Newbie 17 years old with lupus my hair is falling out drastically

New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/17/2012 9:44 AM (GMT -6)   
I was diagnosed in june 2012 so am just starting to get to grips with this diease and all its consequences in the past 3 months iv had blood clot round my lung and protein leaking from my kidneys (all now under control) and extruciating pain i started of with the lovely butterfly rash (it aint pretty so why call it butterfly is beyond me) then pain that was like a bus running over my entire body all the time shoulders, knees, wrists, fingers, toes, ankles, chest and back all was affected then i started being sick and couldnt keep any food or drink down not even water in less than a month i had lost 2 stone and my doctor was taking forever to get a diagnosis i was forever collapsing and my mum dialling 999 before i went to a specialist lupus clinic who give me this diagnosis based on positive ana, dna, antiphosphoild syndrome and rhuematoid factor not to mention im aneamic, have sticky blood and low in vitamin D not to mention tachicardic all the time at resting stage i check regularly my own bloodpressure and pulse with regular urine testing myself for any protein leakage. This is so exhausting and its only been 4 months im just consuming that this stupid diease has no cure. But my problem now is hair loss i have long hair down to my back it was medium not thick but not thin now i look like the end bit of a broomstick its full on top almost but the bottom is like all ropey and tangled all the time my fiance is very supportive but i feel so ugly like this i wear scarf on my head i used to love doing my hair now i cant touch it or leave it down is there  any hope at all of it growing back to how it was and how long does it take to grow please i just want to know because my doctor tells me nothing.
 
Thank you very much any other info would be nice just a general friend with lupus to talk is appreciated (WOMEN ONLY PLEASE) 
 
Danielle Steele

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 10/17/2012 10:57 AM (GMT -6)   
Welcome to our forum Miss Lupus. I'm so sorry you're going thru such a rough time, especially at such a young age. Believe me when I say that it will get better. You will (or should) be working with your rheumatologist trying different medications until you find what works for you. Don't be surprised when you peridodically must change to new drugs.
 
I recently asked my rheumy to take me off Cellcept (generic mycophenolate) because it's such a strong med. It didn't take long for me to get a terrible lupus flare. One thing that really bothered me was hair all over my bathroom floor and handfuls in my bathtub drain. My thick hair became thin and after 6 months I asked to go back on Cellcept, along with my prednisone and plaquenil. My hair is growing back now. I don't know what combination of drugs will work for you, but you're bound to find something eventually. If you don't like your rheumatologist and can change, you might consider it if he's not willing to try different meds.
 
In the mean time, use a hydrating shampoo and conditioner. I use the Clairol brand. I also occasionally use a hot leave in conditioner and even hot oil treatments. Anything to make a comb run smoothly thru my hair & keep it from falling out. I hope we hear more from you Miss Lupus. I love your writing Sweety- you're very expressive! I'm sending you lots of hugs and positive energy. Love, Butterflake

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/17/2012 2:28 PM (GMT -6)   
Once you get your medicines balanced and your flares under control your hair will begin to grow back. I used to have a headful of hair and now it has thinned some and started curling. :)
I found by cutting my long hair shorter it's not as heavy and doesn't break off so easy from the pulling of it's weight.

You can find some beautiful sun hats online to buy. I don't go anywhere without my hat.
Make sure to avoid UV rays. The sun, fluorescent lighting and halogen lights all emitt UV rays. They can cause your rash to worsen and make you feel worse. If you have to be exposed to it use sunscreen and sun protective clothing. Try to limit your time with it even protected.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/17/2012 2:33 PM (GMT -6)   
I havent cut my hair short since i was little thats a different experience for me as for hats i like to wear scarfs on my head its ok and i wear different designs but i used to love my hair and with girls my age they love to do there hair but it should grow back eventually shouldnt it

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/17/2012 7:53 PM (GMT -6)   
Everyone's different with their hair. I know mine grew back but not as thick.
Is your hair thin all over or thin in spots?

Thin all over- it should come back mostly

Thin in spots- maybe it depends on if it's from sores or not.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 10/17/2012 8:49 PM (GMT -6)   
I had my hair thin to about 1/2 normal -- but once things got under control it's all come back -- maybe even thicker than before.

I can't make suggestions about long hair care while this is happening, thou...I've had short hair for many years, and can't live with it too long! (But do insist on my ears being covered at all times.)
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/18/2012 4:31 AM (GMT -6)   
My hair is actually still thick on top i can do a beehive but as it gets to the bottom it goes like a rope and gets tangled together when i take my hair down, it bunches into about 4 big tangles making it look like 4 long black ropes its not nice i used to have a few thin spots where you can see my scalp at the sides but the bottom bit bothers me the most everytime i brush them they get tangled again i ask my fiance to help if he can untangle them and yet they still bunch up again my hair never used to be major thick but it wasnt badly thin either

CAN I ASK HOW LONG IT TOOK FOR ANYONES HAIR TO ACTUALLY GROW BACK i would like to know from anyone whos hair has grown back iv only been suffering 4 months i miss my hair i cant even look in the mirror

Thanks everyone

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/18/2012 4:38 AM (GMT -6)   
I havent had any flares since i got on my tablets in june apart from abit of pain in my knees everything is fine i dont even have any rashes for a little while its hardly like i have lupus altoghether my hair has been falling since end of july i wish it would stop by now.

I take ADCAL D3 = For vitamin D Deficency
Prednisolone
Plaquenil
Asprin = To thin the blood
Omeprazole
Ferrous sulphate = Anaemia

Can any of these tablets affect the process of hair growth or make it fall out even

Another thing my hair fell out as soon as i started to take these tablets not before or during the time i was diagnosed which made me just think it was my tablets but i dont no

Any info appreciated.........

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 10/18/2012 8:07 AM (GMT -6)   
Check the side effects of your meds at /www.walgreens.com/pharmacy/library/checkdrug/selectfirstdrug.jsp. Maybe one of them is doing it, but more likely it's your lupus itself. (None of those meds affected my hair, but everyone responds differently.)

There is a vitamin supplement that helps grow hair but I can't think of what it is just now.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/18/2012 12:32 PM (GMT -6)   
It's bioten that helps the hair grow.
Do you feel any new growth on your scalp? I can rub my fingers on my scalp and feel the stubble as it grows back.
Hair grows at the rate of 1/2 inch a month. It can take up to 4 years for a hair to reach it's full length before falling out from old age.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/18/2012 12:57 PM (GMT -6)   
I remember when i did cut my hair about half the length from my back so it reached just past my shoulder it took a year to grow to the original length it was before i cut it il say my hair grows quite fast so maybe its less than 4 years it wouldnt fall out from old age im only 18 so i hope not hahaha this is just lupus related .......

Cindy K
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 10/18/2012 1:10 PM (GMT -6)   
I have had discoid lupus for 15 years... Remission for 10 (thank you, God). It came back with a bloodlust 3 years ago. I wear sunscreen, big stupid hats, and long pants/sleeves and gloves any time I go outside. With 400 mg Planquenil, it is finally under control (for this week). I have lost half my hair and it is brutal, in terms of my self esteem and feeling of worth as a 55 year old woman. I keep telling myself that the alternatives (such as cancer or SLE) are worse and I am blessed to have DLE. But, I am tired of painful red spots all over my face and scalp and the hair loss. I cut my hair short which gave my husband pause... Just trying to get through and maintain who I am (I am a child of God, with or without hair!). Blessings to those who suffer and I wish I had some answers...

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 10/18/2012 1:24 PM (GMT -6)   
Actually, it's Vitamin B-12 that I was thinking of. Add little Vitamin C and avoiding stress....that's one way to support your hair. Also try to get enough clean protein everyday.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/18/2012 2:40 PM (GMT -6)   
I ment that the life span of the average hair is 4 years. Not your lifespan. LOL!
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/18/2012 2:55 PM (GMT -6)   
Hello Cindy K

Wow discoid lupus is so bad to i know it affects your scalp and skin do you get joint pains at all? I have SLE sometimes i feel im grateful to have that instead of discoid lupus that must be really tough to have i love my hair and my skin SLE can be bad but i feel like idont have it at all sometimes but then i have only been dignosed 4 months ago

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/20/2012 4:38 AM (GMT -6)   
Does anyone experience alot of back pains, headaches and Nausea im still on my tablets so i dont no why i get this does anyone else experience this?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 10/20/2012 10:13 AM (GMT -6)   
When is your next rheumy appointment? It seems that perhaps your current medications are not sufficient since you are still experiencing these symptoms, and s/he needs to re-evaluate how best to help you.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/20/2012 12:00 PM (GMT -6)   
Today has been a worst day it was time to wash my hair and since i wear scarf i removed the scarf and a few clips and looked at my hair all tangled matted and SHORT yes short it seems to be breaking of

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/20/2012 12:10 PM (GMT -6)   
at the ends i stareted to cry so badly i was sick i cryed for my mum then my mum cryed she didnt no want to do i cant forget i have this illness something is there to remind me my hair just feels like the worst part the way it looks its ok if its just abit thin but me its terrible and i really dont want to cut it do you think my rheumy can do anything about this? Im currently using nioxin to wash it iv only used it twice dont no if it works my normal gp once said nothing will work your hair will grow when but do you think my rheumy will be able to help last time he said nothing but its worse

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 10/20/2012 2:23 PM (GMT -6)   
Miss Lupus,

I was diagnosed because of the hair loss. It was the only thing the doctors could "see" was a problem. Then they did blood work and all the rest of the weird things made sense. My hair loss was extreme, not much there at all, and I was getting married in 6 months. I was put on Plaquenil and Prednisone. With in two months my hair started to grow back. It was back to "normal" within 8 months or so.

It fell out again so I tired Nioxin. I almost went completely bald. The nioxin did not work for me. I was very sensitive to it and caused my lupus to start up again. After that, my hair started to grow again and has been good for many years, until about 10 months ago. It started to come out by the handfuls and is very thin again.

It is hard to see your hair fall out but if the lupus is not hurting organs it is not that bad. I know that it is easier said than done but it should get better.

Best of luck!

LupusMomma
"When in doubt, smile."

Fibromyalgia, SLE, Dysautonomia

Savella, Tramadol, Plaquenil, Tizanidine, Flonase

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/20/2012 3:16 PM (GMT -6)   
I hope the nioxin doesnt make me go bald my fiance is brushing my knots as i write he helps so if it falls out he hides it from me which alot better i seem to have so many dead hair that, when you brush it, it move to the bottom and then falls out have you eperience something like this. Its really hard when i lose my hair im only 18 and im scared i look so ugly and my fiance would leave me, although he always says he loves me and he wont ever leave me i dont accept it.

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 10/20/2012 10:02 PM (GMT -6)   
Well, I can't speak for your fiancé, but I was loosing my hair while dating my husband and diagnosed 3 days after he proposed. I was scared that he would regret being with me, since I was sick and going bald. I even offered him an out if he did not want to take on a sick wife. He assured me that he would not care if I had no hair, and he still looks at me like he did when we first started dating...we have been married 9.5 years.

Anyone who truly loves you will not care what you look like. They care that you are there (alive and as healthy as you can be). Just love him back and know that life will be difficult, but there is nothing you can't get through together.

This sounds sappy but rings true for me. Best of luck. By the way, I am much worse off now, then I was when we got married. He still loves me and I could not ask for more.

LupusMomma

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/21/2012 12:19 PM (GMT -6)   
The things what your husband says is the same for me i remember when i was in hospital and he worked from 7 in the morning to 7 at night he used to come straight from work upto the hospital didnt even eat (he was too worried) and stayed until the nurses said he should go he hated going home to the empty house. I can tell that the things he does and by the person he is he truly cares and loves me but of course when your appearance changes different to how we first met you look different and feel he wont love how i look now but i no im wrong when im down i turn to him and without him i know theres no point in fighting this diease but with him i feel i have something to live for this diease almost killed me (as i was diagnosed really late and it was beginning to affect the kidneys) one day he was stroking my head and singing slowly (hahaha) the next my eyes rolled back into my head and thats all i remember. He said id gone limp and quite cold to touch id suffered a cardiac arrest and the nurses didnt no if i was going to pull through they told my family to say there goodbyes...... But i wasnt leaving earth just yet...Lol i pulled through and thats what scared him the most knowing that i nearly wasnt here anymore i just need to shut my mouth and understand this illness is so tough but with him i pull through each day like i hav'nt got lupus. Also its so nice to have extra support from people on her with lupus its nice..

Danielle

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/21/2012 5:39 PM (GMT -6)   
Sounds like you've got one of the good ones, Danielle. I hope you too have many happy years together.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Cate55
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 10/22/2012 7:13 AM (GMT -6)   
My hair started falling out about 15 months ago.  I was noticing a bunch of hair on the bathroom floor, in the shower drain and in my brush.  My regular doctor sent me to a dermatologist.  She did a scalp biopsy which confirmed SLE.  She put me on a topical solution, Clobetasol.  At the same time I had a Positive ANA test and was referred to a Reumy.  I eventually lost all of my hair within a few months.  I purchased a very nice wig (very natural looking).  I also started taking Plaquinil.  Earlier this year the hair started growing back so I was hopeful the hair loss was over.  By late June I stopped wearing the wig as I now had short and curly hair (never had curly hair before).  I was not aware how much the sun exposure affected this and sure enough by the end of the summer it started falling out again.  I used sunblock and wore sunhats but I guess I was in the sun more than I should have been.  Now I know better.  The wig went back on in September and although some of the hair is still falling out I do see some regrowth in some areas.  I will take more precautions to keep out of the sun ( I was a sun/beach/boat lover).  I think once you get a handle on this your hair will grow back.  Good luck.
New Topic Post Reply Printable Version
37 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, July 19, 2018 4:30 PM (GMT -6)
There are a total of 2,983,302 posts in 327,103 threads.
View Active Threads


Who's Online
This forum has 161906 registered members. Please welcome our newest member, Baginapples.
456 Guest(s), 13 Registered Member(s) are currently online.  Details
George_, mysweetpanda, therearemiracles, Michael_T, browntrout, Daa111, Libertee, fawad malik, Tudpock18, Noah2112, FLBeachgal, straydog, suchatravesty