I have seen several of your posts and you are obviously very knowledgeable.
I have been on Pentasa since 2004 with absolutely no issues. My initial dose was 4g per day (at the time, 4x250mg x 4 times per day). Initial colonoscopy revealed small ulcer at bottom of small intestine. Since that time, I have been able to reduce Pentasa to 2g per day (even less at times) with no reduction in effectiveness.
Flares have been almost nonexistent (maybe two small, brief flares in 11 years) and possibly as much related to relaxing my diet as anything else (I also did try to slowly take myself off Pentasa which probably didn't help). I can generally eat most anything in moderation (believe me, I count myself lucky there), but believe too much of a few items (coffee, dairy, red meat, fried foods, etc) may cause me issues over a period of time. Over the past 3 or so years, I have become much more cautious with my diet.
Three weeks ago, a ringing started in my left ear. Recognizing that Pentasa is a salicylate (of sorts), I stopped taking the Pentasa two days later. My tinnitus fluctuates in volume and on a lower volume day, I took 2- 500mg Pentasa (approximately 4 days after stopping). The tinnitus seemed to increase so I stopped (after taking the 2) for over a week. I finally decided the tinnitus might not be Pentasa related (there doesn't seem to be much info on long-term use of Pentasa resulting in tinnitus, so I was skeptical- this website is about the only reference I have found regarding long-term use resulting in tinnitus). I took 2 Pentasa and tinnitus seemed to increase the following couple of days (I only took the 2).
about 4 days later, and after doing further research on tinnitus, I finally decided my tinnitus, based on symptoms, might be "somatic tinnitus," as it only results in one ear, has wide fluctuations, has no regular pattern, etc. I also find myself waking early (like 4:30am) with possible clenching and/or grinding of teeth. As a test, I decided to try taking 1 - 500mg Pentasa morning and night, starting Monday night. Tuesday and Wednesday were two of the best tinnitus days I have had. Thursday morning, the tinnitus slightly increased again although it is not overwhelming (still taking 1 - 500mg morning and night).
My questions for you (as I believe I read you also were on Pentasa for 10 years or so).
Was your tinnitus consistent in volume, or did you have large variations? Was it in both ears?
Since I read that Pentasa is only med to release in small intestine, what med replaced that for you?
Does the salicylate level in the body lower over time allowing a return to Pentasa at some point, if necessary, or has the tolerance been permanently altered, and making us unable to accept more Pentasa?
Like you mentioned in one post, I would hate to leave Pentasa as great as it has been, but not sure that I can deal with the tinnitus long-term, if it is the cause of my tinnitus.
Thanks for your time!
Post Edited (bigbangfan) : 2/19/2015 8:52:32 PM (GMT-7)