Hair loss: I am wondering if anyone has... - The Australian Sj...

The Australian Sjögren's Syndrome Association

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Hair loss

Nousernames profile image
6 Replies

I am wondering if anyone has experienced hair loss? I used to be recognized by my thick hair. ( I guess that's the only reason I still have some).

I've take biotin, I use rogaine. I don't wash it as often.

I have to vacuum daily. I just walk across the room and hair is falling out. When I get up from the couch or car, I have to pick the hair.

It's bad enough to be sick everyday, but bald too?

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Nousernames
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6 Replies

Sorry to read ofyour hair loss. I’m sure you will have thought of this already but just in case not I thought I’d ask - has your thyroid been tested lately or, if you are Hypothyroid, has your dosage of thyroxine been checked recently?

My hair fell out from alopecia aerate when I was a kid again, post gestationally about a year after my 3rd son was born. Fifteen years or more ago I was discovered to be Hypothyroid - then more recently - found to have Sjögren’s. It’s never fallen out since the former was treated, even when I took Methotrexate.

Hi NUNames - I have had SS since about 1992 or so, and my hair thinned at the time. I believe it was due to a hypothyroid issue that showed up and the same time. My hair is still relatively thin compared to what it used to be but it is much better than it was. I take folic acid every day and that has made a huge difference... Best luck in figuring it out!

kiphlthy profile image
kiphlthy

Hi,

I used to have really bad problem with hair fall. I was losing a considerable amount of hair. First i would strongly recommend you to see a dermatologist.

After a lot of research and recommendations, I got to know Biotin helps to improve hair strength and stop hair loss. Bananas, eggs and milk are great sources of Biotin. I started eating a lot of these and after seeing changes. I also started taking vitamin supplements.

I can personally attest that this helped me a lot and am all good now. no more hair loss. let me know if you need more info

snowlee profile image
snowlee

Yes, and if you take Plaquenil it can make it worse. Most of my hair loss occurs at the temples, right and left.

Nousernames profile image
Nousernames in reply tosnowlee

Hi, thank you for your experience.

I've been on plaquenil for at least 9 years.

I quit taking it for about a year, but realized that it was helping my joint pain.

My hair has been falling out in handfuls for the past 3 years and also much worse at my temples.

I am so afraid if I don't find a resolution I will end up with no hair at all.

I saw a dermatologist and have used Rogaine, take biotin vitamins, but they didn't help me.

Someone else suggested I have a thyroid test. I will definitely be having that checked.

I hope this doesn't sound ridiculous worrying about my hair, but on the rare occasion I do leave my house, I don't feel like myself. I purchased a few hat's, but I look ridiculous and uncomfortable.

I have had this disease for so long and have almost every part of my body affected.

Now I am going bald and losing my teeth.

No one understands but other people like you who suffer with the disease.

I will let you know if I can find something that helps.

For now, I'm looking at hair pieces, but they are really expensive like all of the dental procedures.

I appreciate having a place to ask others how they deal with it and knowing I'm not alone.

Sometimes it feels that way.

snowlee profile image
snowlee in reply toNousernames

I use a product now called Toppik. It is a keratin spray that comes in about 6 or 7 different hair colors. My hair is light brown so I use that color. Before I go out, I spray it on the temples. It fills in the area pretty well. Looks natural. Have also been thinking about a wig and/or a hair piece. I just hate wearing things on my head. I think it would be hot in the summer.

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