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Dunno where I fit in...so devastated.
Hi to all. I am 39 and have ankylosing spondylitis (autoimmune disease in which my spine is fusing, pain, etc), fibromyalgia, thyroid disease, and psoriasis. Since I was 18 I have had bouts of hairloss. Sometimes so bad it would fill up the sink from bottom to top. BUT it was diffused and no one could ever tell. I always had enough hair for 5 people. I led a normal life, had a career, family, etc. A couple of months ago I got really ill with my AS and had to begin biological drugs, Enbrel was the first. Immediately my hairloss subsided. So I thought all this time it wasn't my thyroid it was the inflammation in my body. After a few weeks, the Enbrel stopped helping the pain and I had to switch to Humira. After 2 injections my hair started coming out in handfuls. It literally filled up a sandwich bag when I shampooed on Monday. A trip to the dr shows that my thyroid levels are good, the inflammation theory is out the door, but what it is? The Humira stopped my pain in my spine, but I feel like a zombie. I can barely function, losing all my hair, the drs are stomped, and I can't find anyone in my situation. I am so exhausted from drs, meds, and this rollercoaster ride. I want my life back. This has taken such a toll on my family. I know I can do all things through Christ but I am really struggling right now. Would love to hear from anyone who might be able to relate. Hugs and prayers.
Replies to This Discussion
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Permalink Reply by Chefpam on
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There's only one more option and it is Remicade which requires in house infussions. I am just scared of all of them because I have friends on such with liver failure now. I was due my shot on Monday and didn't take it and woke up this morning with back and chest pain and can barely bend. I wanted to give it awhile and see if it is causing the hairloss but I don't know how much pain I can stand. It just hit me this morning how sick I really am!! I am in the process of getting a new rheumy also and it will be awhile....my other one made jokes at the hairloss and pointed at my husband who choses to be bald and replied, "well you don't look like that." Thanks for your reply....without prayer and family I don't know where I'd be. I have a promise of a new body one day and that keeps me going but this pain is just really scary!
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LOL....I like someone who dances to the beat of their own drum! Thanks for making me smile. I am pre-tay strong but admit, I am starting to crumble a bit.
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Thanks again. I can't sew a button on so you are not alone! Sorry, I don't have Skype and no clue about MSN...yes, I'm lame like that.
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Oh wow Susan!! thanks for explaining and it's so good to have someone to relate to. Because I have hypothyroidism and my hairloss has improved when changes have been made to my meds I wanted to believe it was thyroid related. Then when I started Enbrel for my AS it improved so I thought bingo-it's inflammation. Then when I had to switch to Humira it got WORSE than ever so now I am back to square one. I have lost so much hair in the last week that I don't look like the same person. I don't know what to do. Should I shave it off because I can't even deal with it? Will it stop when I get proper meds? I dunno!!!
Regarding the AS, I was told I HAD to take a biological in order to stop the progression of the disease. I saw a pic of a man whose had progressed to where his head was literally hanging off his shoulders. But now I feel like a zombie, going bald, memory loss, anxiety, etc. I also know people who now have liver failure after using Humira. My husband wants me to stay on it and just thinks the hairloss will be ok and everything else. BUT it isn't! I feel like I am losing my mind. I can't believe you only take the Indomethacin. Does your dr say this will stop your progession? I have almost no mobility in my neck at this point....just feels so overwhelming. I have given up sugar, changed my diet, take my vitamins...nothing is changing.
Do you wear wigs all the time?
To Karen: I know I will overcome this some day but right now seeing the clumps of hair is very difficult. I have tried tons of wigs and nothing looks right on me....
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Thanks for your reply. Well, right now all I can do it sit and wait UNTIL I can even get into the new rheumy. I belong to the AS foundation forum and really haven't read about anyone using Indocin at all. Most all of them are on biologics. I would rather take some alternative other than biologics simply because I don't want my immune system suppressed. I am trying to hold off on the Humira injection until I get in, but the pain is returning. I have a child to take care of and not getting out the bed isn't an option. I do practice stretching exercises daily for my neck but even so, have lost almost all mobility. I wish I could just forget about the hair thing but living the house bald really isn't an option at this point, especially since 3 weeks ago I had a full head of hair. One day at a time I suppose.....
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Permalink Reply by Sonya M. on
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Hey~ I too am on Humira. I have rheumatoid arthritis. I was diagnosed w/ it 3 years ago. My hair started falling out by the handfuls too- in January. I am totally bald now. It SUCKS!!!!! I also have hypothyroidism. My drs say that with the RA and thyroid problems, that I have developed the AA. I don't have my eyebrows. I'm waiting on my eyelashes to fall out anyday. I try to hold my head up high and deal with this. I just don't feel very pretty. It's nice to have friends on here that I can relate to!! :)
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WOW, sounds like we have a lot in common. Did you start Humira after the hairloss? I have battled this for years but this time my body has gone completely crazy. I am not able to teach, can't do anything around the house, mostly stay in....just very down because this is not who I am!! I am trying to face it and just wish it would all go ahead and go instead of the daily torment. I am not feeling very attractive either, TO SAY THE LEAST. No one has really seen me since this all started except my family....So nice to meet you. BTW, does the Humira make you feel funny? Do you inject every week? Would love to chat. Are you on Facebook? Thanks for replying...it's nice to know we are not alone, isn't it?
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Hey! Yes- I am on Facebook- Sonya Somers Mullis is how I am listed. I started the humira about 2 1/2 years ago when nothing else would help with the RA. I give myself injections 2 times a month. My hairloss has been gradual- until Jan. when it REALLY started falling out. Like I said, I am completely bald now. It stinks. I teach Kindergarten and wear my wig every day. I am like you- I wish it would go away. I feel very unattractive. Look me up on FB, it's nice to know someone w/ such close similarities like me!! :)
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I am jealous of you already...I am on sick leave and miss teaching so bad. I will look up you!! So glad to have found ya.
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Permalink Reply by Auntie Sheila on
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I am in a similar situation! I am 33, and I have been on Humira for 2 years for RA (diagnosed with RA @ 15yrs). I had gotten to where I could hardly walk again, so started Humira with my Methotrexate and Relafin. I was on all three for about a year, then got off the Metho due to sores all over, esp. fever blisters on my mouth. I felt much better after getting off of that! The RA doc added Hydroxychloroquine. Then, another year later, I lost my insurance, so decided I should try to change my diet to control the RA (I also went through a divorce during this time). I stopped eating dairy and gluten (wheat), added magnesium for stress relief and digestion, added probiotics, and Cod Liver oil (All with Dr. approval).
A month later, my internal med doc said I should try to get off the hydroxychloroquine. One week after stopping it, I lost chunks of hair (which looked to the derm. doc like I had alopecia ariata--which I have never even had thinning while on any of these meds, and he thought the stress of the divorce may have caused it, not stopping the med.). Of course the internal med doc and pharmacist thought it was b/c of dropping that med. They continued me on Humira, and found out that my thyroid was crazy high. I don't know if I had thrown my body into some sort of shock, or what happened. Within 2 wks, my hair was so far gone that I shaved it and bought a wig. Now, 4 mos. after this all started, the RA doc has decided that the Humira may have caused this in the first place! and he asures me that it will grow back. The dermatologist doesn't think so. I continued to lose everything.
My son went to see his dad every two weeks this summer, and it was pretty theraputic for me, I guess. I hadn't really been able to cry with him there, if I was upset, he would freak out. Let me just say that this has been a nightmare, but I think I'm done crying! The worst part was that I bought some synthetic wigs, that I love the cut, and get complimented on my new cut all the time, but the heat here in NM is so bad that it ruins the wigs! I wore a hat a lot this summer. My church family has been very supportive, I even get teased about wearing my Gilligan's hat to church! I was so ready to start my new life without my ex, that this has been hard to cope with the thoughts that I may not ever find love, then I remember that the Lord is protecting me from falling in love with another shallow man! Praise Him for that! I actually was on the substitute teacher list at our high school, and quit a month early last spring b/c of fear that someone would pull my wig off!
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