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What medications do you take

Hey

I was curious what medication do you take for your Crohns and have taken?

What is your opinion on it?
Positive:
Negative (including side effects):

Thanks! I feel like there are medications out there that I do not know about and because of that, do not have all the knowledge to make the best choices for treatment for me!
Love to your Bellies
 
Hey, you can take a look at my signature below to see what I have taken and if you are unfamiliar with any I will give you my opinion... always remember tho, everyone is different depending on where the disease is located and all that jazz.

All the best!
 

KWalker

Moderator
My medications I've been on are also in my signature. As far as side effects I haven't had any serious side effects that we get warned about but with almost all of them I've gotten headaches, nausea, and with methotrexate I actually got bad mouth ulcers so I guess that was pretty serious. In all cases though the pros out weighed the cons
 
My meds are also in my signature. The main side effect I suffered was from the Prednisone. It broke down the calcium in my system and caused my teeth to go bad from the inside out. I had to get them pulled because of it. Make sure to take lots of calcium suppliments if you are taking Pred.
 

SarahBear

Moderator
Location
Charleston,
Also in my signature, but here's a bit on my experiences…

Prednisone: I had a very, very bad time with Pred. It did its job, but I had severe insomnia. I slept maybe two hours every two or three nights. They wouldn't give me anything to help me sleep because I was underage, so I just had to deal with it. Eventually, I started hallucinating from the lack of sleep and they tried to taper me off more quickly. It didn't work, as I couldn't even stand up after we cut down the dose, so I had to go back up and continue with a taper that was in between the original and the modified one. I also ate like crazy. Every morning, I had six eggs, four pieces of toast, and a half a pack of bacon. This is incredible, considering I ranged from 90 to 103 lbs while on Pred. I was physically exhausted all the time, but my mind was going crazy - I'd talk so fast I got out of breath and would have to lay down. However, an experience like this is not typical.

6-MP: I only took this for about a month, so I'm really no good with advice or information on it. I didn't feel any side effects, but then again, I was also on Prednisone at the time, so anything it could have done would probably have gone unnoticed. I'm thinking of asking to get back on this one.

Methotrexate: I had good luck with this. I switched from 6-MP to methotrexate because I couldn't swallow pills, so the injection worked better for me. I took it for maybe a year to two years… I can't remember well because the Prednisone has messed up my memory of that time period. It worked well for me - I definitely felt better while taking it.

Pentasa: Like 6-MP, I had trouble with this one. Pentasa comes in massive capsules, which I just couldn't get down with any level of success. I was prescribed 8 of them a day… I'd get maybe two down. The next day, I might get all eight, but the day after I wouldn't get any of them. If I can't take it regularly, there's really not much point, so I notified my GI's office and I'm waiting for my next appointment so I can see about getting something else.

Just keep in mind, that everyone reacts very differently to the different medications. Please don't make decisions based solely off of others' experiences, because yours will very likely be different. With that said, you might want to check out the Treatment section of the forum. There are subsections for the commonly used medications, and most of them have stickies giving you an overview of that medication.
 
I have taken for Crohns Entocort, Pentassa, Steroids, Methotrexate

Now for Crohns Remicade, Entocort and at times steroids.
You can see an entire list of what I'm on in my signature.
 

FullM3lt

Activate CB2
Location
Pacific NW
I've been on prednisone, asacol/lialda, remicade, flagyl, nexium, 6mp....and a bunch of other stuff I can't even remember. They all failed miserably. Prednisone gave me permanent joint/bone damage and remicade put me into anaphylactic shock. 6mp weakened my immune system so I'd catch a cold every 2 weeks. Flagyl gave me horrid stomach cramps and nausea. Asacol and lialda had no negative side effects but they didn't help.

My current meds are in my sig. They are mostly vitamins/supplements as well as MM. People will hate on MM without knowing the science behind it, but it's great for IBD. Diet and exercise are just as efficient as meds IMO....modern medicine kinda sucks when it comes to IBD, at least in my experience.
 
Prednisone.. It sure was an interesting ride. I was doing terrible with secondary symptoms to the point where pain and walking were hard, 5~6 hours after my first dose of pred (40mg)and they were all gone. It was a crazy miracle. I was crying.. I couldn't believe how fast the pain went away and how I could walk with no pain at all.

Now here I don't know what exactly it was? combination of everything?! I don't know.. But tapering off prednisone and starting 6mp at the same time (off one and onto the other at same time). physically this was all fine. Mentally, wow I had some crazy crazy thoughts running through my head to the point i was scaring myself (for 20mg -> 15 -> 10 -> 5mg part of the taper). These all went away with the pred being gone so I attribute it mostly to getting of the pred. But it was defiantly a noticeable affect. First time I have ever really had something that affected my thought patterns so drastically.

I am currently on Lialda and 6mp. I take the 6mp as soon as i wake up (8am). Then head into work and get a bagel and cup of coffee and take the Lialda(9am). Then feel light nausea that lasts tell 3~pm. (which is by far an easy trade off to how i felt during my flares)
 
Hey, you can take a look at my signature below to see what I have taken and if you are unfamiliar with any I will give you my opinion... always remember tho, everyone is different depending on where the disease is located and all that jazz.

All the best!
What is T3?
 
My medications I've been on are also in my signature. As far as side effects I haven't had any serious side effects that we get warned about but with almost all of them I've gotten headaches, nausea, and with methotrexate I actually got bad mouth ulcers so I guess that was pretty serious. In all cases though the pros out weighed the cons
THANK YOU for sharing :)
 
My meds are also in my signature. The main side effect I suffered was from the Prednisone. It broke down the calcium in my system and caused my teeth to go bad from the inside out. I had to get them pulled because of it. Make sure to take lots of calcium suppliments if you are taking Pred.
THAT IS VERY GOOD TO Know, i have been on it for a month now and it is killing me with sleep, i dont know what it is like to really sleep and i eat like a crazy woman! i am taking a multi-vitamin with Calcium, will ask my doc about taking more ...
 
Also in my signature, but here's a bit on my experiences…

Prednisone: I had a very, very bad time with Pred. It did its job, but I had severe insomnia. I slept maybe two hours every two or three nights. They wouldn't give me anything to help me sleep because I was underage, so I just had to deal with it. Eventually, I started hallucinating from the lack of sleep and they tried to taper me off more quickly. It didn't work, as I couldn't even stand up after we cut down the dose, so I had to go back up and continue with a taper that was in between the original and the modified one. I also ate like crazy. Every morning, I had six eggs, four pieces of toast, and a half a pack of bacon. This is incredible, considering I ranged from 90 to 103 lbs while on Pred. I was physically exhausted all the time, but my mind was going crazy - I'd talk so fast I got out of breath and would have to lay down. However, an experience like this is not typical.

6-MP: I only took this for about a month, so I'm really no good with advice or information on it. I didn't feel any side effects, but then again, I was also on Prednisone at the time, so anything it could have done would probably have gone unnoticed. I'm thinking of asking to get back on this one.

Methotrexate: I had good luck with this. I switched from 6-MP to methotrexate because I couldn't swallow pills, so the injection worked better for me. I took it for maybe a year to two years… I can't remember well because the Prednisone has messed up my memory of that time period. It worked well for me - I definitely felt better while taking it.

Pentasa: Like 6-MP, I had trouble with this one. Pentasa comes in massive capsules, which I just couldn't get down with any level of success. I was prescribed 8 of them a day… I'd get maybe two down. The next day, I might get all eight, but the day after I wouldn't get any of them. If I can't take it regularly, there's really not much point, so I notified my GI's office and I'm waiting for my next appointment so I can see about getting something else.

Just keep in mind, that everyone reacts very differently to the different medications. Please don't make decisions based solely off of others' experiences, because yours will very likely be different. With that said, you might want to check out the Treatment section of the forum. There are subsections for the commonly used medications, and most of them have stickies giving you an overview of that medication.
THANK YOU SARAH . I am just tryign to see also if i hear of medications I have never heard of to do my research.
And i CAN TOTALLY relate to you on prednisone! I am on it now. i do not know what it is like to sleep, i literally can not stop consuming food and like you said, my body is tired but my mind is not, it is such a false sense of energy!
i did 6mp, bad reactions for me, brought my white blood counts so low i needed a blood transfusion (but held off on it in hopes that if i got off it i would naturally rebuild my red and white at that point, and i did with some iron transfusion and being out of commission for a month) and i lose hair

thank you for sharing your experiences, so sweet to take your time and type it. there were a couple meds i am not familiar with and look forward to looking into them
 
I have taken for Crohns Entocort, Pentassa, Steroids, Methotrexate

Now for Crohns Remicade, Entocort and at times steroids.
You can see an entire list of what I'm on in my signature.
crazy to say but i feel like i am unfamiliar with about half of what you take. Curious to see what they are all for and when they are used! thank you for sharing with me
 
I've been on prednisone, asacol/lialda, remicade, flagyl, nexium, 6mp....and a bunch of other stuff I can't even remember. They all failed miserably. Prednisone gave me permanent joint/bone damage and remicade put me into anaphylactic shock. 6mp weakened my immune system so I'd catch a cold every 2 weeks. Flagyl gave me horrid stomach cramps and nausea. Asacol and lialda had no negative side effects but they didn't help.

My current meds are in my sig. They are mostly vitamins/supplements as well as MM. People will hate on MM without knowing the science behind it, but it's great for IBD. Diet and exercise are just as efficient as meds IMO....modern medicine kinda sucks when it comes to IBD, at least in my experience.
What is MM? and i agree about that 6mp, it killed me softly
 
Prednisone.. It sure was an interesting ride. I was doing terrible with secondary symptoms to the point where pain and walking were hard, 5~6 hours after my first dose of pred (40mg)and they were all gone. It was a crazy miracle. I was crying.. I couldn't believe how fast the pain went away and how I could walk with no pain at all.

Now here I don't know what exactly it was? combination of everything?! I don't know.. But tapering off prednisone and starting 6mp at the same time (off one and onto the other at same time). physically this was all fine. Mentally, wow I had some crazy crazy thoughts running through my head to the point i was scaring myself (for 20mg -> 15 -> 10 -> 5mg part of the taper). These all went away with the pred being gone so I attribute it mostly to getting of the pred. But it was defiantly a noticeable affect. First time I have ever really had something that affected my thought patterns so drastically.

I am currently on Lialda and 6mp. I take the 6mp as soon as i wake up (8am). Then head into work and get a bagel and cup of coffee and take the Lialda(9am). Then feel light nausea that lasts tell 3~pm. (which is by far an easy trade off to how i felt during my flares)
Ya i am tapering of prednisone now and man it really can make my moods stronger then i intend for them to feel! can not wait to be off it. thank you so much for sharing
 
Also in my signature, but here's a bit on my experiences…

Prednisone: I had a very, very bad time with Pred. It did its job, but I had severe insomnia. I slept maybe two hours every two or three nights. They wouldn't give me anything to help me sleep because I was underage, so I just had to deal with it. Eventually, I started hallucinating from the lack of sleep and they tried to taper me off more quickly. It didn't work, as I couldn't even stand up after we cut down the dose, so I had to go back up and continue with a taper that was in between the original and the modified one. I also ate like crazy. Every morning, I had six eggs, four pieces of toast, and a half a pack of bacon. This is incredible, considering I ranged from 90 to 103 lbs while on Pred. I was physically exhausted all the time, but my mind was going crazy - I'd talk so fast I got out of breath and would have to lay down. However, an experience like this is not typical.

6-MP: I only took this for about a month, so I'm really no good with advice or information on it. I didn't feel any side effects, but then again, I was also on Prednisone at the time, so anything it could have done would probably have gone unnoticed. I'm thinking of asking to get back on this one.

Methotrexate: I had good luck with this. I switched from 6-MP to methotrexate because I couldn't swallow pills, so the injection worked better for me. I took it for maybe a year to two years… I can't remember well because the Prednisone has messed up my memory of that time period. It worked well for me - I definitely felt better while taking it.

Pentasa: Like 6-MP, I had trouble with this one. Pentasa comes in massive capsules, which I just couldn't get down with any level of success. I was prescribed 8 of them a day… I'd get maybe two down. The next day, I might get all eight, but the day after I wouldn't get any of them. If I can't take it regularly, there's really not much point, so I notified my GI's office and I'm waiting for my next appointment so I can see about getting something else.

Just keep in mind, that everyone reacts very differently to the different medications. Please don't make decisions based solely off of others' experiences, because yours will very likely be different. With that said, you might want to check out the Treatment section of the forum. There are subsections for the commonly used medications, and most of them have stickies giving you an overview of that medication.
Re:pentasa. I was offered it in a disolvable form. Maybe worth asking for.
 

SarahBear

Moderator
Location
Charleston,
Re:pentasa. I was offered it in a disolvable form. Maybe worth asking for.
I'll ask about that, thanks!

I asked around here once, and did a google search that turned up no other ways to take Pentasa. My GI's office didn't mention it either when prescribed, or I called back to tell them I couldn't take it, so maybe there's some issue with it that causes them not to use it. I have no idea, but I'll ask!
 

SarahBear

Moderator
Location
Charleston,
i do not know what it is like to sleep, i literally can not stop consuming food and like you said, my body is tired but my mind is not, it is such a false sense of energy!
Could you ask your doctor to give you something to help you sleep? It's typically not a problem, they just wouldn't give it to me because I was seventeen at the time.
 
Also in my signature, but here's a bit on my experiences…


Pentasa: Like 6-MP, I had trouble with this one. Pentasa comes in massive capsules, which I just couldn't get down with any level of success. I was prescribed 8 of them a day… I'd get maybe two down. The next day, I might get all eight, but the day after I wouldn't get any of them. If I can't take it regularly, there's really not much point, so I notified my GI's office and I'm waiting for my next appointment so I can see about getting something else.

DD doesn't take pills yet, but we broke these open and took them in applesauce. Not quite as effective, as they are formulated to be released in the distal intestine, but better than not getting any in, KWIM?


Sarah, I'm interested to hear where your disease is, and what you've tried. Again, in my siggy, but my dd has been on prednisilone, pentasa, enteral nutrition via ng, VSL #3, Remicade, Humira, fish oil, diet modification, Flagyl. She has been practically symptom free on Tacrolimus and Bactrim for six months.
None were particularly horrible as far as side effects, but most did nothing. She had terrible retention on Pred, and was steroid dependant, but it eventually stopped working. The enteral nutrition staved off the weight loss we were fighting at the time, but the tube slid out after a month and we chose not to reinsert it.
HTH!
 
Hey

I was curious what medication do you take for your Crohns and have taken?

What is your opinion on it?
Positive:
Negative (including side effects):

Thanks! I feel like there are medications out there that I do not know about and because of that, do not have all the knowledge to make the best choices for treatment for me!
Love to your Bellies
what have they put you on, can give you experience sof the actually drug then rather than random ones that we are all on x
 

SarahBear

Moderator
Location
Charleston,
DD doesn't take pills yet, but we broke these open and took them in applesauce. Not quite as effective, as they are formulated to be released in the distal intestine, but better than not getting any in, KWIM?


Sarah, I'm interested to hear where your disease is, and what you've tried. Again, in my siggy, but my dd has been on prednisilone, pentasa, enteral nutrition via ng, VSL #3, Remicade, Humira, fish oil, diet modification, Flagyl. She has been practically symptom free on Tacrolimus and Bactrim for six months.
None were particularly horrible as far as side effects, but most did nothing. She had terrible retention on Pred, and was steroid dependant, but it eventually stopped working. The enteral nutrition staved off the weight loss we were fighting at the time, but the tube slid out after a month and we chose not to reinsert it.
HTH!
Hi! I'm glad you and your daughter have finally found something that helps her! :)

When I was diagnosed, my disease was throughout my entire small intestine (inflammation and ulcers of varying sizes), with mild chronic inflammation in the large intestine as well. Currently, my tests are showing no evidence of Crohn's at all, but I am feeling symptoms more severe than when I was diagnosed. To be honest, I have no idea what's going on.

All of the medications I've been on are listed in my original response (Prednisone, 6-MP, methotrexate, Pentasa). I have an appointment with my GI on December 11th. I'm going to ask about trying 6-MP again; if I recall correctly, the pills aren't very large and can be chewed if necessary. I only remember taking one a day. Since I'm very hit-and-miss with pills, I'm thinking this would be my best option. I can't do the Pentasa because there are so many so often. With less (and the last resort of chewing it up) I think I can get them down and get better at taking pills.

I tried emptying the Pentasa in applesauce, but to be honest, its just a bit too tedious for me. Since there's so many granules in one capsule, it's a mess and a lot of applesauce (as I'm sure you know!). I'd prefer to do this only as a last resort.

Edited: Hmm, looking back I'm thinking you probably meant OP instead of me. Haha, sorry.
 
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I KWYM; Pentasa can end up being a PITA. tHE MOST SHE WAS ON WAS 6 A DAY, but I know many have to take a lot more. We used very little applesauce but she generally washed the granules down with water.

What about you, SarahChoueiry? What are your symptoms and what have you tried?
 
What is T3?
Hey Sarah,

It's short form for tylenol 3, which is regular strength tylenol 325mg with 30mg of codeine. Codeine is a narcotic and should be taken with care as it can be addictive. I get them prescribed for my abscessing and fistula pain. Narcotics only mask the pain and do not fix the problem causing the pain. They are not the answer!
 
Agreed smallfry...I can't remember the term for it but regularly taking narcotics for pain can not only be addictive, with long term use it can actually increase pain. It helped give me a better understanding why docs don't regularly give pain meds to IBD sufferers.
 
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