I don't have an answer beyond my own experience. I've had hair loss for about 7 years, started before Remicade infusion but got much worse after treatment. It was so bad teenage girls would point to me and laugh. Not good for any self-esteem my Crohn's had left me! I'm afraid that my gastro doctor saw a 50 year-old woman with bald spots and said pretty much, "Why do you need hair anymore?"
Anyway, he's no longer my doctor but the new one was also strictly focused on gut issues and anything going on in the head didn't concern him! But at least he helped me with the gut stuff and eventually, with Remicade started, I felt well enough to care about myself again and I tried wearing a wig. It was too uncomfortable and I switched to hats. Eventually, I went to a dermatologist who was a hair loss specialist. She thought to test for things like thyroid, iron, etc, and when it turned out I had thyroid and ferritin deficiency, I began treatment for those two things. (Who knew you could have more than one health issue at a time?
Not any of my regular doctors, that's for sure!) She also recommended I use 5% Minoxidil as directed.
It took about 6-7months of thyroid tx, iron supplements, and Minoxidil before my hair was less obvious. It is still very thin and there are some barely covered spots and I look at pictures of myself with my naturally big 80s hair and I don't look like the same person. But I've decided I can live with it as is. I don't feel as self-conscious as when there were giant gaping holes! I wish I had investigated sooner. Maybe it wouldn't have helped, but the thinking seems to be to catch it early.
That's the main thing I want to tell you. Go to a specialist who cares that you care about your hair loss! There may be stuff you can do to mitigate the effects of the Remicade. There may be other causes that you can address.
Remicade will cause hair loss in many people. I don't know that it will ever stop while you're on Remicade. The iron, Minoxidil, and thyroid treatments I use do help spur enough new growth that I'm not as devastated by the loss from Remicade as I was before I started them.
Good luck. I sometimes feel like doctors are like the electrical contractor who comes to fix your electrical outlet and punches a whole in the plaster but doesn't care that it looks bad and needs re-plastering and repainting because the outlet's fine and the wall is not his department.
