18 and I think I have lupus

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lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 5:22 AM (GMT -6)   
Okay, so I have been experencing extreme diffuse hair loss all over my scalp for about a month and a half, ive lost about 1/2-3/4 of my hair - the remaining hair is SO DRY AND BRITTLE, it is falling out without me even touching it, just dropping out of my head.

i went to the doctor, who got me some blood work, put me on nizoral and betamethosone.

nizoral and the other stuff isnt doing a thing - anyways, blood work came back and he said i am positive for bloodwork that may indicate lupus - so hes sending me to a specilist in 3-6 months.

what am i suppose to do with my hair?! it wont stop falling out, so dry and brittle, i may be bald in 3 months!
i have no other symptoms of lupus, other than this hair fallout out and positive blood work.
i am so confused, my hair just wont stop falling out - i dont get it.

im 18 yrs old, please help

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/31/2011 9:47 AM (GMT -6)   
I'm sorry you're loosing your hair. This sometimes happens with lupus.
Can you you get a sooner visit? Call the specialist's office once he sets up the appointment and tell the secretary you want a quicker appointment.

Have you tried moisturizers on the the dry hair?
Another solution is to get a hair piece or wig. If they seem like an aggrievation find some pretty hair scarves to wear.
Joy

lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 2:09 PM (GMT -6)   
im so confused - i have no other symptoms, ana was 299, so low!
:(
hair is so dry and brittle!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/31/2011 2:14 PM (GMT -6)   
Do you mean 1:299 titer?
That's not low. Anything below 1:40 is low. Mine is 1:360.
You never know what's going to hit you with lupus. Somedays I have pain, somedays I'm swollen, and somedays it's both.
Joy

lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 2:28 PM (GMT -6)   
oh, im not sure, all he said is that i was 299 positive for lupus.
i have NO symptoms. i really dont get it.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/31/2011 4:08 PM (GMT -6)   
This is a quote from a lupus site I found:
"Hair loss: In addition to losing hair because of discoid lesions, some people with lupus may develop a temporary, generalized hair loss followed by the growth of new hair. Hair loss may also be caused by infection or by use of corticosteroids or other lupus medications. A severe lupus flare could result in defective hair growth, causing the hair to be fragile and break easily."
 from: http://lupus.us.com/lupus-skin.html 
 
So the hair loss is temporary and new hair will grow back soon. I know how important hair is to a young woman your age.
 
Joy

lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 4:12 PM (GMT -6)   
im just cutting it all off on saturday, its half way down my back, i think im cutting it up to my shoulders - 6 inches, gone.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/31/2011 7:11 PM (GMT -6)   
Maybe it won't be quite as noticeable then.
Just keep thinking "It will come back. It's not forever."
Joy

lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 7:17 PM (GMT -6)   
I REALLY HOPE that that is the case!!!!! :( :( :(

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/31/2011 8:22 PM (GMT -6)   
Nizoralis an anti-fungal medicine. It is used to treat certain kinds of fungal or yeast infections.

BETAMETHASONE (bay ta METH a sone) is a corticosteroid. It helps to reduce swelling, redness, itching, and allergic reactions. It is used to treat asthma, allergies, arthritis, Crohn's disease, and ulcerative colitis. It is also used for other conditions, like blood disorders and diseases of the adrenal glands.

I don't know what kind of doctors you have seen, but in my mind only a dermatologist would be qualified to determine that your hair loss is fungal.

The usual corticosteroid used to treat inflammation from Lupus is Prednisone, but if you are outside the USA perhaps the Betamethasone is easier to find. But treating inflammation -- I can't see how that would help with hair.

If Lupus is suspected, or another auto-immune disease (that's all an ANA shows, not which disease specifically, but what kind of disease in general), then you should be seeing a rhuemotologist who is familiar with Lupus. (Not all rheumies are good with Lupus.) This may be something you are catching early, so you may have only the hair loss as a symptom.

Use whatever methods you can think of to get an earlier appointment. Heck, call every day and ask for cancellations, tell them how long it'll take you to get there and be ready for their call.

Meanwhile, I agree that cutting your hair shorter will help with your appearance. But hair loss is an early symptom of some thyroid diseases as well as lots of other things - I might consider a endocrinologist before a rheumatologist. Heading straight for something like Lupus as a diagnosis seems extreme when so many simpler things like diabetes can account for hair loss.

said...
What causes excessive hair loss?

A number of things can cause excessive hair loss. For example, about 3 or 4 months after an illness or a major surgery, you may suddenly lose a large amount of hair. This hair loss is related to the stress of the illness and is temporary.

Hormonal problems may cause hair loss. If your thyroid gland is overactive or underactive, your hair may fall out. This hair loss usually can be helped by treatment thyroid disease. Hair loss may occur if male or female hormones, known as androgens and estrogens, are out of balance. Correcting the hormone imbalance may stop your hair loss.

Many women notice hair loss about 3 months after they've had a baby. This loss is also related to hormones. During pregnancy, high levels of certain hormones cause the body to keep hair that would normally fall out. When the hormones return to pre-pregnancy levels, that hair falls out and the normal cycle of growth and loss starts again.

Some medicines can cause hair loss. This type of hair loss improves when you stop taking the medicine. Medicines that can cause hair loss include blood thinners (also called anticoagulants), medicines used for gout, high blood pressure or heart problems, vitamin A (if too much is taken), birth control pills and antidepressants.

Certain infections can cause hair loss. Fungal infections of the scalp can cause hair loss in children. The infection is easily treated with antifungal medicines.

Finally, hair loss may occur as part of an underlying disease, such as lupus or diabetes. Since hair loss may be an early sign of a disease, it is important to find the cause so that it can be treated.


Hope you can see a doctor soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

lupus18
New Member


Date Joined May 2011
Total Posts : 6
   Posted 5/31/2011 8:29 PM (GMT -6)   
got to admit - the doctor was in a medical clinic, and hes a bit loopy

anyways i live in canada in a very rural area, so i have to go to another province to see a specialist - the wait is nothing i can do anything about, sadly :(

im using nizoral and the other stuff, but honestly, its like an animal died in the shower today - the hair loss...was unbelievable, just hair coming out and out and out, everywhere, handfuls - i began crying.

positive test - get negative for thyroid, iron defincy, etc...my mom has a thyroid issue...

i just wish i knew what this was! thought it was telogen effluvium, but its definitely not that...its more serious

this diffuse hair loss is so stressing, its more annoying because i have NO bald spots, so my friends think im losing it - theyre like YOU HAVE HAIR STILL! ..but I KNOW ive lost half my hairs thickness in a month, its so dry and brittle. i dont even know what to do

i want to shave my head..but going to university in september :S might look weird

UGH! :( SOOO upsetting.

thank you!!!!
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