Hi xtina49, I have been on Remicade for about a year also for UC. For me, also, it is the best thing so far at controlling my symptoms. Though it has not put me into what I would call a full remission, so I congratulate you on your remission! That is awesome!

I personally have not had any issues with hair loss from the Remicade. That doesn't mean that it can't happen though. My GI also has me on a low dose chemo drug called metaxalone/6MP. Are you one this drug also? My GI said these two drugs are often prescribed together. In which case the 6MP could cause some hair loss (again I have not had an issue luckily). Are you on any other drugs with the Remicade?

It does sound as if the Remicade could be causing your hair loss. I would recommend looking into what is recommended for cancer patients to supplement when on chemo, low doses of chemo, to help prevent hair loss. This might give you an idea of different supplements that you could try. I think I remember hearing something about B12 or some other B vitamin being helpful in preventing hair loss in relation to medication. You might also talk to your Doctor about what (s)he might recommend you try. Also talk to your infusionist. Mine also deals with cancer patients, so, if your Remicade Dr. is like mine s/he might be able to give you some good information in this regard.

In the worst case. If you do loose your hair like a cancer patient due to your medication. I am very sorry about your hair loss. However, I am happy about the remission of your symptoms! Plus, if, in the worst case you do not figure out a supplement to help, there are some awesome wigs available now days. Not our first choice, but an option.

I hope you figure it out. If I remember what I read about the supplements I will come back and let you know.

Thank you so much, rcaschbacher!!! I don't know why I wasn't notified of your response and am only seeing it now, but thank you for your thoughtful post. I am not currently on any other drugs for my Crohn's and have never been prescribed 6MP, so the main culprit here is the Remicade. I have also noticed a couple other odd but somewhat minor changes in my body that may have to do with the Remicade as well, so I will be sure to bring all of these up with my doctor next week.

I am definitely going to take your advice of asking my doctor what is recommended for cancer patients on chemo who are dealing with hair loss. I hadn't thought of this before. I have also heard good things about B12 from a handful of people and have been meaning to look into it, so I was so happy to hear you mention it! The only good news for me at this point is that my boyfriend has been fully supportive and promised he'd go wig shopping with me if it ever came to that ;)

I really, truly appreciate your taking the time to get back to me on this...sometimes I feel so out-to-sea when it comes to these things because I don't know who to talk to. So anyway thank you again for your kind words and I wish you all the best with your UC!

Tina since you already learned the hard way what poison Remicade truly is, take it from me, a guy who went through every med they could give me, the end result like many was failure. That's why I say ditch these poisons and seek out alternatives. You appear to be a good looking woman anyhow, thus now you have no real reason to dig your hole deeper with this pathetic poison your doctor gives you.

PS what ever you do stay away from j pouches and ostomies! All I can do now is look back and cry :(

xtina,
I have hair loss from a different medication; it falls out in cycles for me and then I'll see fine hair growth come in. I've been dealing with it for about 6 years. I have fine hair as well. I would suggest vitamin b, d and folic acid. May help.

I keep my hair no longer than shoulder length and get it trimmed frequently. That keeps it looking and feeling healthy and fuller. Sometimes changing your part can make it look fuller too. I also use a shampoo for thinning hair and use a volumizing powder on my roots. I know these things won't necessarily prevent hair loss but they can just help you work with what you've got.

Have you tried Humira vs the Remicade. I take Humira with no problems or side effects.