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Please HELP
Hi, i've not been on here for a long time now mainly because i have been struggling to cope with my alopecia which is at 90% scalp loss, total beard loss, both top lids of eyelashes gone and half an eyebrow remaining as well as a spot on my stomach which i'm sure is alopecia.
The discussion title HELP is exactly what i need because just when things couldn't get worse for me they drastically have. I have developed white spots on my hands which are a milky colour and are spreading. My dermatologist didn't want to confirm with me, maybe because i am already stressed due to my AA/AU?, but it's most likely vitiligo. In addition to this i have developed an eczema type rash and also at times my scalp and face have become extremely itchy and when i have touched these areas i have developed inflamed bumps on my skin similar to when you get stung by a nettle plant, i think the medical term for these are hives or nettle rash.
The worrying thing for me is that all these conditions are some way or the other linked to my immune system attacking my body. My question is if anyone has experienced these problems together or any advice would be highly appreciated, there must be an underlying problem which needs addressing, maybe some other illness or allergy which is causing my immune system to attack, i am currently on steroid shots every 4 weeks and some steriod cream for the vitiligo on my hands, please help, thanks
Replies to This Discussion
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Permalink Reply by Return_life on
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There is no scientific evidence for anything that could cure vitiligo to my knowledge.
People with alopecia have higher risk of developing other autoimmune disease. That's why I find it funny when we say we are healthy but don't have hair...
My suggestionto you... u didn't say ur age but I assume u are young. I would try to get on a biologic. I know it's an autoimmune suppressor but ur immune system... well is not the best let's say. Secondly I really don't know if it would helps but try to eat very clean. Example paleo or anti inflammatory diet. Alopecia is not fun and vitiligo is hard to deal with also. U have to build a thick skin... best of luck. We all need it brother
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Permalink Reply by Xeljanzmiracle on
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I wonder why your dermatologist would not confirm the vitiligo. Where do you live? You need allergy testing and probably a new dermatologist. Xeljanz, a biological, can help you regrow your hair and I believe it helps with vitiligo also. Again, where do you live? Someone on this forum may be able to suggest a better dermatologist for you.
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Permalink Reply by Amr1 on
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Hi xeljanzmiracle, thanks for your response, im based in the UK and the dermatologist i am seeing is supposed to be good. He did say it could be a chemical reaction which is causing the loss of pigmentation, only problem is im pretty sure i havent been exposed to anything. I did have blood tests recently which i am waiting for results so hopefully they will include an allergy test. I did look up your suggestion and it seems to be medication that actually might work but the possible side effects are holding me back. I have not really looked into it but its not been approved by the medical board for use in the UK, so again another obstacle as to where i would get hold of it from. Have you tried xeljanz yourself and do the pros outweigh the cons?,
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Fitstly i really appreciate your response, thankyou, iv been doing a lot of reading on celiac disease and gluten allergy. I do have other symptons of gluten allergy such as fatigue and a bloated stomach at times. Its been hard to deal with everything seemingly going wrong together but i cant do anything about it so im trying not to worry but i damn well do miss my hair. Im waiting for a blood test which my dermatologist requested, lets see what comes back. Iv not heard of the paleo diet and have u tried this yourself or know anybody on it and has it helped?
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Hi return_life, thanks for your response and i appreciate the concern. I think the only thing left for me to try is diet change gluten and dairy free. I cant believe id say this but my alopecia is the least of my worries at the moment and id say dealing with vitiligo is far worse. Thanks for your advice and encouragement. I dont know if everyone is the same but i feel terrible and low some days then try and not get myself down and be happy for a few then back to feeling terrible again.
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I'm so sorry you're going through all of this. I have AA/AU and vitiligo and it is very difficult. These two autoimmune conditions are related. I have seen countless doctors over the years and spent thousands of dollars on alternative therapies. All I can tell you that has worked for me is focusing on healing my digestive system, getting lots of nutrients from food, LDN, and tons of self care. All these things have slowed down the attack against my body, but not stopped it. If I'm really stressed and start worrying or if I let myself get run down - things flair up almost immediately. I wish you all the best with what you are going through and I hope you find comfort that you are not alone in this.
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Hi cheyenne. I really appreciate your response, i totally understand what your going through, dealing with AT/AU was hard enough but the vitiligo is making my life miserable, i would really like to know which you developed first, where the vitiligo started on your body and time frame of spreading. Flair ups, does this mean your hair comes back and the pigmentation on your hands then goes again during flare ups. A friend seriously suggested that i could have celiac disease which prevents your body absorbing nutrients and has something to do with gluten but im not sure, did you have allergy test done, sorry for all the questions but im extremely worried that my immune system is not working and am afraid this could lead to worse problems such as melenoma. I know it sounds drastic but all these sudden changes are telling me something is seriously wrong. I have developed eczma which i never had before. Every day i wake i watch my body being eaten away, thats the only way i can describe it! :(
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Hi,
No worries, you can ask me anything you like. I developed vitiligo at eighteen (I'm 35). I had small white patches on both my feet and a small spot on my hands. Like you, I tried creams and ultraviolet light treatment - but it continued to spread, very quickly at first. I have never had any re-pigmentation, but I can go years without losing anymore pigment and then if I get run down or go through something stressful - I notice new spots. I think I have lost 70-75% of my skin pigment. I wear UV clothes to protect myself from the sun. I don't eat gluten, but I can't say if that helps or not. But, I think your friend is on to something. All my vitamin and mineral levels are always low, but I eat so well and take supplements. I can't imagine how low they would be if I didn't. I worried and worried and searched for answers for years, decades even and I'm not sure if it did me any good. The only thing it did was keep me busy and focused on something - which I guess is a good thing. I have had re-growth of my hair and eyebrows, just white fuzz. It grows for a bit and I lose it again. Sometimes I just shave it off to save myself the pain of watching it fall out again. I saw a immunologist recently who is sure all of this is genetic and soon with gene testing we will know for sure. I'm not sure of anything anymore. I just (try) to focus on living the best life with what I have. I have good days and days when I feel ugly and sick and sorry for myself. I totally get what your saying about your body being eaten away, just try not to let your mind do the same.
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Hi amr 1,I have been AU for 35yrs and have suffered same symptoms as you at some time or other apart from milky spots.All of these symptoms appear to be immune related.Take a look at the Ldn thread started by pterese which is very informative.I myself started this treatment around 2 months ago and feel so much better for it although still no hair as yet lol.
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Hi kev, thanks for your reply, i will check out the thread you mentioned, any information will be helpful to try and figure out whats going wrong with me, thanks
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I had vitiligo for several years before my alopecia became serious. With hypothyroidism, vitiligo, and alopecia, I certainly wish there was some way to address general autoimmune issues. On the other hand, I consider myself lucky because, so far, none of my autoimmune conditions are debilitating.
I remember having a small white spot on the back of one hand and knowing it wasn't right. I tried some lotions but didn't see any improvement, and I wasn't interested in pursuing further treatments that probably wouldn't work and came with risks. I see occasional spots of re-pigmentation, often in the summer but as the years go by more and more of my body is affected. I know I get off easy because I am fair skinned, so if I stay out of the sun there isn't much contrast between pigmented and unpigmented areas. To me the vitiligo is kind of a non-issue at least compared to the extensive alopecia.
A couple of years ago I went to a rheumatologist to try to get some answers about my immune system. I was tested for celiac disease and general inflammation, and the lab numbers showed I was perfectly healthy. Hah. Still, better to be mostly healthy without pigment or hair than have my body totally imploding.
I'm reading an interesting book, The Epidemic of Absence, that puts immune system function in an evolutionary context, suggesting that the very tendencies that predispose some of us to autoimmune disease were advantageous under certain past conditions. As well as our guts having evolved along with lots of helpful bacteria that have impacts on our immune regulation, the typical human used to have chronic parasitic infections. Remove those parasites, and while we may be healthier in some ways, we become susceptible to autoimmune conditions. Worms anyone?
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