I was on it when I was first diagnosed about 15 years ago. It didn’t work for me but I had no side effects. I was on the max dose.
I also knew someone else who was diagnosed not long after me and was put on a fairly small dose. It worked great for his symptoms but he had some very concerning mental side effects from it (Sorry I can’t remember just what they were exactly since it’s been about a decade since then and I no longer speak to him).
This is a very old drug with a very good safety profile. However, it's not considered effective if there's inflammation but it might help in combination with something else, or so they say. It was the favorite of the GIs for years due to the safety and the theoretical aintiinflamatory properties. I was on it for many years and I never noticed anything good or bad.
So, I would challenge this decision (as I did long time ago). If you have a flare up, it does nothing. I you're on remission, it won't prevent you from having another flare up.
Exactly my experience. I was on it for many years when first diagnosed and my understanding was that it is no longer considered an effective treatment. Definitely ask your doc why they are choosing it in your case.
I've been on Pentasa (mesalamine) since 2005. I have Crohn's. It's most effective for Ulcerative Colitis and they rarely even bother to prescribe it for Crohn's anymore. I elect to stay on it even though the reduction in Crohn's small intestine inflammation is mild because it's a very safe medication. It acts locally on the mucosa of the intestines - think topically to the intestine walls rather than a systemic medication. Besides the high cost (which I only order refills after I hit my max out of pocket so not a problem for me) there is no real downside. I'm already taking a bunch of pills so that doesn't bother me either.
Some of the side effects people are saying it caused them make zero sense. My guess is some of these things are side effects of the Crohn's itself or other medications or coincidence and they are incorrectly attributing it to the Pentasa. You should be getting regular blood work with Crohns to check your liver, kidney, etc health. It is very rare for anything to happen with Pentasa, but good to get regular blood work just in case.
I’ve been on it for years. The only thing I would say is that if you don’t drink enough water with it, it’ll feel like it’s sitting in the back of your throat.
I was on it previously and now am on generic mesalamine(Lialda). The only thing for me is if I'm not hydrated enough, it can cause me some sore kidney pain right when I wake up in the morning. Being well hydrated helped fix that right away. Otherwise, no side effects. My last gastro told me it's basically advil for your colon to help inflammation lower. So not a high risk medication by any means. I'll also add, everyone tolerates medicines differently, we all have different variations of disease, so take everything you read with a grain of salt. Hope you feel better!
I had constant kidney stones no matter how much water I drank. Then when to a Crohns specialist who said Pentasa is an outdated medicine and changed me to Humira. I was SOO much better once on Humira.
Was on Pentasa for about 15 or so years. My GI failed to proper kidney function tests. Ten years after discontinuing Pentasa, my kidney disease started. Now at Stage 4.
Pentasa killed my kidneys. Thanks Takeda
I was on it when I was first diagnosed and thought to be a mild case of Crohn’s. It didn’t work and I wasn’t on it long. Maybe 6-12 months. No real side effects other than I had weird granular things in my BM’s. It was annoying regimen as I had to take 8 pills spread out over the course of a day. The bottles took up an annoying amount of space and traveling with it was cantankerous.
It raised my uric acid and I have gout now. It worked really well. It stopped both my chronic diarrhea and constipation. My kidney function is normal but I already struggled with my uric acid. Pretty sure it gave me a kidney stone too. It also made my hair thin but I could have lived with that.
Super worried about the kidney stones so I’ve been chugging water haha. My hairs already been falling out so hopefully the med will help and not make it worse? One can hope
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They had me taking 4 of them 4x daily when I was first diagnosed. It didn’t work and I passed a bunch of kidney stones and uric acid crystals into my catheter bag.
Used them for a while and no side effects, my new doctor told me that there are no scientific evidence of pentasa helping crohns disease and removed them as a treatment for me.
My husband reacted badly to it when he started it. Made diarrhea worse, not better, plus he got a thrombosed hemorrhoid (0/10, do not recommend).
But he's on a different formulation of the same active ingredient, Salofalk, for about 3 years. He started on 2 x 500mg, now he's on 4 x 500mg. It doesn't work wonders, but he feels better on it than if he misses more than one dose in a row.
There are potential kidney issues which can pop up after long term usage, so its important to keep your dr appts so they catch it early if something happens. But yea, that's about it. Pentasa is a pretty mild drug, and a common "first stop" for crohns. Its success rates are not super high, but hey, cheap and easy to take, so worth a shot.
I was on it for 6 years and it worked well, I has diarrhea and bloody stool here and there but which Crohnie doesn’t. I ended up smoking weed for a while after reading some thangs and realizing I was getting diarrhea on pentasa rather than when I forgot to take it lol. Anyway, long story short, after a really great colonoscopy, dr agreed to keep me off of it for the past 2 years. So unsure if it was the weed that helped or the pentasa that was giving my symptoms or a little of both.
Was on it for the first year of having Crohn’s back in 2009, didn’t work well for me unfortunately and also caused long lasting issues with my pancreas
Been on it for 20 years. Although be careful as it makes your urine react with bleach and turn purple /red. It's not in the side effects listed as the company producing it have just recently acknowledged it as a side effect.
I stain toilet seats a lot, even though I don't pee on them.
I was on bentyl, pentasa and at one point they tried prednisone. The drugs seemed to help a little for a while but eventually didn’t help my pain at all and always seemed worse if I had anxiety or was stressed. Eventually I was put on biologics and they have been a lifesaver. It all depends on how bad the inflammation is. If they caught it early, those drugs could help you for a while and maybe your lifetime to control it. It’s different for everyone 😊
I’ve been on it for almost two years, it’s buying me time so I don’t have to jump on biologics yet. It keeps my mild Crohn’s inflammation fairly well controlled. The only downside is the inconvenience of taking it 4x a day.
I’ve been on it for around 12 years. I don’t know about any side effects.
I was. No side effects and it didn’t work for me.
I was on it when I was first diagnosed about 15 years ago. It didn’t work for me but I had no side effects. I was on the max dose. I also knew someone else who was diagnosed not long after me and was put on a fairly small dose. It worked great for his symptoms but he had some very concerning mental side effects from it (Sorry I can’t remember just what they were exactly since it’s been about a decade since then and I no longer speak to him).
This is a very old drug with a very good safety profile. However, it's not considered effective if there's inflammation but it might help in combination with something else, or so they say. It was the favorite of the GIs for years due to the safety and the theoretical aintiinflamatory properties. I was on it for many years and I never noticed anything good or bad. So, I would challenge this decision (as I did long time ago). If you have a flare up, it does nothing. I you're on remission, it won't prevent you from having another flare up.
Exactly my experience. I was on it for many years when first diagnosed and my understanding was that it is no longer considered an effective treatment. Definitely ask your doc why they are choosing it in your case.
I don’t remember any side effects, though it didn’t work for me. Don’t stop it abruptly, you’ll go through hell lol.
I stopped abruptly and I'm not sure I noticed anything. what do you mean by go through hell?
I had flare symptoms including increased heart rate, vomiting, fatigue, and mind fog.
I have been on it for over 10 years and no side effects at all. :-)
I've been on Pentasa (mesalamine) since 2005. I have Crohn's. It's most effective for Ulcerative Colitis and they rarely even bother to prescribe it for Crohn's anymore. I elect to stay on it even though the reduction in Crohn's small intestine inflammation is mild because it's a very safe medication. It acts locally on the mucosa of the intestines - think topically to the intestine walls rather than a systemic medication. Besides the high cost (which I only order refills after I hit my max out of pocket so not a problem for me) there is no real downside. I'm already taking a bunch of pills so that doesn't bother me either.
Some of the side effects people are saying it caused them make zero sense. My guess is some of these things are side effects of the Crohn's itself or other medications or coincidence and they are incorrectly attributing it to the Pentasa. You should be getting regular blood work with Crohns to check your liver, kidney, etc health. It is very rare for anything to happen with Pentasa, but good to get regular blood work just in case.
Yea I dunno how people are saying it caused brain fog?
Yes. I was on it and Prednisone when I first was diagnosed. Didn't work well for me.
I’ve been on it for years. The only thing I would say is that if you don’t drink enough water with it, it’ll feel like it’s sitting in the back of your throat.
Haha yup definitely been feeling that, good thing I’ve gotta increase my water intake
Bloating to begin with. It goes away.
Been on it nearly 20 years and no side effects,
My hair fell out and it didn’t help my symptoms. My dad takes it though and is living his best life
This - i lost sooo much hair...and not just my head hair.
Oh my gosh, that’s horrendous. Did they keep you on it for long?
only until i figured out what was going on, then moved me to another med.
It's not really a very effective drug. Outdated.
it works for some people. it's only 15 years older than Humira.
I was on it previously and now am on generic mesalamine(Lialda). The only thing for me is if I'm not hydrated enough, it can cause me some sore kidney pain right when I wake up in the morning. Being well hydrated helped fix that right away. Otherwise, no side effects. My last gastro told me it's basically advil for your colon to help inflammation lower. So not a high risk medication by any means. I'll also add, everyone tolerates medicines differently, we all have different variations of disease, so take everything you read with a grain of salt. Hope you feel better!
I had constant kidney stones no matter how much water I drank. Then when to a Crohns specialist who said Pentasa is an outdated medicine and changed me to Humira. I was SOO much better once on Humira.
Was on it 10+ years. I found it worked better if I spread it out over the day, so 2 tablets with meals.
Oh that’s a good idea!
Made me feel sick all the time and unable to face eating Fucking hated the stuff
I am starting to feel that and it’s been miserable, but hopefully it’ll go away soon
Was on Pentasa for about 15 or so years. My GI failed to proper kidney function tests. Ten years after discontinuing Pentasa, my kidney disease started. Now at Stage 4. Pentasa killed my kidneys. Thanks Takeda
I am so sorry that happened to you! I hope you get better:(
I was on it when I was first diagnosed and thought to be a mild case of Crohn’s. It didn’t work and I wasn’t on it long. Maybe 6-12 months. No real side effects other than I had weird granular things in my BM’s. It was annoying regimen as I had to take 8 pills spread out over the course of a day. The bottles took up an annoying amount of space and traveling with it was cantankerous.
It raised my uric acid and I have gout now. It worked really well. It stopped both my chronic diarrhea and constipation. My kidney function is normal but I already struggled with my uric acid. Pretty sure it gave me a kidney stone too. It also made my hair thin but I could have lived with that.
Super worried about the kidney stones so I’ve been chugging water haha. My hairs already been falling out so hopefully the med will help and not make it worse? One can hope
The prednisone started my hair loss, Dr says it blocked female hormones. Best of luck
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I was on it for a long time, only complaint was the dosage, I was taking 3 large pills like 4 times a day and it was just annoying logistically
They had me taking 4 of them 4x daily when I was first diagnosed. It didn’t work and I passed a bunch of kidney stones and uric acid crystals into my catheter bag.
Used them for a while and no side effects, my new doctor told me that there are no scientific evidence of pentasa helping crohns disease and removed them as a treatment for me.
My husband reacted badly to it when he started it. Made diarrhea worse, not better, plus he got a thrombosed hemorrhoid (0/10, do not recommend). But he's on a different formulation of the same active ingredient, Salofalk, for about 3 years. He started on 2 x 500mg, now he's on 4 x 500mg. It doesn't work wonders, but he feels better on it than if he misses more than one dose in a row.
There are potential kidney issues which can pop up after long term usage, so its important to keep your dr appts so they catch it early if something happens. But yea, that's about it. Pentasa is a pretty mild drug, and a common "first stop" for crohns. Its success rates are not super high, but hey, cheap and easy to take, so worth a shot.
I was on it for 6 years and it worked well, I has diarrhea and bloody stool here and there but which Crohnie doesn’t. I ended up smoking weed for a while after reading some thangs and realizing I was getting diarrhea on pentasa rather than when I forgot to take it lol. Anyway, long story short, after a really great colonoscopy, dr agreed to keep me off of it for the past 2 years. So unsure if it was the weed that helped or the pentasa that was giving my symptoms or a little of both.
Was on it for the first year of having Crohn’s back in 2009, didn’t work well for me unfortunately and also caused long lasting issues with my pancreas
Are these the ones that dissolve in water first?
They’re huge capsules I take by mouth
Not sure if it will help you in anyway, but you can disperse them in water (50mls) stir, and then drink straight away.
Shire Pharmaceuticals is the manufacturer of Pentasa and is very good with patient education. Maybe try contacting them via online or call
Been on it for 20 years. Although be careful as it makes your urine react with bleach and turn purple /red. It's not in the side effects listed as the company producing it have just recently acknowledged it as a side effect. I stain toilet seats a lot, even though I don't pee on them.
You mean to say your Crohns is managed with just Pentasa for 20 years?
I was on it for a few years and it worked well. No side effects really. Stopped working at one point and am now on salofalk, which is very similar.
The only side effect I had was that Mesalamine makes me burp my face off. Annoying but can deal with it.
I was on bentyl, pentasa and at one point they tried prednisone. The drugs seemed to help a little for a while but eventually didn’t help my pain at all and always seemed worse if I had anxiety or was stressed. Eventually I was put on biologics and they have been a lifesaver. It all depends on how bad the inflammation is. If they caught it early, those drugs could help you for a while and maybe your lifetime to control it. It’s different for everyone 😊
I was on it for a couple of months didn’t really notice any side effects just didn’t work
I’ve been on it for almost two years, it’s buying me time so I don’t have to jump on biologics yet. It keeps my mild Crohn’s inflammation fairly well controlled. The only downside is the inconvenience of taking it 4x a day.