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.
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! 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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So sorry you are dealing with all this! I have read every blog. You are a strong lady.
Thanks Anna 🙂 It’s been a rough journey but has showed me to truly appreciate life. And I really appreciate your support, it means a lot!!
My daughter, 17, has crohn’s. Today we were called in to her dermatologist because we went last week because of the hair on the back of head starting at her crown has fallen out and it is also in a circular pattern. He tells us we need to get her off of Remicade. I am nervous about our next steps. She was diagnosed with Sever crohn’s in April of 2018.
Any recommendations?
Hi Ivy, thanks so much for reaching out! I’m so sorry to hear about your daughter’s hair loss. I definitely know what she’s going through. I unfortunately can’t give any recommendations or medical advice, but I can share what worked for me. When I was on Remicade, I had awful hair loss and a minor skin rash, but since these were the only two symptoms, it was absolutely worth it for me to stay on Remicade because of the quality of life it gave me with my ulcerative colitis. I decided to stay on the drug because the benefit outweighed the side effects. I hope that you and your daughter are able to chat more with her GI about Remicade’s pros and cons and figure out the best next steps for her unique situation ? Thinking of you two!!
Thank you for sharing, your blog is so helpful. After how long did your hair stop thinning/falling out? Does it eventually stop falling out after being on remicade for awhile? I might be starting therapy soon.
Hi there! Thank you, I’m so glad to hear these stories resonate with you! For me, my hair continued to thin/fall out throughout my entire time on Remicade. After about a year and a half, I had to stop taking Remicade and my hair started growing back thick and full again. I’m now on Entyvio and experience the hair thinning again. Biologics seem to really affect me in that way. I hope Remicade brings you remission for a very, very long time! I know it can be daunting starting a new biologic, but for me, the pros of Remicade far outweighed the hair thinning 🙂 Wishing you the best of luck!
Hi Jenna! I happened to read your post in answer to a google question. I wonder if Remicade stopped working for you? I’ve been on Remicade for about 18 years now and I pray I can keep getting it. I’ve got Crohns and just had my infusion yesterday. The city I live in just went RED in Iowa,which is also RED for COVID-19. I’m worried that with my immune system wiped out,I’ll be even more at risk. I was googling to see how much my immune system was wiped out….this must be your thought too. I’m staying in the house and so is my partner,Jim and the only thing we HAVE to go outside for is to feed the birds,squirrels and chipmunks. Even to do that,we’ll wear a mask! Remicade has saved me and other than thinning my hair(tho that could be from my Imuran too),I haven’t been bothered by other side effects. Is Entyvio infused also?
Hi Debbie, thanks for your comment! Yes, unfortunately Remicade did stop working for me after a while. I lost response to every other medication I tried as well, which can happen to people like me who also have primary sclerosing cholangitis (PSC), and autoimmune liver disease. I’ve been on Entyvio infusions for 2 years now and have been feeling the healthiest I’ve ever been! I hope your infusions go well and bring you relief. I agree, it’s concerning being immunocompromised in the COVID era, but it’s great that you and Jim are being so cautious! Whenever I have to go out in public, I wear my mask and gloves, and carry hand sanitizer with me. It’s best to focus on what we can control 🙂 I hope your next infusion goes well! Thanks again for reaching out, stay safe and well!
Thank you SO much for all this information!! I was off Remicade for three months and got back on it 4 infusions ago. Just had a small clump of hair fall out and it was really hard to not panic and I was afraid to Google it. Your words calmed me down and gave me so many options. Seriously, thank you!!!
Hi Celeste! Thank you so much for your kind words, they mean a lot! 🙂 I’m sorry you’re going through the same thing with the hair loss, but know that you’re absolutely not alone! I hope the Remicade has more pros than cons for you, and that it’s helping your IBD. ? Stay safe and be well!
Hi Jenna, I finally found your site that deals specifically with Remicade and hair loss!!
I am in tears because reading your story and the other comments, now I definitely know what will happen to me. I have RA and with different oral meds not working, my doctor suggested Remicade. My hair started falling a lot with the other meds- Methotrexate and Arava are two- plus I had other side effects as well. I specifically asked him if Remicade would make my hair fall again and he said no!! This was a huge flat-out lie! My first infusion was December 2, 2020 and my fourth one is coming up on March 24, 2021. I’ve barely made it to 3 months, and my hair is shedding terribly!!! I was diagnosed with RA about five years ago and since then, it’s been one failure after another with meds not working. With Remicade, I have noticed considerable improvement regarding pain and movement. Before this, the pain was crippling! So now that I’ve found a med that works, my hair starts to fall again. I don’t know what I’m going to do. I don’t know when/if I’ll go into remission. My hair is falling more and more with each passing day. My immune system is so terribly compromised- I do not have a spleen, I have Ehler-Danlos Syndrome and PN.
I’m so sorry for the long reply, I just can’t believe I found you! Nobody understands how I feel, it’s such a lonely situation. Thank you so much Jenna for giving me a voice!!
Hi Sandy, thanks for reaching out! I’m sorry to hear that it took so long to find a medication that worked. I know that journey of trying med after med is stressful, so I’m excited to hear that Remicade is working for you and helping with the pain! You are not alone in dealing with this hair loss. In the end, I hope Remicade brings you relief and that its benefits outweigh the side effects. It might be worth chatting with your dermatologist to see if they have any ideas to help with the hair loss. I’ll be thinking of you, Sandy!
This is super kind of you to share! Thank you! A few months ago I started researching the possible caise of thinning at my hairline… I’ve been on Remicade a little over three years with excellent results but actually have had the rash on the face business just as you described on occasion, a few infection type spots in my face (possibly staph!!) and then about two years ago started to notice some thinning or stringyness around my hairline/forehead temple area. My hair is normally very very thick and wavy and any medicine hair loss or illness hair loss that I’ve had in the past has always been diffuse… In other words my entire head and then it returns to normal..but this time I can really tell it seems to be isolated to my front hairline. I’m not sure about it continuing around the crown… What I’m curious is if your hair has improved or remained in better condition whether you are continuing on the supplements or not… Are you still on Remicade and/or
The supplements? I’ve been thinking about switching over to Humira or entyvio as neither are associated with some of the whopping side effects that come with Remicade, but since Remicade has worked so well for me it’s frightening to think about going back to the state of illness I suffered with pretty much my entire life and trying something else. For reference I am almost 50…pretty much always maintaining a healthy and athletic lifestyle! This hair thing is really bumming me out even though it’s not nearly as bad as I imagine I’m sure… Thanks for any further insight!
Hi Katherine, thanks for your sweet comment! I’m sorry to hear you’re dealing with the hair loss and face rash too. They are certainly annoying side effects. I’m no longer on Remicade—I started Entyvio in September 2018 and have been on it since, with no hair loss/thinning! My hair has been growing in pretty normally for a while now, so I stopped the Biosil hair supplement about a year ago.
I’ve heard others with IBD take pre-natal supplements to help with healthy hair growth. I’ve never tried it, but it might be something worth bringing up with your doctor. Whether or not you stick with Remicade, I hope you find a supplement and a medication that brings you relief! Take care, and happy New Year!
Hi Jenna, Hope you are doing well regarding your health issues.:) So the last time I wrote you, I was telling you about how much my hair was falling since being on Remicade. At the time I was also taking Arava which contributed to the hair loss. Well I’ve been on Remicade a little over a year now and there have been some changes. I began taking Viviscal and the hair falling has slowed down and new (albeit thin) hairs are sprouting. The only place that has remained super thin is my hairline- it’s very noticeable.
Also, something that has started for at least 6-7 months now is the red itchy patches along my jawline and upper neck, many times with hives or welts. At times this has happened on my cheeks and have had the butterfly rash with my skin turning red.
I would like to know, when you were on Remicade, did it affect your weight? Well, it has for me! I have gained almost ten lbs and counting! This has me in tears- nothing fits. My feet swell often and my chest has gotten very big. I found out that this could be a possible side effect in women and men. I’m so frustrated. How did you know you reached remission with Remicade? And can a person take Entyvio for RA too?
I sure hope to hear from you, your input is very much appreciated.
Stay well and safe, and have a blessed new year!
Hi, I found your blog when researching Remicade and hair loss. I am currently on Inflectra (bio similar) and experiencing hair loss and my doctor has recommended Entyvio. How long after starting Entyvio did you notice the hair loss stopping/new growth? Did you have any other side effects on Entyvio? Thanks so much for your post it was super helpful.
Hey Megan! That’s a good question. I’d say it took 6 months after starting Entyvio that I noticed my hair starting to grow strong and thick. It probably took around a year for it to look normal again. I hope Entyvio brings you relief and that you see healthy hair growth soon!
Did your face rash go away when you switched to Entyvio?
I’m having a skin issues with Remicade. I get like dry skin, rash, itching.
I did not really experience hair loss, but my hair does feel dry, and kinda brittle.
Yes, it did go away when I switched to Entyvio! With Entyvio, I have none of the skin issues I did with Remicade. I think, for me at least, Entyvio is just a lot gentler on my body. I do still have dry, thin hair, but it’s not brittle/thinning like it did on Remicade. I think I just have unlucky hair genetics, or perhaps it’s due to my crazy immune system. I hope you find a medication with minimal side effects that brings you relief!
Thanks this blog helped out a lot every symptom you explain I’m experiencing at the moment and it’s nice to know I’m not alone. And reassurance This is symptoms of the medicine I am using to get to the state of remission and as you stated, I outweigh the good with the bad and taking the medicine is far more worth it than not.
You’re welcome! Yes, you are definitely not alone in this. Remicade’s side effects can sure be annoying, but I’m glad to hear that the good far outweighs the bad for your case. I hope Remicade continues to bring you relief!