Lupus And Hair Loss

Discussion in 'Hair Loss' started by Mynappturalme, Mar 30, 2008.

  1. Mynappturalme

    Mynappturalme Member

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    Hello to you all,

    Recently I have been diagnosed with Lupus and wondering if there are any ladies out there that have lupus, fibromyalgia, or any autoimmune disease. If so, have any of you had any problems with hair loss or shedding? If so, can you please share how you have dealt with it?

    I've been using Dabur vatika shampoo and deep conditioning my hair and that seems to help so far.

    I've had to work so much harder on my hair because I just don't have the energy to do anything to it. I wash it, condition it, and put in a pony tail and go. Have any of you been able to get over this hump and style your hair on a daily basis?

    Please help!!
     
  2. aloof one

    aloof one New Member

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    I think a lot of the hairloss comes from the meds. Steroids made me shed. I haven't been taking the medicines because the doctor told me I was in remission. I am thinking if I went back on prednisone or whatever its called the shedding would come back. They tell you to expect a change in hair texture or color or density. I didnt' really notice that.

    I would just oil my scalp or do whatever you feel and put it up and leave it be, especially if you are tired all the time. Sometimes you have to balance stuff out and decide what is more important everyday. I found my hair at the bottom of the list--- I was always out of energy when I flared up. It was like... "Should I shower today or do my hair? Clean up or run errands?" I could never do everything because I knew that would leave me exhausted.:nono:

    ETA: BTW- I suggest you keep up your regimen and invest in some clips as well, the ponytail holder could tug your hair and it is probably already prone to falling out so you don't want to stress it more. I would also consider wrapping it or cross-wrapping and wearing a scarf around the house just to keep it protected. I found myself taking naps like half of the day whether I was on a couch or in bed or sprawled on the floor on my beanbag, lol. You never know when youre gonna need to put your hair up.
     
    Last edited: Mar 30, 2008
  3. Everything Zen

    Everything Zen Well-Known Member

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    Hello Miss Lady, I'll be keeping you in my thoughts and prayers. A friend of mine lost her mother to complications with lupus in college. I would keep up a simple healthy style like braids, wigs, or a sew-in- something simple to manage. Also keep up with your vitamins and deep conditioning. I know how important our hair goals can be but this disease is no joke. You need to focus on your health and try to find a way to manage your disease first. I'm believing that things will get better for you.
     
  4. msa

    msa New Member

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    I have to agree with ALoofone...my meds have been my problem. It seemed like once the meds actually started working (plaquenil at the moment) my hair started falling out...and by falling out I mean a sandwich bag or more full of hair every time I washed. When I first joined I posted about this as well and one of the other members pointed me towards Dsylla (who has AMAZING hair and advice to match). She was really really helpful so you might want to pm her.

    Like you, some times I don't have the energy to do anything to my hair because sometimes it's hard enough to just shower, let alone wash, condition, and detangle a whole head of nappy hair. Right now, the way I'm dealing with it is braids (which really helps with being able to ignore my hair coming out).

    My hair did not start falling out until a few months after I started my medicine so I would say keep a close watch on it and work with your doctor if you begin to have problems. Hope this helps!!
     
  5. LadyBlu

    LadyBlu New Member

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    I was diagnosed with Lupus last year and I have just started to experience thinning throughout my head. I started to go natural after my diagnosis, but got frustrated with the dual textures and relaxed. I would say really research the disease and keep your head up. It is not the end of the world...just a little inconvenient at times.

    Ironically, a lot of things suggested on this board for hair growth can help with your Lupus. Eating a healthy diet rich in protein and fruits and veggies works wonders. MSM will help with the aches in your joints. I have actually found that regular exercise helps me because it helps keep my joints (I ache more in my elbows and knees) lubricated.

    I also found that hollistic approaches have made a huge difference with me. I stay away from preservatives and additives (as much organic foods as possible). I also get accupuncture and do Yoga to help with the muscle aches.

    You are going to have some days where you are really in pain and will need your meds, but I was determined NOT to let this disease stop my life! I am still very active in the gym (though I can no longer compete) and I live a very full life. I will be praying for you.
     
  6. Mynappturalme

    Mynappturalme Member

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    Thank you both! Actually, the only time I took any meds was when I was in the hospital (steroids). I see my Rheumatologist on the 16th and they are going to do more testing. My doctor said that I will not be given any medicine until then.

    You are so right, I have been trying so hard to prioritize my time between my own time, work, kids, and a relationship and it has been so hard.

    I will definately keep up the vitamins and the conditioning, I deep condition my hair more often now because of all of this. When I am at home I keep a satin covered pillow upstairs and one downstairs just in case.
     
  7. msa

    msa New Member

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    LOL. I have to cosign on this. I have scarves/bonnets everywhere (my room, the living room, my best friend's house...). I even have one in the car just in case I'm at someone else's house and I need to lie down.
     
  8. LadyBlu

    LadyBlu New Member

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    :lachen:I am the same way! People think I am crazy when I pull my silk scarf out of my purse. I fly a lot with my job and you better believe I tie the hair up to sleep on the plane!! It's amazing the kind of lifestyle changes we have to make for the sake of our hair (I mean Lupus).
     
  9. scribblescrabble2

    scribblescrabble2 New Member

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    Dsylla has lupus, you should pm her. She has long gorgeous hair.
     
  10. aloof one

    aloof one New Member

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    :giggle::giggle::giggle: I would leave stuff in my friends rooms on purpose. They used to be like... why are you leaving your head scarf in my room? You tryin to tell me somthin?:rolleyes:
     
  11. Mynappturalme

    Mynappturalme Member

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    I texlaxed my hair not too long ago because it was too much trying to work with my hair, but now I regret it and I am transitioning back to all natural. Since I will be using meds soon (Plaquenil was mentioned) I think it my be best for me to go back to natural. I guess I'll just feel better if I do.

    I've seen Dyslla's hair it looks so thick and beautiful! I will definately have to talk with her. Thanks.




     
  12. Mynappturalme

    Mynappturalme Member

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    Thank you! I've been thinking about becoming a vegetarian again. I am trying to get back in the gym because I am sure that will help me alot. Plus I have gained so much weight, that has got to come off!






     
  13. Mynappturalme

    Mynappturalme Member

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    Thank you all for posting,

    Now I really do not feel so all alone, it's nice to know that there are other people on here to talk to that understands what I am going through with the lupus and the hair.

    My friends think that I am hair obsessed and all except for one does not understand the lupus (she has fibromyalgia) so I can't really talk to them about it, so to you all, thank you for your prayers and encouragement. I can't begin to tell you how much I love this website and the support that it gives.

    I've been feeling down in the dumps and I think has more to do with my hair than the lupus :perplexed. Maybe I am hair obsessed.
     
  14. TLC1020

    TLC1020 Well-Known Member

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    My sister was dignosed with Lupus, at first she didn't have any problems then last year her hair fell out in patches :nono:. Me, my mom and my sister were crying b/c although the doctor said her hair will eventually, it was just sad and we didn't know how to cope with the various stages that being a person with Lupus has to go through. Her hair is growing back now but her texture has changed to a softer texture, I told her she need some protein to give her hair some strength, then when she went to the doctor he told her she needed some protein but internally, so she's doing better now.
     
  15. Mynappturalme

    Mynappturalme Member

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    I am so glad to know that your sister's hair is growing back and that she is doing better now. I will have to make sure that I have more protein internally.

    I cried when my hair began to fall out, to make matters worse it started to fall out after I went to a hairstylist for the first time in years to get my almost apl hair flat ironed and she cut it to shoulder length:swearing:mind you I did not give her permission to cut my hair..anyway that's another story and I get highly upset thinking about it.

    Wow, my new growth is so different now, it is sooo curly. I have a ton of new growth right now which is great considering all of the hair loss and shedding that I've had. Fortunately it's doing a little better.

    I pray your sister continues to do better, this lupus thing is no joke physically or mentally.
     

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