Remicade and Hair Loss

Hello,

My doctor wants me to start doing remicade infusions and I'm very nervous that I am going to loose my hair. Do any of you have any insight into this? I don't mind if I do I just want to be prepared so I am not surprised if I do.

Thank you,
Kasie

I was on Remicade every 4 weeks for three & a half years & did not have any hair loss either. I too am not aware of this being a side effect. Is this something your dr told you?

Yikes.....I am the odd man out.....

I lost about one fourth of my hair while on Remicade alone. We added methotrexate to prevent antibodies from forming.....and I lost about half of what I had left....AND my hair went from straight to curly and wavy.

But.....No antibodies and the medications make a difference in my quality of life. So I don't even think of not taking them.

I was in the hospital for over 3 months last summer/fall....no Remicade or methotrexate and my hair came back thick.....got out..went back on meds and my hair is now thin again.

The good news is very few people actually go bald...but they may have thinner hair. The good part.....3 hairs under each arm and very few in my legs. Eyebrows and eyelashes thinner but have them..... Not too bad...

Remicade is a game changer! Hope you find and stay in remission.

Clo

Susie / Eddie,

My dad has had UC for over 15 years. His large intestine was removed in 2006, and internal pouch was created from his small intestine. In Sep 2016, he started developing abdominal and anal fistulae. After 2 surgeries, when the fistulae kept occuring again, docs did numerous tests, and confirmed that his UC had advanced to Crohn's. He now has 1 anal fistula, and 1 abdominal fistula with 3 openings. He's had Remicade infusions at 0, 2 and 6 weeks. Can you advise anything?

Hair loss is a tricky one with IBD as you can get it with or without medications.

During flares, you can often become malnourished, anemic, or low in vitamins B or D any of which can lead to hair loss. Hair loss is often a delayed reaction to a flare, it can happen several months into a flare, rather than at the onset. Every class of medication for IBD lists hair loss as a potential side effect, even though all of those medications have very different active ingredients and methods of working, which makes me think the medications aren't solely to blame.

Can it happen due to a medication? I am sure it can, but most certainly I would want to eliminate other possibilities first with some blood work to check your iron levels and various vitamin levels.

Your hair loss should slow, stabilize, and regrowth should begin in time assuming the underlying problem is now resolved. It could take a few months, as these things are often delayed by a few months. Be patient, and good luck!

Monty, I am sorry that I did not see your post earlier. My gi took the approach that each patient should be treated individually with Remicade. We found that doing my infusions every 4 weeks was what worked the best for me. He said if that had not worked we could have done them every 2 weeks. Thank goodness 4 weeks was my magic number.

I do hope that Remicade helps your dad.