Hair loss

Mildred1019Mildred1019 Member New Member
I was recently diagnosed with subacute cutaneous lupus effecting my hair follicles (without lesions or scaling).  The back of my head above my neck was completely bald and several bald patches throughout.  The back of my head is being treated with steroid injections which are working, and the spots with a steroid cream. I feel like my hair is getting thinner and new bald spots appear as soon as the others go away.  I was told by my doctors this would or could happen.  Has anyone else had this?  If so, how are you treating it?  I am on a gluten free vegan diet. 
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Comments

  • mylady13mylady13 Member New Member
    So sorry. This is happening to me. I am sad but not giving it too much thought. Have you tried biotin?
  • Finn523Finn523 Member New Member
    As a woman, thinning hair has been on of the hardest things for me to come to terms with. My hair used to be so very thick. For the past three years it has been thinning and it’s very hard to style to try and look presentable. I get Rituxin infusions to control Pericarditis. I do think it has caused more thinning. My hair is curly underneath and straight on top. Most of my hair loss is on the top. It’s discouraging. I have a wig but would rather not wear it because it makes me feel unnatural. I take Biotin everyday. My hair is the same but my fingernails are hard as rocks! 😅
    Anyway, I’m always searching for solutions. 
  • Kking15Kking15 Member New Member
    I was recently diagnosed last month with SLE and noticed my hair was falling out and thinning on my edges also had some bald spots in the back of my head. My hair generally grows fast so nobody knew, but me now, my edges in front are almost gone idk what to do. I take biotin, and I know it takes time, but I just want my hair back to normal it’s depressing to me. How do you guys deal with the hair loss
  • soninsonin Member New Member
    What is biotin? Is useful for the hair loss? I am in the same situation...but with a strong treatment for lupus nefrite since last week. Some advice? 
  • mylady13mylady13 Member New Member
    @sonin biotin is a supplement for the hair nails and skin
  • santisanti Member New Member
    Kking15 said:
    I was recently diagnosed last month with SLE and noticed my hair was falling out and thinning on my edges also had some bald spots in the back of my head. My hair generally grows fast so nobody knew, but me now, my edges in front are almost gone idk what to do. I take biotin, and I know it takes time, but I just want my hair back to normal it’s depressing to me. How do you guys deal with the hair loss
    I was also diagnosed with SLE 2 years ago and my hair was thinning and falling out. most natural way is to use castor oil and egg yolk once a week. also I read coconut oil is also good but personally I have been using castor oil and it made a big difference.  
  • drodeogirldrodeogirl Member New Member
    Santi 
    How do you use the castor oil?  Leave it on for a certain amount of time?
  • karin0923karin0923 Member New Member
    I’ve been trying Castor oil and I think is helping ..!! I put it on my hair and wash it Two days after .. 
  • fermon17fermon17 Member New Member
    I was recently diagnost with SLE and I also suffer from hair loss, I been treating it with a shampoo called "folicure", and it has been really helpfull. Maybe you should try it
  • desireeanndesireeann Member New Member
    When I was diagnosed with lupus nephritis in 2016 my hair got extremely thin and patchy due to my lupus and mediciations. I started taking biotin and also cbd oil twice a day to help with my lupus symptoms. Drinking lots of water and also trying to eat clean helped a lot too. My hair has now returned to being thicker like before and has grown out longer. 
  • reillyreilly Member New Member
    I like many of you had very thick wavy to curly hair. I also started coloring it in my late 20’s due to premature graying. Had SLE, MCTD n RA since teens. After menopause my hair thinned but came back. Was sick from March to October severely from fentanyl withdrawal.
    now my hair is falling out in clumps not big but large enough that it alarms me. 
    Havent yet consulted my internist. Any ideas? 
    Thanks. 
  • GinGin Member New Member
    My hair also thinning, I get soars on my scalp and putting oils on makes it worse. I wash my hair no more than 2 times a week I hate combi g or brushing or anything with my hair cause I lose hair with anything I do, I have wigs but have not worn them. When it gets to a point I don't have enough hair on my head I will have my head shaved and either wear wigs, scarves or turbans depressing yes, but so many other issues to deal with I just can't deal with all of them!
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