Hair loss while taking Entyvio
I have had UC for the last 20 years and until recently it was kept in remission with Mesalamine (orally) and occasionally with Mesalamine enemas. At the end of last year my GI switched me to Entyvio as it seemed that Mesalamine was no longer keeping it in remission. After about 3 months of being on Entyvio I started to experience hair loss. I have probably lost close to half of my hair at this point. I have had my thyroid checked and it is fine. I never had any hair loss in the 20 years that I was on Mesalamine, even during the few flares that I had. I am quite certain that the Entyvio is what is causing my hair loss. Hair loss was not seen in clinical trials of Entyvio and it is very difficult to find any information online about this. Has anyone on Entyvio had this same experience? And if so, does it stop or is there something that can be done to counteract the hair loss?
--I have not been on Entyvio, but a similar medicine (biologic) caused hair loss for me. I lost a lot of hair on Mesalamine as well. Has your GI doc checked for nutritional deficiency? I did have some luck growing my hair back with vitamins containing Biotin for hair skin and nails...but side effects are increase in sebum . If you can handle that and don't suffer from acne, maybe ask your doc about that. I know how it feels to lose your hair. I am so
sorry you are experiencing this on top of everything else with UC.Thanks for your reply. I am a bit low in iron and I have read that that can cause hair loss although I still am leaning toward it being the Entyvio as I have been low in iron before without it causing hair loss. I am going to start taking iron though just to cover all the bases. I will also look into biotin as I have heard a few people mention that. Hopefully I can get the hair loss under control. It definitely doesn’t help with my mental health.
It is working for me. Right now I am going for my infusions more often than every 8 weeks. Eight weeks is the normal schedule. I am going every 4 weeks but my CRP has come down to almost normal. The unfortunate thing is that other than the hair loss, the inside of my mouth always has canker sores and feels raw (like I’ve eaten an entire bag of salt & vinegar chips). It gets worse right after my infusion and then starts to feel better after about 2 weeks or so but then I have to go for my next infusion and it starts again. I asked the nurse about it last time I was getting my dose and apparently it is something that does happen. I’m probably going to talk to my doctor about switching meds. It is rather uncomfortable having a sore mouth all the time. 
thanks for sharing your symptoms, I was warned about the mouth sores being a common symptom. I am on entivyio every 4 weeks and my main symptom is cold/flu/severe allergies following infusion. I’ve never caught so
Many bugs in my whole life! My RN reported that is also a side effect or could be allergies developing. I also work with toddlers in their homes doing home therapy as an OT. the colds and neurovirus I caught twice , months back to back could also be from having a suppressed immune system.
We all do what we can to manage the side effects or all these drugs we are putting in our body’s, could be worse. I can’t complain.
I will say,
I had my doctor add a bag of IV hydration to my monthly infusions and it was an awesome decision! 🥳 nice boost of hydration I look forward too !
I have not been in entyvio but I was on humira and the same thing happened to me. I was so devastated 😕 After getting off of humira it took about 2 years to get it back to being healthy and a suitable length for me. I’d recommend getting it cut short and evened out and taking biotin! Give it time, it’ll grow back ❤️
How long were you on Humira for? Did your hair loss ever “slow down” while you were on it? I am thinking about talking to my doctor about switching to Stelara although I’m worried it will have the same side effect.
Whenever I wean off prednisone I experience hair loss. I am on Entivyio and have been for just over a year. My hairdresser asked me if I noticed more hair falling out at my last haircut which I haven’t but she said she noticed. I have just switched from Entivyio every eight weeks to every six weeks three months ago.
Maybe a little bit is falling out but not nearly as bad as prednisone makes it for me. I will keep you updated.
Ps- Humira gave me drug induced lupus after two years of being on it. Apparently I was the lucky one percent of people who experience this. 🤷🏼♀️ Haha
