WHY AM I LOSING MY HAIR

I REALLY DON'T UNDERSTAND WHY I'M LOSING MY HAIR IT'S DRIVING ME CRAZY AND MY FAMILY FEELS WHY AM I MAKING A BIG DEAL ABOUT THIS. DOES ANYONE FEEL THE SAME WAY ?

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Hi,

Yes, I understand completely! I started losing my hair July of 2009. By November 2009 I had no hair. At first my doctor said he thought it was from the four weeks I took 30mg a day of steroids. Didn't matter that I took that two or three years before that for six weeks and my hair didn't fall out or that I had stopped taking the steroids he was talking about in may of 2009. He said it takes a few months for a shock to the body to make your hair fall out. I have not been on steroids since may of 2009 and it was such a low dose, I have never and will never believe that is the reason. To this day I still have to wear wigs. My hair has grown in very thin and stopped at my neck. You can see my scalp through it and the hair is brittle and falls out every time i brush it or put a hat on or do anything. Some of the hair that grew in is gray or completely white which is strange being I am only 38 and no one in my family had gray hair until they were almost in their late sixties. Now he says he doesn't know but he doesn't seem to care either. My sarc doctor is the same. I asked if sarc could be responsible and he tells me no and that everything is not to be blamed on sarcoidosis. But then he's not concerned about the test that showed mild thinning of my valve or chamber of my heart (my memory sucks and he only told me on the phone vaugly and said we'd discuss it at out appt at the end of oct. this was in august) so my faith in him in not very high. I'm not sure why or if it's sarc thats the cause but I do know it's devestating. My thoughts and prayers are with you and I hope your hair comes back thick and full.

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My hair has thinned out so much. It comes out in handfuls. I had such thick beautiful hair when I was younger, everytime I would go in for a haircut they would thin it out. Not anymore.
My sister told me about some powder that Joan Rivers' sells on QVC. You choose a color that blends with your hair and brush it on your scalp. It help the thinning areas to not stand out as much, I think I am going to try it.
Good luck, and may we all have thick beautiful hair again!
Megee

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A lot of my hair fell out a few years ago, it definately thinned since then and has never been the same. At the time, I thought it was the Imuran I was taking, but I've since read that hair loss can be a symptom of sarc.

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I feel terrible about how thin my hair has gotten, it's horrible and I get so embarassed. It's awful for women, so much emphasis is placed on hair in our society and I always had nice hair. It's naturally curly and I wear it short. It makes me want to cry when I go to get it cut, I hate looking in the mirror when they're done cutting it because I see how thin it is on the crown. My best friend says it's not that noticeable and I know I'm too critical, but Rosie06, I understand how upset you are. All we can do is tell ourselves we're beautiful no matter what, because we're survivors and we're fighting everyday against sarcoidosis. You're beautiful Rosie, I hope knowing you're not alone will help. C.J. aka CoCobread

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Mine is starting to come out in handfuls... everytime I shower I cry. It is very hard to "let parts of yourself go" and look in the mirror only to see someone else looking back.. how are we supposed to have self esteem and willpower to get ourselves through this?... it is very hard on the mind... don't listen to your family tell you those things... we need to find a way to handle this, because when people talk, they have no idea what they are really saying..... (they have thier hair) :) It's easy for others to judge you... Is it so much to ask to be able to fight this disease WITH our hair? with our dignity? with our sanity? I am sorry, I am emotional today... :) This disease, the pills to treat and all side effects and symptoms are unbearable sometimes. I am praying for all of our hair back!

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My hair started thinning, and I started putting small amounts of coconut oil in my morning coffee. If you do it, you need to start small, because it (Coconut oil)can make your heart flutter, or give you dihreaha (sp). I also started drinking lots of water with organic apple cider (with the mother). My hair started to thicken. It still falls out, but it no longer has a thinning spot at the crown. My grandson, and daughter both remarked at how my hair looked much thicker. Remember if you do it, start with a small amount with both CO and ACV.

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Rosie, you don't say whether or not you're on prednisone. If you are, then that is a cause. And you can do something about it.

My hair was falling out in chunks. Very depressing. At the same time, my daughter was diagnosed with a hair disease--LAS, Loose Anagen Syndrome. Meaning that her hair follicles were not strong enough to hold the hair shaft in place. Turns out she didn't have it, (one quack derm), but I did a lot of research on it in between derm diagnosis'.

There is a hair care product, Nioxin, that you can get. It's a 3 part system. Shampoo, Conditioner, and scalp treatment. The last one is heavy in niacin which temporarily burns, but clears up in a few minutes. It works, but it is $50 for the set.

Also, I went to a health food store and asked for liquid biotin. They didn't have it, but when I told him why I was looking for it, and mentioned that I needed some myself for prednisone hair loss, he brought out a box of vitamins that they kept behind the counter for their cancer patients. He said they were so good that they had to keep them back there or they'd walk off.

It's called Purvana. It's a white box with green on it. They're HIGH in biotin. But they contain other vitamins and herbs, too. My hair is not falling out now, and it's thickened up a bit, too. They are a miracle! $22 a box, approximately, for 30 gelcaps (horse-sized! lol).

Try these. If you still have problems, see a dermatologist.

Loran : )

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Yeah, I have lost about 30 percent of my thickness. Handfulls every time I brush it or run my fingers thru it but thankfully no patches so far very well spread out. Told my rheumatologist and he didn't seem overly concerned, of course, it isn't his!

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I lost my hair on the back of my head(about the size of an orange) I had no idea until I was at the hair salon and the usual lady who cuts my hair found it. I went to a dermatologist and was diagonosed with alopicia areata. He gave me a few shots in the back of the head and a script for Triamcinolone Acetonide Ointment . After a few visits believe it are not 6 months later and my hair grew back---it might just be a little thinner but, you can't tell that I had no hair there. The doc said that this happens to quite a few people with autoimmune diseases. Definitely get a referral to see a dermatologist because that's their speciality of expertice.

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I lost huge amounts of my hair while not on prednisone. My pcp sent me to a dermatologist who prescribed spironolactone for my hair loss. It has really helped tremendously. Good luck to you

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I've just started with the hair loss. I've been on MTX for ayear with no problem. I have been taking Diamox to keep my eye pressure down. Doc does not think that is the problem. I hope it is and I hope I can stop taking Diamox next week. I've been on it since June 22nd. That's the only new hing that's been added to my regime.
Sister
But as others have said, beauty is from within. I have to wear a hat with a shade brim for my light sensitive eyes so I guess my problem is sorta solved.

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i've been trying to convince myself for a few months that my hair is not falling out because i have always been known for my hair. my neice who is my hairdresser also loves to do my hair because i have always had so much of it, it does just about anything she wants it to. but it is so much less, i have to keep dyeing it black because as soon as the grey comes back i look like i'm bald. my husband even commented that i look bald. it's horrible. i take pred occassionaly, every so many months i have a two week course. cher

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I lost probably 1/2 of my hair too. My doctor told me it was the prednisone. After I stopped taking it my hair began growing back. I was very upset when this happened. I can't believe how much hair I lost. Thank God my hair was very thick to begin with. If you are on prednisone it is probably from that.

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Sorry you are having this problem and you have received some good advice.
I, too, have had some hair loss, the Dr said he didn't know what was causing the problem....imagine that!!
I think it is the prednesone that I have been on for 2 yrs. I use to have thick, lustrous hair and now I just keep it short and occasionally wear a wig. Paula Young has great wigs reasonably priced. They are on the internet.
Good luck and God bless!

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Cher

Try Blackmore's Nails, Hair & Skin tablets. They have a therapeutic (mega-high, clinically trialled) dose of biotin and are fantastic for hair and nails.

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I've used the Joan River's powder multiple times and it does help to cover the scalp. You can also get it at www.SoftSurroundings.com. It comes in a container like blush and that's what it looks like except its your hair color that you choose.
My hair has thinned out again for about the umpteenth time and I am so angry about it! The only thing I can correlate with it is the vitamin d at 50,000 units and then at 1000 units every day on top of taking other vitamins that are 450% of the DV. I am taking the Hair Revival vitamins and they worked before, but I think they haven't been working now due to the vit D. That vitamin is so controversial with sarc, but I"m calling the only known sarc specialist around tomorrow and see what she or her nurses can tell me. She's 300 miles away, but at Vanderbilt, is the widely respected specialist. Good luck to all of us!

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I've also been prescribed spironolactone at 50mg twice per day. It worked at the beginning too, but now after a year, maybe it needs to be increased? My endocrinologist prescribed it. My Hair Revive vitamins have a lot of biotin(2000%) along with other vitamin Bs and things like hair growth complex, hormone balancing complex, and Chinese herbal hair complex. I just hope something will start to work because it does effect my mood when I feel like I'm going bald. My thinning is in one patch toward the front now and its hard to comb over. I think I resemble Donald Trump:)!

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I had thick long hair down the middle of my back before I went on high doses of steroids..... Is it the steroids that make your hair fall out or is it the stress the steroids puts on your body? Either way I did go see my dr. He did labs that all came back normal. He advised to take over the counter Biotin. It really has helped quite a bit. I did have to cut my hair shorter, but within a few weeks it quit falling out. Hope this helps.........

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Thanks Tawney, I will do. Much appreciated, Cher

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i want to thank everyone who has replied.thankyou thankyou when i read some of this replies i just cryed i thought i was the only one out there like this.yes i been on the prednisone for sometime and yeah when my hair falls out it is in gobbs that i think "why me". but i do think things are going to be better:) an for everyone else my best wishes:)

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