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Pumpkin624
05-09-2007, 04:11 PM
Hi Everyone,
Last night my significant other found a new area on my scalp which is completely bald. The last time this happened, the area got bigger and bigger over time. It took almost 2 years to grow it back and it grew back white. I am devestated over this and I was wondering if anyone had any ideas as to how to manage this? I dont want to do the steroid injections as they are way to painful. Another question is, when a new area is found does that mean that I am going through a flare? I always feel bad so It's hard to tell. Can anyone help?

Saysusie
05-10-2007, 01:26 PM
Hi Pumpkin624;
Alopecia is one of many symptoms of lupus. Not all people with lupus develop alopecia, and the pattern and severity depend on whether the disease is systemic or discoid. Treatment should begin early to avoid permanent scarring and may involve the following:
Antimalarial medications (e.g., hydroxychloroquine such as Plaquenil), in severe cases, it will have to be used for months or years. You know about the injections of corticosteroids, this treatment is used for difficult-to-treat lesions. I'm sure that you also know about avoiding the sun and other forms of ultraviolet light and the necessity of using sunscreen. Sometimes, topical corticosteroid ointments or creams for smaller lesions can be used, but excessive use should be avoided. Also, 1) Learn about the cause of your hair loss and treatment options. Be very wary of alternative treatments that have no proven track record or that may cause dangerous or unpleasant side effects.
2) Educate those near to you. Your family and friends can be more sympathetic if they understand the cause of your baldness/hair loss or your concerns about your looks. You may also learn that they are less concerned about the changes in your appearance than you are.
3) Come to us often (or any support group that you find helpful) and we will help you with your concerns, give you suggestions, answer your questions or just be here to understand and give you comfort!!

I wish you the very best
Peace and Blessings
Saysusie

mnjodette
05-11-2007, 04:53 AM
I'm so sorry, Pumpkin. That must be very disheartening. I haven't experienced that aspect of lupus, although my hair has gotten considerably thinner - and the bathroom floor is often a mess after I shower (lot's of hair fallin'!) And my thinner hair is so curly (that's new!) it's just weird. I suspect it's just another lupus thing, but no bald spots. My heart goes out to you - the things that affect our physical appearance are very hard to take, I think. Getting the 'steroid' puffiness, the skin rashes, and things like hair loss - very hard to make those adjustments. We're here for you - doesn't make your hair grow back, but know that everyone here understands how you feel about these changes to your body. If you have a good hair dresser, they may be able to help cut and style your hair in a way to help mask the spot until your hair grows back in. Be careful about trying to color the white spot, though. I understand that coloring can be very hard on your hair when this happens. There are others on the forum that can speak to this issue better than me. Take good, care, Pumpkin!

Jody

Pumpkin624
05-14-2007, 05:03 PM
I want to thank both of the responders to my question concerning Alopecia. As you both can imagine, I am devestated by the changes going on with my body but I am trying to keep up a good attitude. Luckily, my hair covers the spot but I dont know for how long as this tends to get larger before it gets better. I guess I will do my best to treat it with the less invasive treatment since I dont think I can take anymore pain or suffering. I appreciate all of you who take the time to respond and read my posts. God Bless all of you!

MARYCAIN
05-18-2007, 09:03 AM
Pumpkin, it's really important to protect your hair and your scalp as much as possible - a good quality shampoo with UV protectant, and wearing a hat anytime you are outside, will help protect your hair. I found that a shampoo with amino acids - there are several good brands - helped slow some of my hair thinning and loss. I also don't use blow dryers, curling irons, or anything else that will damage my hair. I've lost almost all of my hair three different times, but fortunately it has always grown back. However, it is a different texture and color. My hair was always black, thick and poker straight - it grew back in super curly and almost red - my family calls it my little orphan annie look.

wisconsingirl
05-31-2007, 11:20 PM
Pumpkin - I've had discoid lupus and alopecia for several years now. When I first developed it, there was one spot of hair loss. When the hair somewhat grew back it was white in color. That one spot has now developed into two. Although some small hair growth occurs in those spots, it is still thin and patchy, with redness underneath. I've begun to think that the spots lose what little hair they have at the change of seasons. Therefore, I've started to see my dermatologist at the start of a new season to get injections, in the hopes that this will prevent the hair loss. So far, so good. I also use creams, but haven't seen much benefit from those, and frankly I have so many different creams I have a hard time remembering what goes where. I also wear a short hair style, which allows me to manipulate my hair better and to cover those sections. I relate to your frustration!!! I am very self-conscious about the situation. Hope some of this helps and please, if you find something that works for you, share :)