HealingWell
Search Close Search
☰

Ongoing Significant Hair Loss Months After Being OFF Steroids

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/24/2010 3:53 PM (GMT 0)
Hi folks. I've been reading past posts on this forum about steroids and hair loss, but am looking for any specific information related to how long (in your experience) hair loss/ thinning lasts after weaning off steroids. Everyone seems to write that "eventually my hair did grow back"-- but they don't indicate how long the hair loss went on for before this happened.

My situation: Pretty active UC, and now it looks like I also have Crohn's (patchiness in terms of where the inflamation is). I'm 39. Diagnosed at 26. Was on pretty low dose methylprednisolone for the past 3 years (sometimes went as high as 12 mg, usually only around 4-8).

My hair began to fall out when I went lower than 6 mgs during the taper (which was about 2.5 months ago). I've been completely off of them for about one month and it just keeps falling out. My serum ferritin level a month ago was 24, so I'm taking two slow-release iron tabs per day. Have the Vit Bs, including biotin covered.

It's just really scary-- I've lost at least half of my hair, and if it keeps up, there won't be any left-- it's really showing now (my scalp). My guess is that I have pretty severe adrenal fatigue-- but I don't want to go back on steroids to fix this.

Has anyone tried tiny doses of hydrocortisone (not for the colon but for the hair loss)?

My colon seems pretty okay, so I don't need to be back on the steroids for that (Mutaflor's helping on the colon front... I'm allergic to 5-ASAs).

Thanks!
Posted 9/24/2010 4:39 PM (GMT 0)
I think low iron caused me to lose hair. Maybe you should get your iron checked again and see if it has improved.
Posted 9/24/2010 6:50 PM (GMT 0)
I got so sick with my first flare that three months later my hair fell out (from sickness). At the same time I was on prednisone and it made my hair come in really thick at first. As I tapered, the hair went back to normal (meaning severe loss because of illness) I think the Asacol also caused hair loss. As you taper off pred you do lose hair. I would say it would go back but it would be a slow process. Right now I'm on 3 mg. pred every other day and my hair is thin at the sides of the scalp in front. I doubt unless I really lower my asacol (now at 9 a day) would more hair come back.

Have you tried Biotin? I would not go on any form of steroids just to keep your hair.
Posted 9/24/2010 7:47 PM (GMT 0)
hi all, ive lost about 40 % of hairloss on the prednisalone or so i thought but it was actually the trauma of the first flaire up, the flaire up that i have now has lasted 6 months the prednisalone i was on for 11 weeks and no let up, im now on azathioprine and im having the same againm thinning,

the hairloss and thinning does freak me out as my child lost her hair to alopecia, and i started my own charity in uk for alopecia so im well clued up on hairloss but t oesn mae it an either for sure

anyway, the za is making me feel so sick its horrid x

Posted 9/25/2010 12:52 AM (GMT 0)
I was very sick Feb to April and I am still losing my hair. I have been told it happens sometimes when we are very ill.
Good news is it's growing back. Bad news is they say it could continue to fall out for 6 months or more.
Posted 9/26/2010 7:39 AM (GMT 0)
if you're on asacol or pentasa, it's common to lose your hair. i've been losing mine for two years. if you get sores on your head where the bald patches are, you can ask your doctor about Luxiq foam (which is a corticosteriod, but it works) or if not, eyeliner works well on small balding areas and i got extensions to cover some of my bigger bald spots (the one thing to note is that if the roots are falling out everywhere, the extensions may fall out. my hair loss had some pattern to it, so we were able to place them in pretty safe areas). hope this helps.
✚ New Topic ✚ Reply