Hair loss with lupus: I know that hair loss is a... - LUPUS UK

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Hair loss with lupus

shareasmile profile image
23 Replies

I know that hair loss is a symptom of lupus. Has anyone here with a lupus diagnosis experienced hair loss on legs only, but still full hair on the head?

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shareasmile profile image
shareasmile
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23 Replies
asma1364 profile image
asma1364

hi

I have SLE for 13 years before i took lupus i had amazing hair. my hair was thick but after that i lost my beautiful hair the Gp had prescripted some supplement but they hadn't effected. some times I put minoxidil in my scalp first it doesn't bad but when I put Rogain on my scalp all I lost all my hair....know spaces where I put the Regain was empty.i give up use Minixidill but I take Alupesia and I really depressed.but surprisingly in all this years grow some baby hair but the felt and my scalp didn't full of hair. in fact my lupus had controlled in this last 10 years but doesn't effect. on the other hand i start Azaytropin last year but know the Gp chenged it to Cellcept and I don't know if this drug cous my Allupecia know?i☹

shareasmile profile image
shareasmile in reply toasma1364

I lost a lot of head and facial hair with methotrexate, but since changing meds, my head hair has filled in nicely again. My legs are nearly bare.

JOWE profile image
JOWE

Legs, body and head. Mind you these are probably the least worrying of my symptoms. Good luck to all out there. Some one recommended a daily dose of apple cider vinegar. 1/10 th of a glass . ANYONE ELSE HEARD THIS?

Poshcards profile image
Poshcards

No but that would be good! X

LupieMani profile image
LupieMani in reply toPoshcards

Made me chuckle :)

Cyclegirl profile image
Cyclegirl

How old are you? I am 56 and my hair has pretty much stopped growing on my legs but I have a full head of hair.

shareasmile profile image
shareasmile in reply toCyclegirl

I am 53 and have had a lack of significant hair on my legs for several years. I lost a lot of head hair with methotrexate, but it has grown back since stopping that med and I think it is even thicker now. I have not been diagnosed with lupus yet, but symptoms and ANA of 1:640 seem to point towards it more than the seronegative RD that I currently have as my diagnosis. I am still trying to get to the bottom of this autoimmune mystery.

Elle-26 profile image
Elle-26

Hi Shaeasmile :) I lost all my hair on my head,eyebrows,eyelashes and also patches on my legs and elsewhere ... I noticed that I lost alot of hair where my muscles are on my legs, Ive no hair on the tops of my legs ... Seems weird but thing about it is thats where the inflammation starts on the muscley parts ... Sorry I cant help ... XxXx

shareasmile profile image
shareasmile in reply toElle-26

Thanks for sharing your experiences, Elle. XxXx!

Tiras profile image
Tiras

👣👣👣👣👣👣👣👣👣👣👣👣👣Hi;

I am a 56 year old guy from the southeastern part of the U.S. in the state of Alabama. I have SLE and I have lost all of my body hair from the neck down, no under arm hair, no chest hair, no leg hair, and no hair in private places. The hair in my head has not been effected. I can't explain it other than that's just the way lupus does.

Because of Lupus I have had to go barefoot for the last 2 years!

👣Lupus effects us all in different ways, but, yet it effects us all in the same way. It doesn't make sense but, then neither does Lupus👣

I hope you have had a GREAT WEEKEND!

👣👣👣👣👣👣👣👣👣👣👣👣👣👣👣👣👣👣Tiras👣👣👣👣👣👣

jacrjacr profile image
jacrjacr in reply toTiras

why do you go bare foot

Tiras profile image
Tiras in reply tojacrjacr

👣👣👣👣👣👣👣👣👣

Hi Jacrjacr;

I have had lupus rash/blister on my right foot for 2 years. The skin on top of my foot will be rubbed raw by shoes in just a few minutes and start bleeding. You can go to my profile page and see photos.

Hope you have a good weekend!

👣👣👣👣👣👣👣👣👣👣👣👣Tiras👣👣👣👣

shareasmile profile image
shareasmile in reply toTiras

So strange that you still have all of the hair on your head but nowhere else! I hope your feet improve, but at least you are in a warmer climate!

Tiras profile image
Tiras in reply toshareasmile

👣👣👣👣👣👣👣👣👣

Share;

Unfortunately the doctors have told me my foot will probably never get any better. After 2 years of going barefoot, I have adapted. Now going barefoot just seems natural. The bottom of my feet are so tough I can walk anywhere on anything and I think nothing of it. Actually now I don't think I would wear shoes even if I could. I have a letter from my doctor that states I am not to wear shoes.

There have even been some places where we shop that has changed their policy for my. They no longer have the shoes required signs posted. Believe it or not, I have only been questioned by a store 1 time. Once they saw my foot there was no issue but, that is why the doctor gave me the letter just in case I ever needed it.

I hope you have a good week!

👣👣👣👣👣👣👣👣👣👣👣👣Tiras👣👣👣👣

Ginatay4t profile image
Ginatay4t

Yes sometimes i wonder if its the medications that causes the hair lost all my hair is gone. Is it any treatments to get your hair growing again. So thats the question why does your go with Lupus.

jacrjacr profile image
jacrjacr

a dr i just went to said test your cortisol bec if it is high it can cause hair loss and guess what causes it...high stress

she also said that zinc, iodine, and free t3 levels need to be checked , ferritin iron, and braggs apple cidar vinegar works to help with circulation and digestion bec as you age or body deteriates or high inflammation...digestion can be bad and limit your nutrient absorption.....she couldnt believe other drs had not addressed any of these causes....

Nickymck profile image
Nickymck

Hi Shareasmile. I have had diagnosed lupus for 11 years. In that time my hair at the front has thinned,everywhere else on my head as thick as ever. Underarms, legs etc very much reduced growth. Hardly ever have to shave, one benefit I guess. Every symptom of lupus us so person specific there are hardly 2 answers the same. Take care.

shareasmile profile image
shareasmile in reply toNickymck

Thank you Nicky. I don't have a lupus diagnosis yet, but am trying to make sense out of all of my symptoms and have been curious about the lack of leg (and toe) hair. Part or all of the hair loss might be due to my raynaud's and bad circulation. As of now, I am diagnosed with seronegative RD, but have never thought that was quite right. Fortunately for me, Enbrel has helped me feel quite a bit better. But I am still on a seemingly endless journey for answers!

Nickymck profile image
Nickymck in reply toshareasmile

Hi, if something is working I font question it too much I am.just grateful. Good luck on your journey.

Cal66 profile image
Cal66

I have not needed to shave my legs much since going through the menopause when I was 44, but other than that no. I don't know how old you, but you could be going through an early menopause, especially if your not loosing hair from anywhere else. Sorry I'm not much help.

shareasmile profile image
shareasmile in reply toCal66

That information actually does help because I am 53 and have had a hysterectomy. So maybe that explains it. It's funny that perfectly natural life changes can be suspicious "symptoms".

diane1428 profile image
diane1428

It's a difficult one. I do lose hair on my head but have hardly grown leg hair for the last two years. Regards Diane

Whenever I would have a flare up because I'm blondish all the blonde hairs on my arms would just offer and I noticed my hair and my head feels a little bit but not enough for anyone else to notice I just noticed it as I put my hair up in a ponytail so I noticed that I didn't need to wrap the band around as many times but it wasn't noticeable to anyone else but I lost all the peach fuzz on my body it was weird

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