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Ulcerative Colitis
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Posted 1/10/2013 3:09 PM (GMT 0)
Can someone tell me what my options would be if I can't use these any longer? I use a 1g suppository at night. I've been using them for two years. Also why do people have success with one mesalazine based medication and not another? That's confusing. I've even read on here people state they can't tolerate mesalazine, but in their meds lists says they use canasa or rowasa? I'm Scared of what options I'd have if I couldn't use pentasa. Having to monitor platelets is scary, even of it is for caution. :(
Posted 1/10/2013 3:14 PM (GMT 0)
when most people speak of not tolorating 5-asa they mean ORAL, but a few are sensitive to both oral and rectal.

the main difference between most 5-asa is the delivery mechanism, such as enteric coating, or binding molecule that gets split in terminal ilium ... etc. Some older forms are buffered with sulphide which can be a problem in itself.

if differences in formulation are not a problem in the tolerance sense, then where each one is designed (and actually does in your case) release can dictate degree of individual benefit or not.

Are you developing an intolerance?
Posted 1/10/2013 3:14 PM (GMT 0)
I often wonder what would happen if I simply stopped them. I know I'd get mucous, blood and puss type discharge, but I suffered with that for two years without seeing a Dr. I was diagnosed with Mild proc***, hasn't changed in last two scopes.
Posted 1/10/2013 3:14 PM (GMT 0)
Why shouldn't you use the Pentasa suppositories anymore? Are they working? I don't understand your concern. There is very little systemic absorption of anything from the colon.
Posted 1/10/2013 3:15 PM (GMT 0)
I'm not sure why that is. My disease didn't respond to Pentasa, but it did respond to Rowasa and Asacol. I'm not sure what your options would be. For me, if I stopped responding to Asacol, my doctor said the next step would be Remicaid. Have you discussed other options with your GI?
Posted 1/10/2013 3:17 PM (GMT 0)
I'm not sure if it's intolerance but Im getting bleeding
Noses, easy bruising. They are checking my platelets weekly till I see a GI end of this month. I also have been getting mouth ulcers. Sore ears and ringing in my ears, started at the same time I started pentasa.
Posted 1/10/2013 3:18 PM (GMT 0)
Pentasa does work for me. I'm worried I will have to stop because of side affects.
Posted 1/10/2013 3:24 PM (GMT 0)
You could try switching to canasa or mesalamine enemas. I know that some people have issues with Pentasa and are OK using other rectal mesalamine formulations.
Posted 1/10/2013 5:02 PM (GMT 0)
ORAL Pentasa can give you ringing in the ears. Rectal Pentasa wouldn't if I understand things correctly.

Rowasa will work better because it's a 4g dose instead of a 1g dose maybe?

Are you taking flax seed oil by any chance? I think this can reduce clotting factors.  Have you had your clotting factors tested?  There's also a problem with clotting factors linked to malabsorption typical of Crohn's disease.

Posted 1/10/2013 9:27 PM (GMT 0)
I have had them done and they are normal. All my Vit levels are perfect.
Posted 1/10/2013 10:55 PM (GMT 0)
IT does not sound like the Pentasa is the problem. The timing might just be coincidental. There is very little systematic absorption. If you had a strong 5-asa allergy, it should show up with any rectal 5-asa. Have you tried others?
Posted 1/10/2013 11:09 PM (GMT 0)
Ive been using pentasa supp for over two years. Never needed anything else.
Posted 1/10/2013 11:14 PM (GMT 0)
Bleeding noses and bruising, mouth ulcers have started in last few months. Have had full blood count and weekly coags, it's making me nervous. I hate living in fear. The irony is I got proctitis from medication, what next? How long before we know the long term affects.
Posted 1/11/2013 1:41 AM (GMT 0)
Pentasa was the first med I was on, then went to Lialda. I knew I had an allergy to sulfa meds, but it was very evident when I did not tolerate either of those meds.

Imuran changed my life! I was nervous and extremely over cautious when I started it. I've been on it since March and have been doing well. We will see if it holds after I am completely off prednisone.
Posted 1/11/2013 5:34 AM (GMT 0)
Good luck 46&crashing.. All my tests came back clear again, inflammatory markers had actually improved since last one. Bloods are normal, bleeding and bruising a mystery. I have to say though I've had bleeding nose issues since I was a kid, and my mum used to bruise easily. I noticed I go through stages of bruising. Im not taking any chances, my trust in Drs got me here.
Posted 1/11/2013 2:43 PM (GMT 0)
I think you could substitute a steroid suppository for 6 weeks without any real risk of steroid side effects. IF you platelet condition does not change, then it likely has nothing to do with Pantasa.
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