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3 Irritating Side Effects of Remicade & Ideas to Help Manage Them

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Remicade was a miracle drug for me. But even though it put me into remission, I still dealt with some pretty annoying side effects. In this post, I share the three side effects I experienced and offer some solutions you can try to help manage them.

3 Remicade Side Effects I Experienced

I was on Remicade from March 2015 – July 2016, and during most of that time, I experienced several side effects. Here are the major ones I dealt with and some solutions that helped remedy them!

1. Hair Loss

This was the most prominent side effect for me. I wouldn’t say my hair is extraordinarily thick or thin, but on Remicade, it became shriveled.

Around the seven-month mark of taking Remicade, I began to experience extreme shedding. It would fall out in clumps in the shower, and the remaining strands became extremely threadlike and brittle.

November 2015: Here, you can see the fine hairs peeping out from behind my ears

What’s even stranger is that it fell out in a circular pattern; the hair I lost was along the crown of my head. So, hair fell out starting at the top of my forehead, the path continuing behind my ears, making a full circle at the nape of my neck.

December 2015: This photo, with my bangs pinned up, reveals the wispy hairs that survived the breakage

Because of this circular balding pattern, the surviving hair that landed on my shoulders was always frayed, uneven, and noticeably shorter than the rest of my hair! It almost looked like I had taken scissors and carelessly snipped at the hair behind my neck.

Solutions for Hiding and Managing Hair Loss

A) Utilize Hats & Scarves

The simplest solution is to cover up what you can. 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.

B) try hairstyles like Ponytails & Half-Ponies

I discovered that these hairstyles help hide the shriveled hair that lands around your shoulders. Though they don’t cover the thinning near the forehead, they are a reliable and effective hair-do for a good amount of the balding. I used lots of bobby pins to pin back the short, breaking hairs.

C) Protect by not using heat

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 spare the emaciated strands of hair.

D) Use a Heat Protectant

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.

E) try Hair Growth Serum

My sister-in-law gave me her bottle of Grow Gorgeous hair growth serum! There are many different types and brands out there, but with this one, I applied about twenty drops per day onto my scalp along the crown of my head.

It felt a little strange massaging it into my head and leaving it to sit there without washing, but it did help my hair growing back noticeably thicker and stronger.

F) Take supplements like BioSil

My GI doctor recommended the supplement BioSil. It gives the body extra proteins that aid in the strong and healthy growth of hair, skin, and nails.

When I was on BioSil, my hair grew back thick! When I stopped taking these supplements, I noticed my hair start to get extremely thin again. I had wonderful long-term benefits from BioSil, and if approved by your doctor, I’d recommend it as well!

2. Facial Rash

This is a common symptom of Remicade. It’s caused by the body thinking that Remicade is an intruder rather than a helper.

I noticed small patches of red skin with raised, itchy bumps on my chest and face, mostly around my jawline. They weren’t too itchy—just enough to be a mild nuisance. I covered up the splotches with makeup, scratched occasionally, and called it good.

Solutions for Rash

A) Apply Makeup

Like I mentioned, if you experience this on the small-scale, some extra cover-up and concealer might do the trick! It might help with the aesthetics but not so much with the itching.

B) Discuss Options with Your Doctor or dermatologist

If you’re experiencing a rash on a larger scale, definitely bring this up to your doctor. Perhaps she can recommend a cream for the itching.

Another idea is to talk with your GI about increasing your infusion pre-meds.

3. Decline in Immune System

Since Remicade targets specific molecules in your immune system, it can reduce the effectiveness of your body’s defense system. This means it might be easier for you to catch colds more often.

Solutions for Lowered Immune System

A) Talk with your doctor about immune boosting supplements

There are plenty of supplements that can help boost your immune system, like zinc tablets, Emergen-C packets, elderberry products, Airborne, and other products that can help reduce the length and severity of colds.

Is Remicade Worth the Side Effects?

Unfortunately, I cannot answer this question for you.

But I can say that for me, yes, despite these annoying side effects, Remicade was very much worth it. For me, Remicade’s benefits FAR outweighed these reactions.

I hope it is like this for you, too!

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