Talked to my GI today about getting off Pentasa

I'm really tired of the tinnitus. I took a 2 month break from Pentasa this summer and the ringing got about 90% better, but I went back on to preserve my remission. The ringing's back where it was at its worst and I hate it. My GI recommended Colazal for now, in addition to the sulfazine I'm also taking. He and I are somewhat concerned that Colazal won't treat the small bowel. He's thinking that anything that treats the small bowel is also going to give me tinnitus, since it's a reaction to absorption of salycilate, which happens in the small bowel. I'm kind of stuck between a rock and a hard place because neither the GI or I want to go to a different medication modality if 5-ASAs are working. In the past my inflammation has been in the rectum, cecum and ileum, with a little gastritis and esophagitis thrown in there for fun. It's been a couple of years since my last scope and aside from motility issues I'm feeling pretty darn good. So fingers crossed that this med switch is not going to kick me in the butt, ha ha.

Anyway, I'll give it a shot. Colazal is available in a generic so it will be nice to get a break from the $200/month Pentasa habit.

This week I had dinner guests twice and I'm leading a chili cook-off team this Sunday. Plus my 40 hour work week, parenting 2 ****s and an early-morning exercise program M/W/F. I woke up today and realized I was really, really exhausted. I told my boss I'd work from home, which I did, and after lunch I took a 10 minute nap that turned into an hour. Oops. Now I'll be up to the wee hours. But note to self: do not schedule another week like this one ever again.

kazbern - what if you went down to 2 gms of Pentasa a day? Do you think it might be worth giving that a shot to see if the ringing stops. I have it too on and off. Mine was much worse when my middle ear was totally filled with fluid for an entire year. It went away after I was on my back for 3 days in the neuro ICU. The fluid went away and the ringing stopped. I'll never know if it was all caused by the Pentasa. I was off of it for that time but went back on right away. I've been on the whole 4 gms for several months again and so far it's not too bad

NY Veggie & gumby - I had taken myself down to about 2g/day for many years, and that seemed to be fine. I wasn't feeling as well back then as I am now, but I also know that the gluten-free thing I started this summer really improved my bowel health and my general energy level. In fact, I give credit to the gluten-free diet for the tinnitus too - I think my small bowel absorption increased a lot after the gluten was gone and thus the worsening tinnitus that coincided with going gluten free.

Also, at the time that I joined this forum, when I was on 2g Pentasa per day, I was in the middle of an incredibly stressful period of my life - our house had burned down and we were rebuilding, and the marital strain was enormous. I was pretty sick by the time I logged on here (at least for me). I'd lost some weight, had no appetite or energy and lots of joint pain. I can't really blame my low dose of Pentasa for that, but I can't say for sure that it was right to be taking so little of the med.

But I agree with you - I think my preference is to stick with Pentasa at a lower dose. I am going to trust my GI on this though - he wants to try the Colazal for a month or two to see what happens and adjust from there.

Gluten is a complicated protein that is difficult to digest for some people, not just those with celiac disease. There is a lot of evidence in the medical literature of late that gluten sensitivity is either growing or becoming more apparent. Perimenopausal women seem more prone to it, as well as those with IBD. I think the theory is that healthy bodies partner with gut flora to break down the gluten protein. People with celiac disease are missing an enzyme to start this process and the undigested parts of the gluten protein causes damage to the villa in their small intestine. People with gluten intolerance are thought to be missing some of the necessary gut flora and the result is not necessarily damage to the villa but unpleasant gas, crampiness and soft stool.

After years of medicine I was still having bouts of soft stool and plenty of cramps and discomfort. My friends had observed that I felt better during the 8 days of Passover when I ate very little wheat. So I thought I'd give a gluten free diet a try and within 2 weeks of eliminating gluten I felt a whole lot better. So I'm sticking with it.

What about adding Imuran? I've been doing wonderfully (knock, Knock, KNOCK) on the combination of Imuran and Pentasa. The Pentasa alone wasn't enough for me. However, the Imuran alone also hasn't been enough for me either. (Originally started on Imuran in 2003 along w/Cipro for the first 6 months of Imuran - didn't want to take pred or Entocort so the Cipro was substituted). But the combo has kept me in remission or symptomatic remission all these years. I do cheat on occasion and can get by for 2-4 months on just 2 gms of Pentasa along w/the Imuran but then mild symptoms will start and I immediately go back up to my scripted 4 gms and the symptoms subside. (knock, Knock, KNOCK).

Hey all, Onchino brought this old post back up to the top of the forum, and I thank you CrohnieToo and 73monte for your comments. There was a paper out earlier this year that tried to evaluate the efficacy of all the different treatment regiments we're using and the results for Pentasa were that it was not seen as particularly effective in inducing remission, but that there was reasonably good evidence for maintaining remission. My GI and I have gone over this topic for many years, and he is adamant that I am "not sick enough" to move up from the ASAs to other kinds of treatment. So right now I'm using generic colazal (basalazide) and it seems to be working fine. Although the jury's still out - this past weekend I felt like crap and my knee was killing me - it is also true, however, that as per my usual forgetfulness, my midday dose has gone mostly un-taken. So I have to be more vigilant with that for a true evaluation. The tinnitus is almost all gone, though, and that's nice.

I also have Tinnitus from Pentasa.

My dose is 4 g/day oral and 2x1000 mg in supposittories.

I am getting mixed advice from my GI Doc (who says keep taking it) and my Pharmacist (who says the tinnitus will just get worse and worse if I keep taking Pentasa).

The Pharmacist says Pentasa is related to Aspirin. They are in the family of drugs called the Salicylates and she says she thinks I am on too much or am having a sensitivity reaction.

Classic 'salicylate' toxicity is symptoms such as "ringing in the ears" and "dizziness" (as it affects the vestibular/balance centre of the brain), etc.

*sigh*

mvond5, you may want to make a new thread with your question so more members will see it. Sometimes members overlook these old threads when they are brought up. Click Post New Topic, type in a heading & you can copy & paste what you have written above as your body of your post.

Take care.