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Prednisone, Lialda, Remicade - hair loss / other side effects

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Posted 9/5/2017 6:16 PM (GMT 0)
Hi All,

I am currently on my third dose of Remicade (sitting getting my infusion as we speak) and was wondering if anyone had any experience with hair loss while receiving their infusions. Currently, my hair is falling out like crazy. I talked to both my Dr., the nurse at my Dr's office, and the nurse administering my IV today and they've all said that it's probably from the lialda or predisone. However, I disagree. I've been on lialda since November 2016 and I was on prednisone then as well - and nothing seemed to happen to my hair.

What I'm hoping is that either a) my body is just mad that it's off prednisone. I was on Uceris (which did nothing for me) for three months, then prednisone for another 2.5 months. Or b) the hair loss will stop after this infusion of remicade. I am wondering if this will be the case because I've only started noticing the hair loss about one full week ago, my last IV treatment was four weeks ago exactly. I've read that UC symptoms can be present closer to infusion dates and I'm wondering if hair loss is the first sign that my body could be flaring. Over the last week or so I've noticed that I'm using the bathroom more, but there hasn't been any blood or mucous - just an increase in the number of times I use the bathroom.

The only positive aspect of this is that every nurse I've talked to today said only one patient complained of hair loss. They said they administer a lot of remicade (I go to a big hospital for my IV's). I really hope that the hair loss is from something else. Remicade seems to be working well for me right now and I'd rather have control of my UC then being back at the beginning with prednisone.

Currently I'm taking a biotin vitamin, prenatal vitamin, calcium, magnesium and zinc vitamin and two pills of lialda per day.

Any advise would be greatly appreciated.
Posted 9/5/2017 6:52 PM (GMT 0)
Every UC medication, all with very different mechanisms of action, and very different active and inactive ingredients list hair loss as a rare side effect. In my mind, that leads me to believe it isn't the medication causing the hair loss but rather a consequence of a UC flareup. Hair loss can happen to UC patients with or without medications. It appears to be a delayed-reaction side effect of a UC flareup that happens about 2-months after the worst of the flare. Flares are hell on our bodies, we can become malnourished, have low blood iron (anemia), and low vitamin's B, B12, and D as a consequence of a flareup. Any one of those things can cause hair loss. Once the underlying issue is resolved, you will have a delayed-reaction recovery. Hair loss will slow, stop, and you will get regrowth of hair after a number of months. If you aren't already, I'd make sure they're testing your blood for anemia, as if that persists then it can make the hair loss worse.
Posted 9/5/2017 7:11 PM (GMT 0)
Thank you iPoop.

I'm trying not to stress about it. The only reason I am worried is that because my scalp is very sore. I can only assume that's from losing hair so much.

I did recently (a few months ago) have my iron levels checked and they were normal. The vitamins I'm on do have iron in them if I'm remembering correctly. I'll check for sure when I get home. I think I'll call my dr. and ask him to send over a lab for iron work, just in case.

UC really sucks. If only it would take my leg or arm hair and leave my head hair alone :-/
Posted 9/6/2017 3:19 AM (GMT 0)
I am on the same combo of drugs and can say without a doubt that it is the prednisone causing me pretty severe hair loss.

I know this because it started before I started Remicade and it's not really a side effect of mesalamine.

I was on the prednisone for a long time before it started making my hair fall out. In fact, it seems that tapering is what causes/increases the hair loss. This is most likely due to the hormonal imbalance that tapering pred causes.

All docs have assured me the hair comes back after you are off the pred.
Posted 9/6/2017 1:34 PM (GMT 0)
Hi noodlesnoodles - I've been off prednisone for almost 3 weeks now. The nurse at during my remicade infusion told me that it's most likely from being on steroids for almost 6 months and now that I'm off my body isn't really sure what to do. It was hyped up for so long and now its not.

On the plus side it's been almost 24 hrs post remicade infusion and I only noticed a few strands fall out this morning. However, I didn't brush it or shampoo it - just put it up in a clip and called it a day. Maybe hair falling out is the first sign that my body is going to flare (since I noticed increase in symptoms about two weeks ago during the same time I was noticing my hair falling out).

I think this is all a guessing game.
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