy otherwise, so who needs eyebrows anyways?! ;) haha. Try to keep smiling and staying positive :)
-Natalie
HUGS! Thanks so much for your post. You an I do sound very similar in our "stressors' and out lives.. Some days I want to quit and give up others I am so glad to be alive and yes- I would gladly give up (did) hair to have my sons !!! Being a mother I beleive it the ONLY thing that has kept me sane and alive all these years of the ups and downs life spins you on.... (even tho it was stress overload) I would not trade it for anything.....thanks again. Hugs!
Thanks for adding me as a friend. Yes, I did have some hair growth when I was pregnant with my son Michael. I grew hair (a patch ) 6 weeks later lost it all. I got pregnant with my daughter, and grew some hair, and eye lashes and brows, but it to fell out. My email is grwest13@msn.com. Feel free to email me anytime. Have a wonderful week.
WOW...thanks everyone for welcoming me....I haven't had much time on the computer lately....My daughter is Miss New Brunswick (in Canada) and we have been travelling the province to alot of events and functions. Her reign ends July 29th. It has been so much fun travelling with her. I was told that I would never get pregnant, but being the strong willed person that I am, I just couldn't accept that diagnosis, so.....
thanks to the miracle of science and the invention of Invitro fertilization, my dream of becoming a mother came true!!!
I knew she would be destined for great things and as she turns 19 in a few weeks, I am proud to say that she is AMAZING! I will post some pic's.
This beautiful child has helped me so much with my own self esteem. We look very much alike, and both shared the same long blonde beautiful silky hair. When I lost mine, she wanted to shave hers...of course I wouldn't let her, but she continues to encourage me by telling me that I am still beautiful in her eyes and to me that is all that matters. As the years go by (as a bald woman) I have come to ACCEPT this diagnosis. I can live without hair, and thank GOD everyday that I don't have to live without being a MOTHER.
Most days I feel like an alien or freak...frustrated that I can't do anything to change this. Other days I think what the H...
who cares about hair. I love not having to shave my legs or underarms...although can anyone tell me why I still get this stupid facial hair on my chin???
anyway...sorry to ramble on....it is great to know that I am not alone on this wierd journey of baldness....
Kim
Hi Kim, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us. Cheryl, co-founder
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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
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.
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"
I just tried sending the info again!
hey, i tried emailing you but it didnt work!
Hi there!! i am in Fredericton and trying to do a fundraiser here end of February! Looking for as many Alopecians as possible around the area to come out and support and bring their friends and family! Let me know if you are interested! :)
Thanks for adding me as your friend.
I enjoy talking to everyone on here.
Makes me feel alot better.
I guess it gives me inner strength.
Take care.
Thank you for the friend invite! Look forward to chatting with you. I enjoyed your profile pics....beautiful family! :)
Back to work- but then ahhh... and three day weekend! yahoo.
Enjoy the rest of your day!
Heather
-Natalie
thanks to the miracle of science and the invention of Invitro fertilization, my dream of becoming a mother came true!!!
I knew she would be destined for great things and as she turns 19 in a few weeks, I am proud to say that she is AMAZING! I will post some pic's.
This beautiful child has helped me so much with my own self esteem. We look very much alike, and both shared the same long blonde beautiful silky hair. When I lost mine, she wanted to shave hers...of course I wouldn't let her, but she continues to encourage me by telling me that I am still beautiful in her eyes and to me that is all that matters. As the years go by (as a bald woman) I have come to ACCEPT this diagnosis. I can live without hair, and thank GOD everyday that I don't have to live without being a MOTHER.
Most days I feel like an alien or freak...frustrated that I can't do anything to change this. Other days I think what the H...
who cares about hair. I love not having to shave my legs or underarms...although can anyone tell me why I still get this stupid facial hair on my chin???
anyway...sorry to ramble on....it is great to know that I am not alone on this wierd journey of baldness....
Kim
I've had au for many years! How are you doing with it?
LeslieAnn
Welcome to a great place! I enjoy meeting others who can relate to all the issues we face daily.
Again,
welcome!
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Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.