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Jun 09, 04:06 PM

Dealing with hair loss from biologics

By Jenna Ziegler - Gali Community Member

IBD is an invisible disease. There’s so much more that goes on than some sassy bowels. In my ulcerative colitis journey, there have been some major ways that the disease has stealthily infiltrated my life.

One is that I deal with hair loss. I was on Remicade for a while, and within six months of starting, I noticed that my hair was becoming so thin and brittle that it would fall out. I stopped Remicade for nearly a year, and during that time, my hair grew back thick and luscious, like normal. Now, I’m back on biologics—this time, Entyvio—and my hair has started to fall out again!

The interesting thing is that it only falls out in certain parts of my scalp. It follows a circular pattern—starting under my bangs and closely hugging the stretches behind my ears, and then down to the nape of my neck.

Not everyone on biologics experiences hair loss, but it certainly seems to be a recurring theme. At this point, doctors aren’t sure exactly why people on biologics experience this.

When it was at its worst, my hair would fall out in the shower and when I brushed it. It made me pretty emotional, at first. I love dressing up and letting my long hair flow without it looking like my hairdresser botched it underneath.

I also enjoy going outside, exercising, and playing sports, and it’s much more comfortable when all my hair can stay tight in a ponytail. But I rarely wear my hair up anymore because my brittle, wispy hair is too short to stay inside the ponytail.

If you also experience hair loss, here are some tips I’ve learned to disguise it:

– The simplest solution is to cover up what you can—in style! If you have hats, beanies, scarves, etc. they can be used to conceal the hair loss both around your forehead and the scraggly bits hanging around your shoulders.

– Use tons of bobby pins. The only way my hair looks cute in a ponytail now is to pin up all the baby hairs with bobby pins. It may take a little longer to do your hair, but it’s seriously worth it on those hot days.

– To prevent any more thinning or damage, I refused to apply any heat directly to the crown of my head. No hairdryer. No straightener. No curling iron. I’d still dry my hair in the winter months, but I’d spare the emaciated strands.

– To play it extra safe with the blow drying, I purchased a heat protectant spray and doused the damaged hair with it, just in case any already-thin hair caught wind of the blow dryer.

– Experiment with hair growth serums. There are many brands out there! I used one for about a year, and although it didn’t make my hair look like it used to, I noticed that consistent use would definitely help the wispy hairs grow back faster.

– My GI doctor recommended a supplement with biotin and gives the body extra proteins to aid in the strong and healthy growth of hair, skin, and nails. For me, this is a wonderful long-term treatment, and I plan on taking it as long as I’m on a biologic!

The point is: almost every medication will have side effects. It’s up to you to get creative, do some research, and think outside the box to come up with solutions that will help with your unique situation 💪🏻

IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy symptoms that no one would notice unless we decide to share them.

And I choose to share my story because AWARENESS → FUNDING → RESEARCH → CURES!

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