Chapter 11: 3 Common Side Effects of Remicade & Their Remedies

11 thoughts on “Chapter 11: 3 Common Side Effects of Remicade & Their Remedies”

  1. 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!!

  2. 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?

    1. 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!!

  3. 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.

    1. 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! 💜

      1. 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?

      2. 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!

  4. 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!!!

    1. 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!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.