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Can pentasa be causing my problems?

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Crohn's Disease
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Posted 12/25/2007 12:43 PM (GMT 0)
Yesterday I noticed I didn't have as much diarrhea as usual and not alot of cramping.  I realized I had only taken 6 of the 8 pentasa capsules I was suppose to take.  It seems my crohns got worse in this department when I started on the pentasa.  My disease is in the terminal ileum.  What other drugs work in that area as far as antiinflammatory agents??  Anyone else with pentasa issues??

Thanks

Chris

Posted 12/26/2007 12:16 AM (GMT 0)
Hi Chris,

I have just started Pentasa. My Crohns is in the terminal ileum also and i have had surgery to have it removed. Was doing fine for a long time and now the symptoms seem to be kicking in again so my doctor prescribed Pentasa. Unfortunately since starting it, it feels like everything has gotten worse especially the D and bloating. I am only on a small dosage as my condition would be considered mild at the moment although the D is making my life hell. I am also wondering should i stop the Pentasa and ask for something else. I just don't know what other anti inflammatory is suitable for mild Crohns and my doctor is not very forthcoming with info and doesn't really want to prescribe any medication at all to me. I am waiting to see a new GI but it could be a few months so i would like to try something else in the meantime. Any suggestions. Maybe Pentasa doesn't suit those with Crohns in the terminal Ileum???
Posted 12/26/2007 1:36 AM (GMT 0)
I did not tolerate Pentasa well at all. My GI said that some Crohnies just don't react well to it. had severe D when I took it and was taken off of it within 2 weeks and put back on Asacol and had 6mp added. Unfortunately, I didn't do well with the 6mp either. I hope you find something that works for you!
Claudia
Posted 12/26/2007 1:59 AM (GMT 0)
Hey. I started on Pentasa, oh, two months ago. I too have the big D daily and bloating... but I also have diverticulum (sp)? in the small bowl and thought maybe it was causing this. Interesting. Thank you for bringing this up. I have been seeing the same GI doctor since my hospital stay but am getting my record sent over to my GP doc to take in for a second GI opinion.

Have any of you experienced joint pain? I wonder if that's just a symptom of crohn's OR the Pentasa. This is all new to me, as I was diagnosed this year. The GI doctor looks at me as if I am supposed to have the answers to the many... many questions I ask. This forum has been the ONLY place that I have found answers. I need to create a new post for pain management other than narcotic stuff. The pain is in the same spot as you guys posted and doesn't seem to go away. GI doc says it's time to open me up, but I will get a second (fresh) opinion. Been reading about resections and it seems like once doesn't do the trick, so I want to explore all other options and meds before going down this avenue. Six weeks is a long time to lay up out of work.

Fun stuff. It is very comforting to know that I am not alone. THANK YOU healingwell.com!!

-Leslie
Posted 12/26/2007 11:52 AM (GMT 0)
i am too on pentasa. I think diaherra is a side effect of the medication. I know it is supposed to take it away. I think the pentasa really only helps the large intestine part of it and rectum. Did you try entocort for small intestine? I really am not sure. I dont get diaherra from it. I cant figure out what i get diaherra from when i do get it.
Posted 12/26/2007 6:43 PM (GMT 0)
Chris,
Entocort is an excellent anti-inflammatory which I have been taking for my CD for almost 2 years now, the side effects are non-existant compared with Pentasa. You should ask your GI about it.
Posted 12/27/2007 1:04 AM (GMT 0)
I also found pentasa made the D much worse.
Posted 12/27/2007 2:52 PM (GMT 0)
I was on Pentasa for about 6 years and never got better.  I decided to stop Pentasa and my symptoms got better, less d and cramping.  I went 10 months with no meds, ended up in a flare and have just started Imuran along with prednisone.

Posted 12/27/2007 8:20 PM (GMT 0)
i had a bad reaction to 6mp and just saw the doctor. he prescribed pantasa and this thread doesn't comfort me at all!? :-/ he told me to wait a few days for my hives to clear before filling the prescription - the 6mp did help as i do feel better, but my body decided that it didn't want to cooperate.. do you think if i shared this with him he would reconsider? bah.
Posted 12/27/2007 8:31 PM (GMT 0)
How long were you on the 6MP?  I was on it for 3 weeks, feeling OK, and then started having severe upper abdominal pain.  After 3 days of only getting worse and reading on the net the side effects of 6MP, I went to the emergency room, and sure enough, I had pancrea*** brought on by the 6MP.  I stayed in the hospital on IV for liquids and no food or water for 2 days.  I pushed to come home on Christmas Day, but just started on popcicles and apple juice on the 26th.  Today I had some yogurt.  I was taking pentasa for an obstruction in September, but developed a bad rash and had to stop taking it.  Now I'm only on Entocort 3 mg/3 x/day.  You should probably wait until your current rash completely clears before starting the Pentasa so you will know for sure if the rash returns that it is the Pentasa.  I'm beginning to think about taking myself off all drugs and going the homeopathic route. 

Posted 12/27/2007 8:38 PM (GMT 0)
I was on the 6MP about 4 weeks. I noticed last Friday that my right side had some bumps and was itchy but figured it was from being in a hot movie theater for 2 hours.. come Monday and Tuesday it spread across my lower back and increased in itch intensity. Stopped the 6MP Wednesday. Now I'm just taking Benadryl, nothing for my tummy.

I haven't tried Pentasa yet. He said to wait and see how I feel and when the hives clear fill the prescription. All my blood tests came back fine while I was on 6mp.

My friend Jason, his mom - is a nutritionist and shes been trying to help me go towards a natural method and not medicinal. Which I would prefer. The only other med I was on was Asacol, which did OK but made me really bloated and had trouble sleeping. We've just started corresponding so we'll see what she thinks. Otherwise I'll try to find one local.

My grandmother has heard amazing things for this juice called Goji juice. I've just started reading up on it and told her I'd be willing to try that. I was going to start a new thread asking about others opinions on the juice and if they've tried it...
Posted 12/27/2007 10:48 PM (GMT 0)

OldCrohnie,

How are you feeling.  I can't believe you got pancreatitis from the 6mp.  They say it is painful. What antibiotics do they give you for that to treat it or is it just no food only liquids.  Just wondering.  Hope you rest better tonight.

Posted 12/31/2007 6:17 AM (GMT 0)
I am new to all this Crohn's stuff, but I'm on 16 pills/ 250mg of Pentasa a day. My Crohn's is in a "long section of the terminal illeum and the colon". However, I'm in the very beginning stages even though both the colon and terminal illeum are covered with ulcers and the walls of my colon are thick. The Pentasa has not changed my bowel movements at all. I don't have the D....thank heavens! The pentasa has almost completely taken away my pain. I only get it once in a while. I do have terrible GERD, however and I have to take Prilosec twice a day or I cough my head off. In addition, lately I've noticed dry patches and sores in my mouth. Does anyone else have this problem? I have tender feet and a lot of joint and leg pain. The joint pain and the tender feet are the same as before I started the Pentasa, but the leg pain is a lot worse. Recently, I was asked to take part in a study about the side effects of pain medication and I began wondering if Pentasa could cause bad problems so I find that I'm interested in this thread even though the Pentasa has, in general, really helped me. I lost the flyer for the study so I'm not taking part in it, not that I would have time for it anyway, but still the side effects must be considered.
Posted 12/31/2007 4:41 PM (GMT 0)
I was on pentasa back in july and I had a severe reaction to it...vomiting, passing out, rash, and fever.  Needless to say i didn't see any improvement.  My crohn's is only in my large intestine.  My gi switched me to lialda.
Posted 12/31/2007 7:35 PM (GMT 0)
I was taking Pentasa for about a month or two. My Crohn's is really low down, almost localized to the rectum. At the time, I had some fissures around the anus (exterior) which were quite painful. Those healed up while on the Pentasa, but I seemed to have cramping and some abdominal pain while on the Pentasa. No big D fortunately, although it did really seem to set things free and a rush to the john first thing in the morning was typical. Feeling better without it right now. No meds for me at the moment.
Posted 12/31/2007 8:25 PM (GMT 0)
Nikki0294 Thanks for asking! I'm doing much better this week - starting to eat solids again. Yes, it was very painful - the pain was in my upper abdominal area and radiated to my back. I knew the pain was different from a stricture, but went 3 days taking the 6MP and not eating. Finally, I checked the Net for side effects of 6MP,and there was all I needed to know I had to get to a hospital. There I had an IV for fluids and pain medicine, and abosolutely no water or food. Luckily that only lasted 2 days, and I came home and just stayed on liquids for 2 more days. Have you tried 6MP? I don't know what the next step will be because I do not want Remicade. I also had an allergic reaction to Pentasa. Now I'm just on 3mg Entocort 3x/day.
Posted 12/31/2007 11:30 PM (GMT 0)
my gastroenterologist took me off Pentasa as I read somewhere that it does little for crohns but very effective for colitis and I asked my prof if this was so. He said yes research has shown that and agreed to take me off the Pentasa.
But crohns had flared prior to coming off and it is now being treated with detracortril which I am reducing now.
I have increased the Questran (to help the diarrea) and being VERY careful about food I eat.
I am on top of the situation at present.
I have had one ileal resection but I dont have crohns 'bad' like some.
Ann
Posted 12/31/2007 11:30 PM (GMT 0)
my gastroenterologist took me off Pentasa as I read somewhere that it does little for crohns but very effective for colitis and I asked my prof if this was so. He said yes research has shown that and agreed to take me off the Pentasa.
But crohns had flared prior to coming off and it is now being treated with detracortril which I am reducing now.
I have increased the Questran (to help the diarrea) and being VERY careful about food I eat.
I am on top of the situation at present.
I have had one ileal resection but I dont have crohns 'bad' like some.
Ann
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