ivig and thinning hair?

    • Anonymous
      November 16, 2010 at 10:13 pm

      My daughter has been getting ivig for about 1 1/2 years. I have noticed that her scalp is very sensitive and when I brush her hair, it comes out easily! Is there a connection? Anyone else with this problem? Thanks in advance.

    • Anonymous
      November 17, 2010 at 1:30 pm

      Yes, it caused my hair to fall out, not in clumps – just got thinner. It is starting to come back in now that I’ve been on Vivaglobin for 10 months. 🙂 P.S. the package insert says one of the side effects of IVIg is alopecia… had to look that one up but yes, it means hair loss.

    • Anonymous
      November 17, 2010 at 3:04 pm

      I have noticed scalp tenderness and I lose a lot of hair too. I am not on IVIG. Not sure what is causing my ongoing issues yet.

      I think I saw online that if you take folic acid, it can help. Just a suggestion.

    • Anonymous
      November 17, 2010 at 10:59 pm

      But it was the period between onset and before I’d gotten IVIG, and then? Later at times after several surgeries and a couple of traumas.
      My take on it all is that with CIDP, your immune system goes whacky [for lack of a simpler way of putting it] and it’s attacking everything! Or, into overdrive in different areas? In my case it was the ‘lymphatic system’ big time. I’d not sweated for over a year from my onset until I’d started the IVIG! Big changes to your body!
      Check out this web site? [Got it somewhere else]
      Go to the index on the left and click on ‘diabetes in skin disease’; then really read the ABSTRACT and the INTRODUCTION . Said to me a lot about what’s going on with the dry or itchy skin, etc. A whole lot.
      Good luck folks! Slather on some more non-itchy glop and get on with things!

    • Anonymous
      November 18, 2010 at 12:52 am

      I googled hair loss and ivig and see a connection. She also takes meds for arthritis called mobic. Who knows. You guys are a big help to us.

    • Anonymous
      November 18, 2010 at 2:44 am

      I, too, am having hair loss. I have noticed it as far back as a year or so ago. Tonight, I just came from my hair stylist, and she said it looks as if a year or so is a good estimate of when the hairloss/thinning started. She showed me the thickening from the roots, indicating the hair has since started to grow back. I started my getting IVIg in April/May 2009. But, in December 2009, I had twilight anesthesia for exploritory surgery. My hairdresser said she has seen where people who have anesthesia sometimes have hairloss for a period after. We estimate that I have lost over 30% of my hair’s thickness, and that I have about a year to go to grow it back. (I have medium to long hair–it looks so bad now.)

      As for the vitamin B-12 deficiency, I find this topic very interesting. I started noticing my first CIDP symptoms in 2001. In 2003, I had gastric bypass surgery to lose over 145 lbs. Because of this surgery, I am now vitamin B-12 deficient (or so they tell me). My surgeon, along with my endocrinologist regularly check my blood for deficiencies. A year ago, my endocrinologist told me my levels were up, and lowered my dose (previously 2500 mg sublingual daily) to one every other day. Six months ago, she told me to take it daily, but to take 1250 mg (which I have yet to find–cutting it in half for now).

      I’m in the process of finding a new neurologist. I’ll have to ask him or her about the vitamin B-12 thing. Thanks for educating me and good luck to everyone.