Hair Loss with ME

Discussion in 'Fibromyalgia Main Forum' started by wacquiebob, Jan 2, 2012.

  1. wacquiebob

    wacquiebob New Member

    I have been losing my hair for many years now with this disease. The last little bit of it is falling out now. I have been to see a dermatologist who biopsied my scalp and found out that I have scarring alopecia. This means balding because my bodies white blood cells are attacking the roots of my hair and causing it to fall out by killing the follicle and leaving little bits of scar tissue beneath the skin (it is not visible to the eye). I would like to know if others and how many others with this disease are having problems with hair loss. If you have, if you could just write in "yes" (no long note needed unless you want to say something about it) I would greatly appreciate it. I am trying to get some research interest in the problem, but others besides myself would have to be suffering also.
  2. kalou

    kalou New Member

    I am loosing my hair too..That thing that you said about alopecia and white blood cells usually occur in lupus..I know many that loose hair.Adrenals and thyroid is other causes

  3. gb66

    gb66 Well-Known Member

    Yes. I am losing hair. Not good for a woman, well, not good for anyone but even more so for women.
  4. debilyn

    debilyn New Member

    ::sitting on the losing hair couch::
  5. wacquiebob

    wacquiebob New Member

    I tried to get my dermatologist to treat me (give me drugs) like a lupus patient to try to save the last little bit of my hair, but she refuses to do so. The biopsy does not show specific lupus type scarring but "general" scarring under the skin.
  6. wacquiebob

    wacquiebob New Member

    Please let me know with at least a "yes". If anyone else has also had a scalp bx or is thinking about getting one, let me know.
  7. simpsons

    simpsons Member

    yes get lots of hair loss have done for years now no tests done
  8. wacquiebob

    wacquiebob New Member

    my hair is still falling out rapidly. I know when the next batch is going to fall out because my very curly hair turns straight just before. When I was on Valcyte for 6 months my hair actually stopped falling out and started growing curly again. Has anyone else had this experience?
  9. wacquiebob

    wacquiebob New Member

    The valgancyclovir stopped my hair from falling out and turned it from straight to curly. I just wanted to know if anyone else taking the drug had noticed something similar. My iron is also fine.
  10. wacquiebob

    wacquiebob New Member

    I am on the upper ranges of the scale for normal T3 T4 & on the lower range for TSH so I really don't believe my thyroid is a problem. Hypothyroidism doesn't cause scarring alopecia anyway. It is in the differential diagnosis of non-scarring alopecia. I was trying to find out if anyone on valgancyclovir ever had any improvement with their hair loss. If anyone else has had this experience, Iwould appreciate it if you could post about it here.
  11. wacquiebob

    wacquiebob New Member

    I looked up on the medical websites that sometimes treatments can include Plaquinil, Methotrexate, Mycophenate, cyclosporin, i.e. the same drugs used for autoimmune problems. The drugs affect the lymphocytes that are attacking the follicles. Since my hair loss had improved on Valcyte I was wondering if the virus in the lymphocytes was triggering the cells to attack the hair follicles. If anyone has had an experience of Valcyte improving their hairless, if even temporilary, please let me know.
  12. wacquiebob

    wacquiebob New Member

  13. manvisharma

    manvisharma Member

    Its better to consult a Doctor rather than pointing out or figuring out the discussions. Hair fall is a panic situation that's why it needs proper care by consulting a Doctor.