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Entyvio and hair loss
My daughter had a Crohn’s flare this past year which culminated in surgery in August. During this time she has lost approximately 40 pounds. She came through the surgery fine but had no appetite and found it difficult to eat after the surgery. She is finding out what food she can tolerate now. She has been on Entyvio infusions and her last one was in September. Her hair is falling out by the handful. She is taking several medications, but we are thinking it is the Entyvio. Has anyone with Crohn’s suffered a severe hair loss? Has anyone had this happen due to Entyvio? Has the hair loss been permanent or does it grow back after a while?
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I too have been losing my hair and I have been on Entyvio for 4 months now. My hair stylist said she believes it's because of medication and she said to take collagen which is in powder form and she recommends putting it in a warm or hot liquid so it will dissolve. I put it in my green tea and I also take biotin every day. I have always had really thick hair but now it is already so thin and I'm seeing my hair everywhere! LOL, hopefully the collagen peptides and biotin will help. I suffer from Crohn's disease and the Entyvio has really helped me so I don't want to go off it. Take care everyone!
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1 ReactionMy husband has just finished his 3rd Entyvio infusion and had noticed hair loss by the handful when he showers. We are waiting for a doctor call back to discuss this. I'm glad I found this group. Stay safe.
Hello @jamr and welcome to Mayo Clinic Connect. I understand that your husband is experiencing significant hair loss following his third infusion. It sounds like you have read through this discussion and found the experience of other members to be helpful.
Will you keep us updated once you are able to talk to your husband's doctor?
Hello, saw your message, same thing is happening to me now (third dose on December 2nd and hair is falling out like crazy), can you tell me how long before your hair loss stopped? Did you take the fourth dose?
Hi @irishmist718, I wanted to welcome you to Mayo Clinic Connect. What a discouraging situation when you take a new medication for one ailment and then something completely new pops up. I am glad you decided to join the conversation as you can see there are several other members like you that are experiencing this.
Have you spoken to your physician about the side effects of the medication?
@irishmist718 - I read up about Entyvio and hair loss. According to the company hair loss was not found to be a side effect in the studies. However, they are aware that many report hair loss. Recommendation was to speak to your doctor.
Thank you!
Yes but, like the makers of entyvio, he said Entyvio doesn’t cause hair loss. ( I am here to tell you, it does!). My Hair loss is significant, i’m just hoping to find anyone here who experienced the same thing but can give me a timeframe, when to expect this to stop Or hope that it will stop. Thanks!!
As you can see from former posts, I do know about hair loss with entyvio. I can’t give you an exact timeline, but I can give you hope. According to my former info, she had Crohn’s surgery at the end of August 2019. Her hair started coming out in September. She continued with the entivyo infusions until January or February of this year I think. Unfortunately she had lost all but a few strands of hair. It broke my heart. Her hair started coming back probably sometime in the spring and is now fully back. I think she has gotten it cut at least a couple of times as it needed shaping. Her hair is growing like weeds now. The person that cut her hair told her to take prenatal vitamins and use hair conditioner that does not rinse out. She had beautiful hair down to her waist when this started and now it is touching her shoulders. I don’t know where you live, but the timing for her was just right. We live in NJ, so wearing knit hats during the winter worked and she wore ball caps in the spring when it was coming back in. Her doctor also did not know that entyvio caused hair loss. The drug company should tell people...maybe they know people will not want to take it if they know. There is light at the end of the tunnel. I think you will be fine. Take care.
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2 ReactionsI have UC. I am in the same situation. I was on Lialda for 7 years. Hair was great. It no longer works and I got a flare with my UC. I started Entyvio and had my third dose this week. My hair is thinning. Granted, I have a lot of hair but is this going to subside or will I continue to lose hair until I have none? I still need to shave my legs, etc. so I have hair growth. I need to pull out of my flare so I’m taking the Entyvio but at what cost? DOES ANYONE KNOW if you continue Entyvio will hair loss remain or DOES IT SUBSIDE after the loading doses. THANK YOU FOR ANY INSIGHT! Soooo appreciated!!!