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09-21-2014, 10:39 PM   #1
glory_h
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Stopped Pentasa

So... my prescription ran out and I have about a month until my next doctor visit. I've read a lot lately about Pentasa not really being effective for Crohn's, that it's more useful for Ulcerative Colitis. I also have just had a gut feeling (pun intended!) that it wasn't doing much for me. So I just stopped taking it!

So far, I feel just about the same. My symptoms weren't severe - that's why I was on such a mild medication. One difference is in the consistency of my stools. They went from a 4/5 to a 3 on the Bristol scale.

I know that just because my guts don't hurt doesn't mean there isn't inflammation that can cause damage, so I am planning to discuss treatment with my GI next appointment.

Just curious if anyone has thoughts on this or has also stopped taking Pentasa for Crohn's.
09-23-2014, 11:35 AM   #2
valleysangel92
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You really shouldn't wait a month to discuss this with your doctor. Do you have an IBD nurse you can contact who could get a script sent to you or that you could at least inform that you've run out?

I know you say you don't feel much different, but that doesn't mean the medication isn't working. Sometimes it can take days or weeks for the medications to wear off and then you can really be in trouble. Also, medications like pentasa take a few weeks to work at their full potential , so stopping it for a month and then potentially going back on it would be like starting from scratch all over again.

If you do want to come off pentasa you will need to replace it with something else. If you feel it's not working for you then you should tell your doctor and see if you should try an alternative such as an immunosuppressant.

I'm not trying to lecture you or anything like that, I just think it's a really important thing that you at the very least contact your nurse or even your PCP and let them know you've stopped your meds as coming off medication by yourself can cause all sorts of problems.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
09-23-2014, 12:21 PM   #3
LodgeLady
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I am getting body aches on it but it's working. I tried lowering the dose to 3G and after 4 days during the nausea and cramping returning. So I upped back to 4G and all the pain and nausea went away. You definitely may feel the repercussions from stopping it weeks later, I say talk it over with your doc.
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09-24-2014, 07:45 AM   #4
lbligh
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Have you had bloodwork done? It would be a good idea to see how your inflammatory markers are looking.
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My 13-year-old daughter was diagnosed with Crohn's 12/2013, via endoscopy, colonoscopy biopsy, and MRE.

After four months of little improvement with Pentasa and Prednisone, we tried the Specific Carbohydrate Diet. Almost overnight, all the symptoms resolved. Currently off all meds. Bloodwork is completely normal.
09-24-2014, 03:42 PM   #5
LodgeLady
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Yes I had an elevated sed rate last bloodwork. Not high enough I guess for him (GI) to be concerned about. Net appointment I'm going to ask for that fecal call protein test? Hope I'm saying that right.
10-08-2014, 10:16 AM   #6
glory_h
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Hello, just wanted to give an update. It's been almost three weeks since I have taken Pentasa and I have to say, I am feeling pretty good. I'm feeling much better than I was when I was on it. No diarrhea, less cramping, overall better energy. I am NOT encouraging anyone else to stop their medication! Just thought it'd be good to share all different kinds of experiences on here. I'm quite surprised by how I am reacting. Also as an aside I am able to eat foods that would cause me instant distress previously. I'm being cautious but have tried potato chips and a doughnut, with no repercussions. Wow.
11-12-2014, 05:56 PM   #7
keita
 
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Hello, just wanted to give an update. It's been almost three weeks since I have taken Pentasa and I have to say, I am feeling pretty good. I'm feeling much better than I was when I was on it. No diarrhea, less cramping, overall better energy. I am NOT encouraging anyone else to stop their medication! Just thought it'd be good to share all different kinds of experiences on here. I'm quite surprised by how I am reacting. Also as an aside I am able to eat foods that would cause me instant distress previously. I'm being cautious but have tried potato chips and a doughnut, with no repercussions. Wow.
It's fantastic that you are still feeling well, but would still be good to get in contact with your doctor and keep a very careful watch. I stopped taking my Pentasa for a couple months because I had been in remission for so long but after that my symptoms came back with a hiss and a roar, so had to go straight back on it again.
01-21-2015, 12:34 AM   #8
POTTYTIME!
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Im on pentasa and headed back to doctor because I would be better with a hand full of pain killers than this junk. Only thing is the doctor has to start somewhere before the insurance company will approve something better "which means more money". Its your call on what you take but if you dont take them cant make a clear deduction that they do or dont work. Thanks
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