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05-12-2014, 01:46 PM   #1
Paigeyd90
 
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Pentasa

A couple weeks ago I was diagnosed with Crohn's. My doc put me on Pentasa. He said that it is milder and shouldn't give me as many side effects. What are everyone's thoughts on this medication? I'm so new to Crohn's so I'm still learning! I have severe constipation so I am also on Colace and taking benefiber twice a day. So much to remember to take!
05-12-2014, 01:59 PM   #2
theOcean
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It's really mild, and because of that unfortunately was completely ineffective for me. So it really depends on the individual, where their IBD is located, etc. Some people find it really effective, though. How has it been for you so far? Are you noticing your symptoms are improving at all?

If you want to learn more about 5-ASAs like Pentasa, there's also a really comprehensive post about it here that explains the differences between all of them. It's pretty interesting!
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-12-2014, 02:04 PM   #3
Paigeyd90
 
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It's really mild, and because of that unfortunately was completely ineffective for me. So it really depends on the individual, where their IBD is located, etc. Some people find it really effective, though. How has it been for you so far? Are you noticing your symptoms are improving at all?

If you want to learn more about 5-ASAs like Pentasa, there's also a really comprehensive post about it here that explains the differences between all of them. It's pretty interesting!
Great! Thanks for the link! It's helpful! I feel okay so far. Since I have the severe constipation its hard to tell yet. I am trying to get regulated while also getting my Crohn's in check. The crohn's is in my small intestine. I just feel really shaky almost. Is that normal?
05-12-2014, 02:07 PM   #4
theOcean
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Some people report nausea and maybe some anxiety when they first start taking 5-ASAs, and try to gradually increase them up to their prescribed amount and have an easier time of it that way. Otherwise, unfortunately, it's probably just your body adjusting to the medication still. If it doesn't go away I'd mention it to the GI.

Alternatively it might be some kind of deficiency, but I'd hope not.

Is the Colace working for your constipation?
05-12-2014, 02:09 PM   #5
Paigeyd90
 
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Some people report nausea and maybe some anxiety when they first start taking 5-ASAs, and try to gradually increase them up to their prescribed amount and have an easier time of it that way. Otherwise, unfortunately, it's probably just your body adjusting to the medication still. If it doesn't go away I'd mention it to the GI.

Alternatively it might be some kind of deficiency, but I'd hope not.

Is the Colace working for your constipation?

Yes the colace has been great and I have only been using it for a few days. The benefiber is also good! I was worried that the colace would make me then have diarrhea but it has been making me regular and almost like a regular person! LOL!
05-12-2014, 02:16 PM   #6
theOcean
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Lucky! I've been suffering constipation problems as well now that I'm in remission, but didn't have any luck with it. I might look into the Benefiber you're taking for myself, though.
05-12-2014, 02:52 PM   #7
Ali29
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I have been on Pentasa since Feb 2014, it has helped some but my GI has continued to have to add medications. While Pentasa is not quite so scary to take than some of the others, I feel I'm going to need a change. My Crohn's is in the small intestine with D and not constipation. I'm glad I started on something a little less scary. With all the information I've learned here - if I do have to graduate to a higher class medication, I'm not so afraid. So far it has not caused any kidney/liver damage so that I am thankful for.

Hope it works for you - Good Luck!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
05-12-2014, 04:37 PM   #8
Daisy123
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I have been on Pentsa for about five years, it doesn't seem to have any side effects. I take it in combination with azathioprine which generally keeps me in remission. I should be starting Remicade soon, which does scare me a bit.
05-13-2014, 05:01 AM   #9
Axelfl3333
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I,ve been on pentasa a for about 2 years and feel it has helped although I,m having a feeling Ill spell just now and have been told to up my dose to 8 tablets a day I personally find when I take that many I get bloating and wind and constipation very uncomfortable it does take a bit of time to hit a happy medium especially if things change,never alter your meds without speaking to your dr or clinic nurse luckily my gi nurse is very approachable.
05-13-2014, 05:24 AM   #10
Daisy123
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God I wish Pentsa would firm up my stools! I am on 8 a day which I take in two doses.
05-13-2014, 09:47 AM   #11
Ali29
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I take 2 capsules 4 x a day. When the GI added the Prednisone (Entocort caused severe cramping) - the D was cut to once a week (that happened within this last week)!
05-13-2014, 12:09 PM   #12
Paigeyd90
 
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I have been on the Pentasa for a full 24 hours now and I have a horrible headache. I will watch it and see if it subsides but does anyone have issues with headaches on this med?
Thanks for all the responses! It has been helpful!
05-13-2014, 12:23 PM   #13
theOcean
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I never did when I was on it for the two years, no. I suffer from chronic migraines regardless, though.

Try to drink/eat/maybe nap and see if the headache goes away. I always try to do those three things first before resorting to taking a Tylenol.
05-13-2014, 12:23 PM   #14
Ali29
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I have not experienced any headaches on Pentasa. I know everyone has different experiences. On the WIKI on this Forum for Pentasa - headaches do show as a side effect of about 2%. Take a look on the WIKI, lots of good info on there.

Hope you feel better!!
05-13-2014, 12:44 PM   #15
Daisy123
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I get migraines but don't associate it with Pentsa. I think it is when I drink too much water and cause my electrolytes to be out of balance. I find amitriptyline helps if I can take it early enough but I think it might be dehydration. It might be worth trying an electrolyte replacement when the headaches start.
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