Lupus Hair loss, any hope for regrowth?

[ANN1]

I just found out last week from my Rheumatologist that I do in fact have lupus. This was a complete surprise to me since I don't have any of the "classic" symptoms, some abnormal labs, fatigue, and hair loss. In fact, I almost cancelled my appointment but thought I would go anyway just to "rule it out". Thanks goodness I went!

He started me on Plaquenil but said it would take several months to work.

I'm curious if there is anyone in the same situation having hair loss from lupus? What meds have you taken?

I think at the rate of my shedding, I'm going to need a wig or topper at some point. Does it ever regrow with lupus?

I'm now dealing with more than the hair loss since I have this diagnosis, so much to sort out!

[glo65]

Hello Ann:

I have asked my doctor several times about my hair loss and I always get we don't know, everyone is different. I have yet to try any hair regrowth products because I have so many allergies a psoriasis sore on my scalp which I feel is contributing to my my hair thinner. I only started getting the scalp sores about a year ago.

Like you I was put on Plaquenil and due to the fact that I had a reaction to it (itching like crazy) I did not get to take it long enough to see if it worked. I have spoke to persons with lupus and it seems like the plaquenil is work about 40% of the time.

Lupus like lots of other disease they have no known cause and you simply have to learn to cope which isn't always that easy so, it is nice that we have the internet to find support.

I am not a big fan of medication so I don't take any. I recently sat down with a Dr. who researches autoimmune diseases and she explain to me what is happening to my body and how food plays a big role in how you will feel.

She explained to me that the American diet is devastating on the body of most people but especially on a person with lupus. Most of the things we eat cause significant inflammation in the body which ruin joint, tissue, muscle fibers and so it ............

that being said she recommend that I eat a diet high in veggies and fruit, whole grains.

That milk, meat, sugar, process foods where awful for us. She understood that some people can give it all up or at once so she gave me a few alternatives.

I have been eating lots of fruits and veggies, no red meat and skim milk and I do feel somewhat better.

If you need a friend, support a listening ear feel free to write.

glo

[lisa213]

It has been about a year now since I was diagnosed with lupus. I am also taking plaquenil. It makes me dizzy sometimes. I am also taking levoxyl. My hair has grown back since taking this medication but, it does still have its shedding phase. My hair grew back white the first time.
Since being diagnosed with lupus I have also aquired other autoimmune diseases, such as rheumitoid arthritis sjogren's syndrome and hypothyroidism. I am doing so much better now that my doctor says that he woud'nt even say that I even have lupus anymore. I have to thank the vitamins that I take before I would thank the plaquenil.;)

[Angela]

Hair loss is different for each person with Lupus. Some experience it and others don't. My sister and I both have it and it affects us both very differently. Her's is severe and affects her blood, mine (I say is not severe) only affects a certain part of my spine and also hair loss. With or without medication. My sister has never lost any hair. I couldn't even begin to name the kind of drugs she has had to take...me, I was just put on prednisone first to see if it would help. It did.
I didn't want to be on the steroids though, and I found that eating a raw diet of fruits and veggies, nuts and seeds, I was actually able to send my lupus into remission When I'm not raw, the affects of lupus are there like a lingering hang nail. My joints are in pain, I lose feeling in both legs, by body starts to twitch or get tremors and I become incontinent...oh and I also can't sleep. The raw diet is not for everyone and I feel that each person should do the research before embarking on any type of diet change, but for me personally it worked.
The things that can trigger a flare up in me may be very different for other people. Hair dyes and fumes and environmental molds are mine.

[ANN1]

Thank you all so much for your insight! I don't really know what to think right now. For the moment, my hair loss has stopped and I feel much better overall, less fatigued and sleeping better. I am on a truckload of vitamins plus the plaquenil. I guess I'm going to remain on these things because I'm so afraid of what will happen if I stop.

[natasha]

I originally visited this site a view months ago when I was noticing a dramatic shed. Since then I have been told I "may" have Lupus?? My blood work had a positive anti-DNA which is highly suggestive of lupus. The only symptom I have is hair loss. A rheumotologist suggested starting me on Plaquenil as well to see if it helps. I'm hesitant because hair loss is my only symptom. It is so confusing to be told "you might have lupus". At a loss as to what to do??? Just needed to share with you ladies who have lupus.:o My hair has been shedding since June 2009. I have changed my diet, eat lots of fruits and vegetables, use a juicer, take vitamins and use Nioxin shampoo. My hair loss started at about 100 strands a day. Now I would say it varies from 35-60 per day. It is noticeably thin because this shedding has lasted since June. Some days I don't think about it much but other days it does bother me. Any advice on the lupus and Plaquenil would be helpful?
Natasha

[Angela]

Hi,
I don't have any advice as far as medication goes, but I do know that if you are suspected of having Lupus, it may take sometime before you are officially diagnosed. Lupus is usually difficult to diagnose because it is a disease that can mimic other disorders and diseases. All symptoms do not come on at once but instead tend to unfold over time. I had a borderline ANA but I also had other symptoms suggestive of it as well as it being in my family. There are other diseases that can cause a positive ANA and usually other things must be ruled out first before a diagnosis is made. Typically Lupus is a clinical diagnosis and the blood work can help to confirm it, but having a positive ANA doesn't always mean it is Lupus. Is your doctor trying to rule out other autoimmune disorders at this time?

[Collette]

My best friend was diagnosed with Lupus a year ago, she is suffering from hairloss as well and she doesn't even care HAHAHA she just throws her hands up and shrugs her shoulders.

:D