: Feb 2015 – July 2016 :
Hello, friends! Welcome back to the blog!
Thanks for being here for part three of the Remicade series! If you missed part one “What to Expect for Your First Remicade Infusion,” or part two, “How to Be Your Own Advocate on Remicade,” hit the easy button by clicking on the blue!
Remicade was my miracle drug. Its sweet, sweet elixir was what my swollen and inflamed colon needed. I was so happy with the results that I quickly grew accustomed to the regular trips to the hospital every eight weeks.
I memorized the maze of the hospital corridors that led me to the infusion center.
I knew exactly what clothes to wear to the be most comfortable Remicade receiver I could be.
I even got used to packing my own saltine crackers to supplement the ones the hospital offered—or perhaps I brought them in fear that they’d be out—to satisfy my post-Remicade salt craving.
I got in a routine, found my groove, and learned to relax and—dare I say, enjoy!?—my regular, relaxing infusions.
Besides the infusion taking up half my Saturday every eight weeks (drive time included) I had my life back!
My energy was up.
I felt confident leaving my apartment and not having an escape route to the nearest toilet.
My cramping and writhing colon was finally at peace and digesting foods as it should.
Now, as wonderful as this all sounds (and it was!) Remicade is not perfect. No medication is. Like all drugs, Remicade had its drawbacks…its side effects.
Groan. Those dreaded words. The phrase all patients hate to hear, yet can’t avoid.
Here are the major side effects I dealt with, and some solutions that helped remedy them!
1. Hair Loss
This was the most staggering side effect for me. I wouldn’t say my hair is extraordinarily thick or thin, but, boy, 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.
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.
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! Almost looked like I had taken scissors and carelessly snipped at the hair behind my neck.
Solutions for Hair Loss
A) Utilize Hats & Scarves
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.
B) 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.
C) Protect & Prevent
To prevent any more thinning or damage, I refused to apply any heat directly to the crown of my head. No hair dryer. No straightener. No curling iron. I’d still dry my hair in the winter months, but spare the emaciated strands of hair.
D) 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) 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 sit there without washing, but I have to say, I caught my hair growing back noticeably thicker and stronger.
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.
Let me tell ya, 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. (Subscribe to the Newsletter to find out the science behind this. Trust me, you don’t want to miss out on this email!)
I noticed small patches of red skin with raised, itchy bumps on my chest and face, mostly around my jaw line. They weren’t world-shatteringly itchy, just enough to be a mild nuisance. I covered up the red with makeup, scratched occasionally, and called it good.
Solutions for Rash
Like I mentioned, if you experience this on the small-scale, some extra cover up and concealer might do the trick! At least with the aesthetics, maybe not so much the itching.
B) Discuss Options with Your Doctor
On the flip side, 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.
If it’s really bad, your doctor may increase your pre-meds (this rash is the reaction the pre-meds try to prevent) or possibly consider taking you off the drug. I’m no doctor, so only your GI will be able to decide what’s best for you.
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. It’s also good to keep in mind that your doctor will tell you to not go to your scheduled Remicade infusion if you have a cold or feel like you’re starting to get sick.
Like in Chapter 7, “The Connection Between Tonsils, Tonsil Stones, and IBD,” I recommend Zinc tablets and Emergen-C packets at the onset of a cold.These preventative measures really help reduce the length and severity of my colds.These three symptoms were the main reactions I experienced on Remicade. To me—despite the self-consciousness I felt with the balding and the reddish face—these side effects were less severe and much less consequential than Prednisone’s side effects.
Remicade’s benefits FAR outweighed these reactions, and I lived happily ever after in remission.
LOL, at least until July 2016, but that’s another story for another time. (Like next week’s blog post!)
Have a great rest of your week and a wonderful weekend, friends!
In The Comical Colon’s Facebook group, let’s start a conversation:
Have you experienced side effects from Remicade? If so, what were they? What solutions did you discover helped with these reactions? We’d love to hear your story in the private Facebook group!
I truly believe that the way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc. is to engage in community and share our experiences to help others along their journeys. Let’s learn to share our fears, our trials, and our triumphs to find the comical in the deepest, darkest crevices of our guts.