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20 F, Diffuse Alopecia Progressed To Ophiasis

Discussion in 'Tell Your Story' started by suomynona esuom, Jul 13, 2019.

  1. suomynona esuom

    suomynona esuom New Member

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    Hello, I've been diagnosed with lupus (SLE) last year. Suffering from hair loss since I was 12. It began as diffuse hairloss with some batches on the back. The following years were depressing, so I don't remember when exactly I became bald on the back and sides. Hairline is an inch or two above the ears.

    After my diagnosis the hair on top grew back by about 40%. I had thick hair to begin with, so I never feel satisfied. Not to mention the bald back and sides.

    I know prognosis for ophiasis pattern is poor. What is considered favourable for ophiasis recovery? My dermatologist does not believe the hair will grow back. Recently out of despair I started applying all products in hand, castor oil, Ayurvedic oils, a serum. It was completely smooth before, now I see hair springing up diffusely. It's not much, but it's there, one hair in one circle of 1cm diameter. The sides are better than the back. Do I have any chance? It's alright if it takes 1 or 2 years to come back, it's better than never.
     
    #1 suomynona esuom, Jul 13, 2019
    Last edited: Jul 14, 2019
  2. Lyn.66

    Lyn.66 New Member

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    Hey there! I think all prognosis’ of alopecia are pretty hard to predict, but the fact that you have some regrowth at the back is promising! Sometimes different treatments work for different people and sometimes none work at all - maybe it’s nothing to do with the treatments... but if those oils and remedies are giving you regrowth I’d say keep going with them and try not to stress too much about the hairloss, easier said than done I know
     
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  3. suomynona esuom

    suomynona esuom New Member

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    Thank you so much, I should be patient and hope for the best
     
  4. Bookworm

    Bookworm New Member

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    I am on my second bout of Alopecia Areata, and have been researching. Google Alopecia Areata microbiome. There is new findings since I last had this ten years ago. I had ophasis pattern, with diffuse and numerous bald spots. Yes all 3. The thought is autoimmune is in the gut and it can be healed. They actually gave Alopecia Areata to mice and then reversed it by wiping out the gut bacteria. It’s very promising, and yes you have a chance. The lupus is related too. I have started probiotics, Restore to stabilize the gut lining, and am planning on getting a test to find out what gut bacteria I have and how it can be treated. Hopefully oral antibiotics and not FMT. Hope this helps. Take care.
     
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  5. suomynona esuom

    suomynona esuom New Member

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    I've read this too! I actually have lupus enteritis, i.e. autoimmune system specifically targeting my intestine. People with SLE often complain of abdominal pain. I frequent both lupus and Crohn's subreddit since lupus enteritis is relatively rare and my symptoms mimic Crohn's. Hairloss is not really a symptom of Crohn's which is weird. Autoimmunity sucks.
     
  6. Bookworm

    Bookworm New Member

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    Any thoughts on how to get treatments for gut issues, other than diet? Like is there a stool test that identifies the particular problem bacteria or fungus or parasites?
     
  7. suomynona esuom

    suomynona esuom New Member

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    Since my issue is lupus, I take immunosuppressives. I was diagnosed after I tested positive for anti-dsDNA antibody. Lupus can affect any organ, since I had abdominal issues I underwent endoscopy and a CT scan. Procedure for diagnosis of Crohn's is a different, test for different antibodies +endoscopy/colonoscopy. I think treatment is only slightly different, since both are autoimmune diseases. That's as far as I know though. There are so many more diseases of the intestine. I don't really know about stool tests
     
    #7 suomynona esuom, Jul 14, 2019
    Last edited: Jul 14, 2019

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