I’ve been taking Humira for over 10 years with no problems. A lot of doctors are conservative with treatment and don’t start you off on biologics, but they work imo.
It worked for me for over a decade. Then I maxed out the dose and had to switch to biologics. I’m still trying to find the right one. I wish mesalamine didn’t stop working because I was stable for ages.
in the beginning my inflammation was in my large intestine and the mesalamine has worked well. They now say i have some mild inflammation in my small intestine, mesalamine doesn’t really work in the small intestine and in addition they want to move to a more modern drug. I don’t have any problematic symptoms and don’t really want to have an infusion every 8 weeks and have to pay copays and plan travel around it so i have not switched.
Lialda didn't work for me because my inflammation is also located in my terminal ileum which is higher up. Here's a chart which shows where the drug starts working. Pentasa (which I get from Canada because my insurance won't cover 🇺🇸), has helped me into remission. [Mesalamine release sites chart](https://images.app.goo.gl/Qym4w1pFi6LXJnCv6)
Get the rx for pentasa from your doctor. Sign up for and follow the instructions on youdrugstore.com which is where I've been ordering from since probably 2020-2021. Note that canadas version is different looking from US (and even UK has different looking pentasa). US pentasa from what I last recall were large blue capsules that were like swallowing horse pills. Canada pentasa version are tabs which are flat and have no blue plastic coating, but like swallowing nickels. Both are not easy but hey, it's better than shitting your pants!
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Made my hair fall out. All my body hair is gone, I look like a naked mole rat. It didn’t work and I just quit taking it today. I hope my head hair thickens up.
Lucky for me I inherited that crazy dense super think wavy Mexican hair from my mom. It still looks normal after evenly losing so much. Handfuls every time I wash it. And I’m gentle, I detangle slowly. My arms look weird. Not even a hint of body hair left. I’ll never need to wax lol.
I just started mesalamine enemas for a flair 2 days ago and it has been working better than any of the biologics that I was on previously.
I had taken it orally before and it did reduce spasming but the enemas appear to be actually stopping my loose stools and allowing me to regain some appetite.
It works for me! I have mild Crohn’s and a conservative doctor. This was the first med I tried and it’s been working for a year. I have no side effects. But my pee does leave behind a purple residue. I read this is a reaction to bleach/toilet bowl cleaner.
I've been on mesalamine 11 years. Never one side effect, but as far as I can tell it never made a difference, either. My doctor wants me on it, as they cited studies that claim long term usage reduces cancer risk. I'm not certain if that's true or not, but whatever.
I’ve had the works done: colonoscopy and blood work/imagining done. Just said “potential” since they refuse to give me my diagnosis without me doing one more abdominal MRI. They’re pretty certain it’s Crohn’s though, since there was no other reason for my obstruction
Did you have a bad experience with the med?
Not bad but not very effective. I was diagnosed in the 90s where this was always first line treatment. If I were diagnosed now I would ask for biological straight out of the gate. Safer more effective and just saves you so much illness.
It didn’t work for me but I had zero side effects.
sorry to hear that didn’t work! has anything been effective in your treatment, if you don’t mind me asking?
I’ve been taking Humira for over 10 years with no problems. A lot of doctors are conservative with treatment and don’t start you off on biologics, but they work imo.
It worked for me for over a decade. Then I maxed out the dose and had to switch to biologics. I’m still trying to find the right one. I wish mesalamine didn’t stop working because I was stable for ages.
Seems like IBD folks unfortunately have to switch up medications fairly often. I’m glad it at least gave you a decade of peace of mind :)
Has worked for me for 25 yrs no side effects but they want me to switch to a biologic now
I hope everything goes well with biologics ❤️ glad to hear that you have had 25 years of positive experience with this!
Why do they want you to switch if it’s working?
in the beginning my inflammation was in my large intestine and the mesalamine has worked well. They now say i have some mild inflammation in my small intestine, mesalamine doesn’t really work in the small intestine and in addition they want to move to a more modern drug. I don’t have any problematic symptoms and don’t really want to have an infusion every 8 weeks and have to pay copays and plan travel around it so i have not switched.
Lialda didn't work for me because my inflammation is also located in my terminal ileum which is higher up. Here's a chart which shows where the drug starts working. Pentasa (which I get from Canada because my insurance won't cover 🇺🇸), has helped me into remission. [Mesalamine release sites chart](https://images.app.goo.gl/Qym4w1pFi6LXJnCv6)
thank you so much, this is super helpful in understanding how they work!
Hi. How do you order pentasa from Canada :( I have inflammation in terminal ileum too and in California
Get the rx for pentasa from your doctor. Sign up for and follow the instructions on youdrugstore.com which is where I've been ordering from since probably 2020-2021. Note that canadas version is different looking from US (and even UK has different looking pentasa). US pentasa from what I last recall were large blue capsules that were like swallowing horse pills. Canada pentasa version are tabs which are flat and have no blue plastic coating, but like swallowing nickels. Both are not easy but hey, it's better than shitting your pants!
**Welcome to r/CrohnsDisease!** * [Join Our Discord](https://discord.gg/VwGHB7qDWw) if you're looking for people to chat with... * [Have you checked out our Rules?](https://www.reddit.com/r/CrohnsDisease/wiki/rules) * [Are you asking a Frequently Asked Question?](https://www.reddit.com/r/CrohnsDisease/wiki/ibd_faq) * Please remember we are not doctors and any medical advice is a suggestion. If the event of an emergency, please contact your doctor, hospital, or emergency services. Thanks and we hope you make friends here. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CrohnsDisease) if you have any questions or concerns.*
Made my hair fall out. All my body hair is gone, I look like a naked mole rat. It didn’t work and I just quit taking it today. I hope my head hair thickens up.
oof as someone with PCOS that side effect really scares me. sorry you had to deal with that!
Lucky for me I inherited that crazy dense super think wavy Mexican hair from my mom. It still looks normal after evenly losing so much. Handfuls every time I wash it. And I’m gentle, I detangle slowly. My arms look weird. Not even a hint of body hair left. I’ll never need to wax lol.
I just started mesalamine enemas for a flair 2 days ago and it has been working better than any of the biologics that I was on previously. I had taken it orally before and it did reduce spasming but the enemas appear to be actually stopping my loose stools and allowing me to regain some appetite.
It works for me! I have mild Crohn’s and a conservative doctor. This was the first med I tried and it’s been working for a year. I have no side effects. But my pee does leave behind a purple residue. I read this is a reaction to bleach/toilet bowl cleaner.
I've been on mesalamine 11 years. Never one side effect, but as far as I can tell it never made a difference, either. My doctor wants me on it, as they cited studies that claim long term usage reduces cancer risk. I'm not certain if that's true or not, but whatever.
It worked for me for 20 years when my Crohn’s was mild. I had no side effects, but was never fully without mild symptoms.
Well you shouldn't start a medicine without a diagnosis. But this isn't a great choice.
I’ve had the works done: colonoscopy and blood work/imagining done. Just said “potential” since they refuse to give me my diagnosis without me doing one more abdominal MRI. They’re pretty certain it’s Crohn’s though, since there was no other reason for my obstruction Did you have a bad experience with the med?
Not bad but not very effective. I was diagnosed in the 90s where this was always first line treatment. If I were diagnosed now I would ask for biological straight out of the gate. Safer more effective and just saves you so much illness.
Worked for me for 8 years! Unfortunately, it stopped working as well about a month ago. Switching to a biologic.