Mesalamine is the easiest UC treatment on your body. It’s essentially an NSAID that has a special coating so it doesn’t dissolve until it hits your large intestine. For most people it has no more side effects than just taking ibuprofen. I have been taking it since I was diagnosed in 2021 and haven’t had a single issue since. I think you will do just fine my friend! Keep your chin up 💜
You should get the goodrx app. (If you’re not in the US idk if it’ll apply). Personally, Medicaid for whatever reason decided to not renew my insurance this year (I’m unemployed and disabled, not fun). It’s been a huge help to me. Goodrx has some pretty damn reasonable coupon options for most meds/pharmacies tho and it helps a LOT
Once you enter the type, dose, & quantity of your prescription you’ll get a list of different pharmacy’s prices (using the app) going from cheapest to most expensive. Have your prescription sent to the cheapest/most convenient pharmacy
If you have more prescriptions it’s definitely worth checking those out too, I have no clue how I’d afford my adderall (even generic!) without it. Sometimes still expensive but I’ve never spent more than $75 for one prescription
One note on using GoodRX, if you use GoodRx for any prescription, the money going towards that prescription does not go into your deductible pool for your health insurance. Figured this out a few years ago and it burned me later in the year
I would also check out Mark Cuban’s online pharmacy, cost plus drugs. Drugs there are typically very reasonably priced. It looks like it’s $14 for 30 Mesalamine capsules.
It really game me terrible heartburn for a while but it’s better now. I cut my dose from 4 daily to 2 daily and using the suppository at night. My symptoms were out of control now back at 4 with the suppository and my stomach feels fine. I have a very sensitive stomach so it could be that. I just started on a biologic and will stop taking it in the future
I think it depends on the person. I’ve been taking it for over a decade. I think in the beginning I might’ve had headaches but I don’t get heartburn from Pentasa.
I get it from certain foods like spicy stuff and whatnot but that’s a given.
YUP. I had to scowl the internet to find out it was normal. This was about 5 years ago, but luckily I’ve stopped lialda now and am solely on entyvio because my toilet seats were a MESS. We replaced with plastic instead of wood to help.
Interestingly enough, I discovered that the oxidization is worse with Lialda than it is with generic mesalamine. Had to make the switch to generic three months ago and don't have to wipe down the toilet seat daily anymore.
OMG that’s so good to know. I was on lialda because tricare only covers the brand name (seems silly but whatever). I’m just on entyvio now so no more issues for me either!
You're not supposed to crush them because they are slow release, and by doing that your body will start to absorb it sooner than it should, before it gets to your colon where it's needed. But definitely ask your doctor over a stranger on the Internet like me.
Some people find it easier to take a sip of water first, then put the pill in your mouth and swallow. Some people end up using suppositories or enemas, which once again gets the medicine to the part of the body that needs it first.
I do believe that with practice you can get used to the pills, but I also understand that people might have all kinds of sensitivities or issues that make it far harder for them than it is for me
Honestly op i have an issue swallowing big pills aswell and thought i would struggle with my mesalamine. But the pills are like hydrocoated or something so they just glide down super smoothly. They arent like capsules or the powdery tablets that get stuck.
My GI told me to practice with Mike and Ikes. They’re about the same size.
As a kid I couldn’t swallow pills so I was just told to open the capsules and mix the contents with applesauce. I did it for a few years until I was in middle school and could not stand to eat applesauce anymore.
You basically just gotta train yourself to know the exact position to place the pill on your tongue that won’t make you gag. Also make sure to swallow it with enough water.
Some people that have trouble swallowing pills say taking them with juice helps.
Totally get it. I think mesalamine will help tbh. It has for a lot of us. I even use mesalamine suppositories when I’m flaring. It helps as well. Best of luck. Keep us updated 🙏🙏❤️
Hi. Are you on your mesalazine long term?
I’m new to Octasa, I did a month and now on 3 months then repeat prescription if needed.
And I’m going through a flare up so have started suppositories along side Octasa.
I keep reading different views of people coming off meds or saying you have to stay on long term.
Yes I’m on it long term. Nice. I’m on Apriso generic which is 4x a day mesalamine. I’ve been on it since 2010, it was asacol back then and 12 pills a day when I was diagnosed with proctitis and then left sided pan colitis. It’s definitely the lowest level maintenance med. I’m hoping I can stay on it with going to other ones. Crossed fingers!
No side effects for me either. Some people have mesalamine intolerance which is like a worsening flare - it would start almost immediately after starting the drug.
This happened to me. It got so bad I was vomiting and my docs decided to switch me to a biologic instead. So it’s rare but it does happen. If you start a new med and it makes you feel worse, don’t be afraid to advocate for yourself and tell the doctor it’s not working.
Given a choice I would avoid all medications but it’s abundantly clear that without them my body won’t function well in the environment in which I live. I blame polluted air, food and water (PFAS and microplastics everywhere, including in virtually every person’s blood stream), all of which have been found to be associated with UC. Every time we eat, drink and breathe we are ingesting something like medication except it hasn’t been found to be safe and effective like mesalamine. Just the opposite.
I’ve been on since 2017 or 2018 (I forget which at this point). No side effects here if that’s comforting. It’s the one constant in changing meds for me.
Also just wanted to validate though that changing meds can be scary and unknown. This whole community gets that. Sending well wishes your way, friend!
Been taking it since December last year. No side effects. It’s an amazing drug, but bear in mind its effects are very slow, I found my symptoms slowly improved over a period of 6 months. So give it time and keep faith!
The only side effect I’ve noticed is that my urine reacts with bleach and leaves a reddy purple colour in the toilet lol.
There was a previous post about it and doctors letter verifying it.
Most people have zero problems with Mesalamine. However, do be aware that however rare, some have a serious reaction. Read the brochure that comes with the pills. If you have odd symptoms arising, contact your doctor immediately.
I was initially prescribed mesalamine suppositories. Became fed up with that routine and was switched to oral a month or so ago. I, too, am terrified of side effects. I had mild headaches for a few days, but since then no side effects.
Been taking it for 8 years. No real side effects for me- hair loss starting to see it a little, however prob more related to my inflammation vs an actual mesalamine side effect
I started taking mesalamine in December of '23, unfortunately in suppository form, but other than the initial discomfort, it has been smooth sailing. I'm lucky enough to have this medicine stop all symptoms I've had and it's been great. A small price to pay to not bleed rectally. I hope all is well for you too!
Not to scare you because there are clearly a lot of success stories here, but I took it for three weeks, and wound up in the ICU on a ventilator for 14 days with pericarditis and pneumonitis/acute respiratory distress syndrome (among other things). I didn’t parse my battery of early symptoms as side effects of the medication because they could be explained away as my colitis not getting better as expected and seasonal bronchitis. It wasn’t until I was at death’s door and after they’d tested me for literally everything (and everything came back negative) that the infectious disease specialist on my case tried jacking me full of steroids, which reversed the reaction and saved my life. This all happened 15 years ago last month. I made a full recovery and my colitis is in remission without meds now, but there’s a good chance mine was connected to celiac disease. I also don’t take any NSAIDs anymore even though I’ve never had that strong a reaction to any of the OTC meds.
When I had recovered somewhat (I was in skilled care for about 3 weeks afterward, relearning how to walk and be a functional human again), I googled the potential adverse effects/signs of a reaction, and I had had all of them. This was the first and last time I trusted a doctor blindly, because I had been miserable with the colitis and willing to try anything to feel better. I really learned a hard lesson. The kicker was, I showed them to the GI doctor that initially prescribed it (who’d refused to acknowledge that the mesalamine could’ve cause all of this) while I was in skilled care and the only thing he had to say was “you never mentioned that you had a headache.” I fired him from my case after that. Tried to sue for malpractice based on how he bungled my entire case, but the attorney I consulted with basically told me that since I survived, it wouldn’t be worth the trouble.
Anyway, like others have said, familiarize yourself with the rare adverse reactions and be alert to any weird changes in your health, and don’t be afraid to advocate for yourself if things don’t seem right.
I am so sorry you went through that amd am glad you are recovered and in remission.. I don't trust doctors much it's a long story. So I understand. My situation wasn't as bad as yours but kicked off my medicine fear. I will definitely be familiarizing myself with the adverse effects and watching myself. Thank you for the honest answer.
I too had a bad reaction to mesalamine pills, my first treatment. I got worse every day, and was too dumb to read the tiny brochure. After 3 weeks I was dreadfully ill and finally read the brochure, and then Googled it. I contacted my GI people, but was pointed toward my primary care physician who phoned me a day later. We talked. Next day she called again & said to immediately stop the Lialda (mesalamine) forever, and to pick up a prescription for Budesonide. Gradually I got better, but was subjected to a bunch of tests: blood, CAT scan, X-rays ultrasounds, repeatedly.
I'm now listed as allergic to mesalamine. It also may have been "mesalamine intolerance".
Mesalaminer for almost 30 years. Never a problem with the oral ones, and when my UC was mild it was enough to keep it mostly in remission. Now that I'm on biologics, the dr says to keep taking it as it's proven to help guard against colon cancer in UC patients.
I think it can cause some people looser stools, but you'll probably notice; let your doctor know if that happens. I've had those problems with the suppositories and enemas, but I never had a problem with the oral ones.
I took mesalamine for 6 months. It immediately helped a very great deal then quit working. The negative side effect was it gradually raised my uric acid levels and gave me gout. Because I didn’t drink enough water.
I started taking it when I was 10 and I’m 18 now it’s been really easy on my body and from what I know from my experience and others is that the side affects are not bad and almost non existent.
When I very first started taking them I had a couple of dizzy spells and the kind of headache where it feels like a tight band wraps around the top of my head. Also had joint pain but may simply be UC itself but I haven’t had that much since. It didn’t last long but was noticeable. Since then I’ve had zero side effects and just take them as routine everyday :)
Yes very much so. I’d never had them before so it worried me but did go away obviously you know what to look for with pots and pppd but it may very much happen so don’t overthink it simply keep track of it and check in with your doctor if it doesn’t go away x
I just started it about a week ago and so far no side effects! I have a huge problem swallowing “big” pills (aka anything bigger than like… a Benadryl haha) but I am able to get these down just fine. Also mine can be taken with or without food (there are versions of mesalamine that are one or the other I read, so just be sure to check) and I was worried empty stomach would make me nauseated but nope! I tolerate it just fine either way!
I've been taking it since 2008, including the last 4+ years that I've also been on a biologic.
I have tried, and do not recommend, mesalamine enemas for Reasons, but the oral mesalamine seems gentle and, while ymmv, relatively free of side effects.
I'm happy that I was able to use such an easy first line medication for so long! When I was diagnosed and started taking it in 1998, biologics were still pretty new, there weren't as many and from what I remember with my dad (he was on a biologic for degenerative rheumatoid arthritis for a few years before he died) you had to be in really bad shape for it to be a consideration.
There’s one I used to take where the capsule didn’t dissolve - I could swear it’s this. First few times I pooped i was like what the hell is happening? Took me a minute to figure it out..
I’ve been taking the suppositories for a year, 4 big pills a day and daily enemas for the last 3 months. No side effects really. Maybe mild headaches sometimes? But that could just be not drinking enough water or the 3 Petri dish children I have that get me sick constantly. I was really worried about it at first (I was pregnant when I started and I’m breastfeeding now) but everything seems to be totally fine! I can’t seem to go down to a maintenance dose though. I’m stuck at a high dose.
I drink a full glass of water with them (mason jar size) I was doing less at first but noticed casings sometimes coming out the other end. Now I do two big gulps with each pill and then chug the rest of the water. After breakfast every day so with lots of food and I won’t forget. I put water in my mouth first, then tilt back and drop a pill in and swallow. It helps me to get then down. Good luck!
Also, as another poster said, I get the brownish splash discoloration on the bottom of my toilet seat. I had no idea it was related until I just read someone else here has that! My urine itself appears normal.
I was allergic to it. It was the first medicine I took and I went from just rectal bleeding to actual ulcers and an inability to keep anything down. They took me off it and put me on steroids and I had lost 25ibs at that point. I was 150 for reference. I ended up having my first flare and all I was getting better I was still bleeding out. Let me tell you, Guam is the last place you want these things. The doc flies from Hawaii for a few days, knocks out a few scopes and diagnosed and went their merry way. I ended up having a stroke while in patient from my first flare and that's a whole separate issue.
That was my experience of course but it was like my colon was definitely out to get me, almost taking me out the Elvis way and all.
I had some dizziness and headaches when I first started but those have stopped. I have noticed I pass more bowel movements (and looser ones) than when I first started the mesalamine pills. I find I do have more bloating and heartburn on the pills too. The suppositories were better for me actually. Zero side effects at all. Try telling me GI that though 🫠 I hope you do well and don’t experience any side effects.
Thank you. The dizziness when I saw it on the side effects list scared me.. I have PPPD which is a dizziness condition (vestibular disorder) so I'm dizzy a lot.
I started taking it a few weeks ago, I had upset stomach, like a burning indigestion.. take it with food and drink plenty of water… my UC symptoms are improving greatly!
Personally Mesalamine did nothing for me. It never stopped my symptoms. However it made me really sick if I was outside or in the sun for even 30 mins sometimes I had to be out there for 1+ hours but either way it was awful. It also make me feel like I had a sunburn afterwards though there was no visible redness anywhere. Not saying that will happen to you but just my experience. I'm currently in a 2 year long flare up as well.
Mesalamine makes my colon feel uncomfortable and I get looser stools from it. My doctors ignored me when I told them it made me feel worse. I feel better without it.
My crp rose from normal to 35 and it took a toll on my kidneys. Have to get blood taken every month for control. But honestly that's still better than the other medication that comes after that
Mesalasine is very safe. It reduces the chance of colon cancer in ibd cases. There are pills, enemas, and suppositories. Which one to take will depend on your severity and the location of the inflammation.
The size of the pill is smaller than certain antibiotics and due to the coating, it would not start melting and stick to your tongue so it is easy to swallow.
Mine is $400 for a 3 month supply. I take 4 horse pill size ones each morning. I was on the capsule version, but it didn't help. I was doing 3 of them 3 times a day.
My side effects are that fly bites don't itch for very long any more and I am no longer allergic to hazel nuts and apples.
It could be a cooncidence. But a pleasant one.
> I have a hatred of taking new meds
Well, at least you're about to find out if immersion therapy works on you.
I had zero side effects from Mesalamine, fwiw.
I was so scared too, but no side effects except I noticed I have a little bit more acne, was thinking by age 27 I’d be done with acne but hey it could be worse 🤣 good luck
I have been taking them for almost a year now. No issues. I have forgotten to take them before, and I'll get a pretty bad headache for most of the morning. But that's about it. I am also slightly more sensitive to the sun, but if I put on sunscreen I don't have to think about it.
Do the research. I know there is a stigma against people that do research into things they are curious about knowing, but disregard all that. I'm looking at an article from medical news today and they say you might want to avoid common NSAID's due to the possibility of a negative reaction. But of course this is only one article and more research and monitoring how you feel are recommended. Good luck.
was diagnosed a year ago they started me on mesalamine, it didnt have any effects, side or not, at all. because it didnt work they moved me to different drugs but i was on it for about 6 months
Mesalamine has been a gamechanger for me. It gave me back my life! Started taking it 8 years ago, zero side effects. Only downside for me is that it does take several hours to work, so I typically take it at bedtime & midday.
Mesalamine is the easiest UC treatment on your body. It’s essentially an NSAID that has a special coating so it doesn’t dissolve until it hits your large intestine. For most people it has no more side effects than just taking ibuprofen. I have been taking it since I was diagnosed in 2021 and haven’t had a single issue since. I think you will do just fine my friend! Keep your chin up 💜
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Oh jeez.. I am so sorry it’s so expensive for you. 😕
When I was on it, it was $450 for a month supply.
You should get the goodrx app. (If you’re not in the US idk if it’ll apply). Personally, Medicaid for whatever reason decided to not renew my insurance this year (I’m unemployed and disabled, not fun). It’s been a huge help to me. Goodrx has some pretty damn reasonable coupon options for most meds/pharmacies tho and it helps a LOT Once you enter the type, dose, & quantity of your prescription you’ll get a list of different pharmacy’s prices (using the app) going from cheapest to most expensive. Have your prescription sent to the cheapest/most convenient pharmacy If you have more prescriptions it’s definitely worth checking those out too, I have no clue how I’d afford my adderall (even generic!) without it. Sometimes still expensive but I’ve never spent more than $75 for one prescription
One note on using GoodRX, if you use GoodRx for any prescription, the money going towards that prescription does not go into your deductible pool for your health insurance. Figured this out a few years ago and it burned me later in the year
This country has such a colossally stupid healthcare system.
I would also check out Mark Cuban’s online pharmacy, cost plus drugs. Drugs there are typically very reasonably priced. It looks like it’s $14 for 30 Mesalamine capsules.
So does mesalamine cause heartburn?
It really game me terrible heartburn for a while but it’s better now. I cut my dose from 4 daily to 2 daily and using the suppository at night. My symptoms were out of control now back at 4 with the suppository and my stomach feels fine. I have a very sensitive stomach so it could be that. I just started on a biologic and will stop taking it in the future
I think it depends on the person. I’ve been taking it for over a decade. I think in the beginning I might’ve had headaches but I don’t get heartburn from Pentasa. I get it from certain foods like spicy stuff and whatnot but that’s a given.
yk i’ve noticed that here and there but its been better
2012 switched from Asacol to Lialda --It works.
I've been taking it for 12 years. No side effects to speak of for me!
Mesalamine rarely has noticeable side effects. It happens, but it's rare. I've been taking it for 12 years with no side effects that I've noticed.
Thanks. That's comforting.
Same I’m on 13 years now I think. No side effects.
Been taking it for 5+ years and it's kept me in remission with no side effects. Just be thankful a medication like that exists for UC.
Thank you. Glad your doing good.
The only side effect is a weird one - it oxidizes when you pee and can turn toilet seats a weird brown purple color.
MYSTERY SOLVED!! Omg I was wondering what was happening with the bottom of my toilet seat 🤣
YUP. I had to scowl the internet to find out it was normal. This was about 5 years ago, but luckily I’ve stopped lialda now and am solely on entyvio because my toilet seats were a MESS. We replaced with plastic instead of wood to help.
Oh boy. Ok. Thank you for pointing that out. This should be intresting..
Interestingly enough, I discovered that the oxidization is worse with Lialda than it is with generic mesalamine. Had to make the switch to generic three months ago and don't have to wipe down the toilet seat daily anymore.
OMG that’s so good to know. I was on lialda because tricare only covers the brand name (seems silly but whatever). I’m just on entyvio now so no more issues for me either!
Mesalazine literally only makes me thirsty, thats it
How did you get used to taking such big pills?!?!
Just take a big gulp of water with them
Can you ask for granules instead of a pill? I got them when I told I've had problems swallowing big pills.
Oh they make them?? I'll call the doc tomorrow.
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Ook thanks. I'll ask mine. I know the bottle says do not crush or chew swallow whole.. so I wasn't sure
You're not supposed to crush them because they are slow release, and by doing that your body will start to absorb it sooner than it should, before it gets to your colon where it's needed. But definitely ask your doctor over a stranger on the Internet like me. Some people find it easier to take a sip of water first, then put the pill in your mouth and swallow. Some people end up using suppositories or enemas, which once again gets the medicine to the part of the body that needs it first. I do believe that with practice you can get used to the pills, but I also understand that people might have all kinds of sensitivities or issues that make it far harder for them than it is for me
Thank you
Honestly op i have an issue swallowing big pills aswell and thought i would struggle with my mesalamine. But the pills are like hydrocoated or something so they just glide down super smoothly. They arent like capsules or the powdery tablets that get stuck.
Oh thatz good to hear!
My GI told me to practice with Mike and Ikes. They’re about the same size. As a kid I couldn’t swallow pills so I was just told to open the capsules and mix the contents with applesauce. I did it for a few years until I was in middle school and could not stand to eat applesauce anymore. You basically just gotta train yourself to know the exact position to place the pill on your tongue that won’t make you gag. Also make sure to swallow it with enough water. Some people that have trouble swallowing pills say taking them with juice helps.
Thank you!
Have been using since 2009. No side effects. Kept me in remission for a long time. Really really worth it!!
Thank you. Yeah I dont want the UC to get worse.
Totally get it. I think mesalamine will help tbh. It has for a lot of us. I even use mesalamine suppositories when I’m flaring. It helps as well. Best of luck. Keep us updated 🙏🙏❤️
Thank you. I hope you continue doing well.
Hi. Are you on your mesalazine long term? I’m new to Octasa, I did a month and now on 3 months then repeat prescription if needed. And I’m going through a flare up so have started suppositories along side Octasa. I keep reading different views of people coming off meds or saying you have to stay on long term.
Yes I’m on it long term. Nice. I’m on Apriso generic which is 4x a day mesalamine. I’ve been on it since 2010, it was asacol back then and 12 pills a day when I was diagnosed with proctitis and then left sided pan colitis. It’s definitely the lowest level maintenance med. I’m hoping I can stay on it with going to other ones. Crossed fingers!
No side effects for me either. Some people have mesalamine intolerance which is like a worsening flare - it would start almost immediately after starting the drug.
Thank you. Ill out for that
This happened to me. It got so bad I was vomiting and my docs decided to switch me to a biologic instead. So it’s rare but it does happen. If you start a new med and it makes you feel worse, don’t be afraid to advocate for yourself and tell the doctor it’s not working.
I can’t take it either and went on Remicade.
Happened to me too
Thanks. I'm trying to do better with advocating for myself.
Given a choice I would avoid all medications but it’s abundantly clear that without them my body won’t function well in the environment in which I live. I blame polluted air, food and water (PFAS and microplastics everywhere, including in virtually every person’s blood stream), all of which have been found to be associated with UC. Every time we eat, drink and breathe we are ingesting something like medication except it hasn’t been found to be safe and effective like mesalamine. Just the opposite.
Thank you for this.
I’ve been on since 2017 or 2018 (I forget which at this point). No side effects here if that’s comforting. It’s the one constant in changing meds for me. Also just wanted to validate though that changing meds can be scary and unknown. This whole community gets that. Sending well wishes your way, friend!
Thank you so much.
Been taking it since December last year. No side effects. It’s an amazing drug, but bear in mind its effects are very slow, I found my symptoms slowly improved over a period of 6 months. So give it time and keep faith!
Thank you so much.
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My GI halved my dose 3 months ago, symptoms such as pain and gas returned but no blood, so it’s only just keeping the disease at bay, but I’m happy.
The only side effect I’ve noticed is that my urine reacts with bleach and leaves a reddy purple colour in the toilet lol. There was a previous post about it and doctors letter verifying it.
Lol oh wow. Thank you!
Most people have zero problems with Mesalamine. However, do be aware that however rare, some have a serious reaction. Read the brochure that comes with the pills. If you have odd symptoms arising, contact your doctor immediately.
I will be doing that thank you.
It can cause diarrhea, which is pretty ironic. My symptoms were decreased by like 95% after I went from mesalamine + stelara to just stelara.
Ty. I hope you are still doing good.
Been taking it for 5 years at a treatment dose (not maintenance) and the only thing I notice is a little nausea if I have it on an empty stomach
Thank you.
Single best drug for UC. I take 4 coated pills a day
Thats what they prescribed me. 4 pills.
I was initially prescribed mesalamine suppositories. Became fed up with that routine and was switched to oral a month or so ago. I, too, am terrified of side effects. I had mild headaches for a few days, but since then no side effects.
Oh thank you. Ill take mild headaches. I get bad ones as it is some days
Been taking it for 8 years. No real side effects for me- hair loss starting to see it a little, however prob more related to my inflammation vs an actual mesalamine side effect
Oh no. I've been losing my hair for 2 years now before diagnosis..
I started taking mesalamine in December of '23, unfortunately in suppository form, but other than the initial discomfort, it has been smooth sailing. I'm lucky enough to have this medicine stop all symptoms I've had and it's been great. A small price to pay to not bleed rectally. I hope all is well for you too!
Thank you. Mine would be the pills.
Even better! I hope it works out well for you. From what I've read, mesalamine is pretty much the least problematic meds to be on.
That's good news!
Which form of mesalamine are you taking? I have had very little to no side effects on suppositories.
It's the big pills.
Not to scare you because there are clearly a lot of success stories here, but I took it for three weeks, and wound up in the ICU on a ventilator for 14 days with pericarditis and pneumonitis/acute respiratory distress syndrome (among other things). I didn’t parse my battery of early symptoms as side effects of the medication because they could be explained away as my colitis not getting better as expected and seasonal bronchitis. It wasn’t until I was at death’s door and after they’d tested me for literally everything (and everything came back negative) that the infectious disease specialist on my case tried jacking me full of steroids, which reversed the reaction and saved my life. This all happened 15 years ago last month. I made a full recovery and my colitis is in remission without meds now, but there’s a good chance mine was connected to celiac disease. I also don’t take any NSAIDs anymore even though I’ve never had that strong a reaction to any of the OTC meds. When I had recovered somewhat (I was in skilled care for about 3 weeks afterward, relearning how to walk and be a functional human again), I googled the potential adverse effects/signs of a reaction, and I had had all of them. This was the first and last time I trusted a doctor blindly, because I had been miserable with the colitis and willing to try anything to feel better. I really learned a hard lesson. The kicker was, I showed them to the GI doctor that initially prescribed it (who’d refused to acknowledge that the mesalamine could’ve cause all of this) while I was in skilled care and the only thing he had to say was “you never mentioned that you had a headache.” I fired him from my case after that. Tried to sue for malpractice based on how he bungled my entire case, but the attorney I consulted with basically told me that since I survived, it wouldn’t be worth the trouble. Anyway, like others have said, familiarize yourself with the rare adverse reactions and be alert to any weird changes in your health, and don’t be afraid to advocate for yourself if things don’t seem right.
I am so sorry you went through that amd am glad you are recovered and in remission.. I don't trust doctors much it's a long story. So I understand. My situation wasn't as bad as yours but kicked off my medicine fear. I will definitely be familiarizing myself with the adverse effects and watching myself. Thank you for the honest answer.
I too had a bad reaction to mesalamine pills, my first treatment. I got worse every day, and was too dumb to read the tiny brochure. After 3 weeks I was dreadfully ill and finally read the brochure, and then Googled it. I contacted my GI people, but was pointed toward my primary care physician who phoned me a day later. We talked. Next day she called again & said to immediately stop the Lialda (mesalamine) forever, and to pick up a prescription for Budesonide. Gradually I got better, but was subjected to a bunch of tests: blood, CAT scan, X-rays ultrasounds, repeatedly. I'm now listed as allergic to mesalamine. It also may have been "mesalamine intolerance".
Mesalaminer for almost 30 years. Never a problem with the oral ones, and when my UC was mild it was enough to keep it mostly in remission. Now that I'm on biologics, the dr says to keep taking it as it's proven to help guard against colon cancer in UC patients. I think it can cause some people looser stools, but you'll probably notice; let your doctor know if that happens. I've had those problems with the suppositories and enemas, but I never had a problem with the oral ones.
Thank you, I hope your doing well.
I took mesalamine for 6 months. It immediately helped a very great deal then quit working. The negative side effect was it gradually raised my uric acid levels and gave me gout. Because I didn’t drink enough water.
Ook thank you. Ill keep an eye out for that
I started taking it when I was 10 and I’m 18 now it’s been really easy on my body and from what I know from my experience and others is that the side affects are not bad and almost non existent.
Thank you.
Hey! Started it for little over 5 weeks and no side effects for now. I take 4g every morning. Glad it’s working.
I'm glad it's working for u too!
I didn't feel any side effects but my liver enzymes skyrocketed after one week of taking it. So I'm not on it anymore.
Oh no, my doc didn't mention anything about blood work
We monitored them because I had a PSC diagnosed before my UC. Just be aware and ask for checkups.
I will thank you. I have pots and vestibular disorder, along with uc now. So blood work with the pots has been ongoing.
I wanna be back on it sooooo bad!! Idk why as soon as I stopped, FLARE
Oh no im sorry
I guess it’s just the way the cookie crumbles
Still sucks.
When I very first started taking them I had a couple of dizzy spells and the kind of headache where it feels like a tight band wraps around the top of my head. Also had joint pain but may simply be UC itself but I haven’t had that much since. It didn’t last long but was noticeable. Since then I’ve had zero side effects and just take them as routine everyday :)
Thanks. I have pots and pppd(dizzy condition) and sounds like a tension headache. I'm glad it didn't last long.
Yes very much so. I’d never had them before so it worried me but did go away obviously you know what to look for with pots and pppd but it may very much happen so don’t overthink it simply keep track of it and check in with your doctor if it doesn’t go away x
I’ve been taking it for years and have no side effects. The only UC med that’s causes me side effects is Prednisone
I hate steriods..
I just started it about a week ago and so far no side effects! I have a huge problem swallowing “big” pills (aka anything bigger than like… a Benadryl haha) but I am able to get these down just fine. Also mine can be taken with or without food (there are versions of mesalamine that are one or the other I read, so just be sure to check) and I was worried empty stomach would make me nauseated but nope! I tolerate it just fine either way!
Lol yeah that sounds like me. Mine also says with ir without food. Thank you. I guess tomorrow I will be taking the plunge.
I call them my microchips because my friend said they look like they should go in a computer drive 😂
Haha that's great!
No side effects here, just don't be surprised when you see them in the toilet from time to time
Ahh ok. Thanks
I've been taking it since 2008, including the last 4+ years that I've also been on a biologic. I have tried, and do not recommend, mesalamine enemas for Reasons, but the oral mesalamine seems gentle and, while ymmv, relatively free of side effects.
They prescribed the enemas as well but pharmacy said they are unavailable. Amd I'm not comfortable with enemas or suppositories.
I never had a single side effect from mesalamine and it worked great for a couple of decades, until it stopped working. It's expensive though.
I'm sorry to hear that.
I'm happy that I was able to use such an easy first line medication for so long! When I was diagnosed and started taking it in 1998, biologics were still pretty new, there weren't as many and from what I remember with my dad (he was on a biologic for degenerative rheumatoid arthritis for a few years before he died) you had to be in really bad shape for it to be a consideration.
There’s one I used to take where the capsule didn’t dissolve - I could swear it’s this. First few times I pooped i was like what the hell is happening? Took me a minute to figure it out..
The ones they gave me are huge but doesn't look like a capsule.
I’ve been taking the suppositories for a year, 4 big pills a day and daily enemas for the last 3 months. No side effects really. Maybe mild headaches sometimes? But that could just be not drinking enough water or the 3 Petri dish children I have that get me sick constantly. I was really worried about it at first (I was pregnant when I started and I’m breastfeeding now) but everything seems to be totally fine! I can’t seem to go down to a maintenance dose though. I’m stuck at a high dose.
I think that's what I'm on. It's 4 pills a day. I'm sorry your stuck amd no maintenance dose. How do you get past how big the pills are.
I drink a full glass of water with them (mason jar size) I was doing less at first but noticed casings sometimes coming out the other end. Now I do two big gulps with each pill and then chug the rest of the water. After breakfast every day so with lots of food and I won’t forget. I put water in my mouth first, then tilt back and drop a pill in and swallow. It helps me to get then down. Good luck!
Oh wow. Thank you. I will definitely try it.
Also, as another poster said, I get the brownish splash discoloration on the bottom of my toilet seat. I had no idea it was related until I just read someone else here has that! My urine itself appears normal.
Thats really intresting.
I was allergic to it. It was the first medicine I took and I went from just rectal bleeding to actual ulcers and an inability to keep anything down. They took me off it and put me on steroids and I had lost 25ibs at that point. I was 150 for reference. I ended up having my first flare and all I was getting better I was still bleeding out. Let me tell you, Guam is the last place you want these things. The doc flies from Hawaii for a few days, knocks out a few scopes and diagnosed and went their merry way. I ended up having a stroke while in patient from my first flare and that's a whole separate issue. That was my experience of course but it was like my colon was definitely out to get me, almost taking me out the Elvis way and all.
I had some dizziness and headaches when I first started but those have stopped. I have noticed I pass more bowel movements (and looser ones) than when I first started the mesalamine pills. I find I do have more bloating and heartburn on the pills too. The suppositories were better for me actually. Zero side effects at all. Try telling me GI that though 🫠 I hope you do well and don’t experience any side effects.
Thank you. The dizziness when I saw it on the side effects list scared me.. I have PPPD which is a dizziness condition (vestibular disorder) so I'm dizzy a lot.
I started taking it a few weeks ago, I had upset stomach, like a burning indigestion.. take it with food and drink plenty of water… my UC symptoms are improving greatly!
I'm sorry to hear that but glad UC symptoms are improving.
Personally Mesalamine did nothing for me. It never stopped my symptoms. However it made me really sick if I was outside or in the sun for even 30 mins sometimes I had to be out there for 1+ hours but either way it was awful. It also make me feel like I had a sunburn afterwards though there was no visible redness anywhere. Not saying that will happen to you but just my experience. I'm currently in a 2 year long flare up as well.
It even says on the box to avoid sunlight and artificial sunlight which sucks and is impossible for me cause I live in Florida. 😬
Mesalamine makes my colon feel uncomfortable and I get looser stools from it. My doctors ignored me when I told them it made me feel worse. I feel better without it.
I've also heard of people having pancreas and liver issues from long-term use. And that frightens me.
My crp rose from normal to 35 and it took a toll on my kidneys. Have to get blood taken every month for control. But honestly that's still better than the other medication that comes after that
Makes my farts smell like dog food lmao
After 10years of taking it the generics started giving me spots on my skin that looked like ring worm.
For most it’s fine, but for me it only made things worse. Did not help the uc and made me go 10 times a day with diarrhea all the time
I think majority of people are fine on it. I had issues but it’s been spotted and I can’t take it now. They do regular blood checks when on it too.
Mesalasine is very safe. It reduces the chance of colon cancer in ibd cases. There are pills, enemas, and suppositories. Which one to take will depend on your severity and the location of the inflammation. The size of the pill is smaller than certain antibiotics and due to the coating, it would not start melting and stick to your tongue so it is easy to swallow.
Mine is $400 for a 3 month supply. I take 4 horse pill size ones each morning. I was on the capsule version, but it didn't help. I was doing 3 of them 3 times a day.
I don’t really get symptoms, been taking it since 2012.
This is the bees knees of treatment. I hated taking the pills Apriso was 4 a day but i would give anything to take it over infusions.
Look into copay programs for all your UC medications
My side effects are that fly bites don't itch for very long any more and I am no longer allergic to hazel nuts and apples. It could be a cooncidence. But a pleasant one.
That sounds nice
Ha, nice but I'd gladly give up apples and nuts to be normal!
I understand that
It works, but def gives me headaches.
That sucks :-(
It’s a crappy trade off.
> I have a hatred of taking new meds Well, at least you're about to find out if immersion therapy works on you. I had zero side effects from Mesalamine, fwiw.
I was so scared too, but no side effects except I noticed I have a little bit more acne, was thinking by age 27 I’d be done with acne but hey it could be worse 🤣 good luck
I had no side effects, been on it for 4 years. It’s a very simple UC med, basically first line of defense. You’ll be ok
I can't speak for everyone obviously, but I've not had any symptoms from it. Or if I did it isn't noticeable.
I have been taking them for almost a year now. No issues. I have forgotten to take them before, and I'll get a pretty bad headache for most of the morning. But that's about it. I am also slightly more sensitive to the sun, but if I put on sunscreen I don't have to think about it.
Headaches are no fun. I get them often.
Do the research. I know there is a stigma against people that do research into things they are curious about knowing, but disregard all that. I'm looking at an article from medical news today and they say you might want to avoid common NSAID's due to the possibility of a negative reaction. But of course this is only one article and more research and monitoring how you feel are recommended. Good luck.
was diagnosed a year ago they started me on mesalamine, it didnt have any effects, side or not, at all. because it didnt work they moved me to different drugs but i was on it for about 6 months
Im.sorry it didnt work.
I've took it since October last year. Kept me into remission so far. No side effects.
I pee a lot after taking, like a horse
I pee a lot now lol.
I took it for almost 2 years and I don't remember any side effects. I haven't taken it since October last year though.
Oh ok. Thank you. Are you in remission?
Yeah! No flare up since then. It's amazing. Let's see if I make it a full year!
Nice. I hope you can!
Mesalamine has been a gamechanger for me. It gave me back my life! Started taking it 8 years ago, zero side effects. Only downside for me is that it does take several hours to work, so I typically take it at bedtime & midday.
I'm glad to hear that. Thank you.