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03-23-2016, 06:14 AM   #1
ImDan
 
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Stopping Pentasa

I went to visit a new private GI this week (apparently one of the best in the country) and he told me to instantly stop the Pentasa as it's useless for Crohns. He said not to taper down off it either.

I stopped taking it last night and today I feel really weird, lightheaded, dizzy and feeling a little sick. Is this just the side effects of my body going without the drug? I was only on it for around 6-7 months.
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  • 24 Years old - United Kingdom.
  • Colonoscopy, CT Enterography and Prometheus blood test consistent with CD. No symptoms so far.
  • Currently unmedicated
03-23-2016, 08:34 AM   #2
ronroush7
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Not sure. I hope you feel better soon.
03-23-2016, 11:26 AM   #3
nitty
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If mesalazine is that useless, how come stopping it is what sent me back into a now year-long flare, despite also being on Azathioprine at the time?

It may not be any good to induce remission, but it helped me stay in remission until I stopped it because of side-effects, thinking it was too minor a drug to be helping me.

Little rant over.
03-23-2016, 11:40 AM   #4
ronroush7
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I guess different drugs are useful for some but not for all.

03-23-2016, 12:14 PM   #5
ImDan
 
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If mesalazine is that useless, how come stopping it is what sent me back into a now year-long flare, despite also being on Azathioprine at the time?

It may not be any good to induce remission, but it helped me stay in remission until I stopped it because of side-effects, thinking it was too minor a drug to be helping me.

Little rant over.
Yeah I feel like it must do something, at least for some people.

Honestly I would have been happy staying on it, because now I'm completely unmedicated while I wait to have more tests
03-23-2016, 01:25 PM   #6
nitty
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I'm sorry about mouthing off a bit, as it wasn't very helpful for your query.

I get a bit cross though when some doctors dismiss a drug outright when it really can be beneficial for some people. Unfortunately, like me, you may not know whether it has been helping you until you have been off it for a while (for me, my symptoms gradually crept back over a few months).

What were your symptoms that prompted the investigations before you started the Pentasa, and did you notice an improvement whilst you've been on it? Are you having any side-effects that would make you feel like trying without it?

I only stopped because I was having side-effects which were making day-to-day life difficult (fatigue and muscle and joint pain). Sadly, then my symptoms started up again, and I have spent the last year trying to get back into remission (now on Pred and Humira) which is still proving hard to get to.

If you've only missed one dose so far then you could always carry on taking it for a few more days until you've had a bit more of a think about it.
03-23-2016, 08:49 PM   #7
Rich Pell
 
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I went to visit a new private GI this week (apparently one of the best in the country) and he told me to instantly stop the Pentasa as it's useless for Crohns. He said not to taper down off it either.

I stopped taking it last night and today I feel really weird, lightheaded, dizzy and feeling a little sick. Is this just the side effects of my body going without the drug? I was only on it for around 6-7 months.
Interesting.
I have been on Mesalamine for 3 weeks after 60 days of Entocort, dx with CD 4 months ago.

I read Apriso alone doesn't treat CD appropriately, trying to get an appointment with a new doctor, will stay on med until he and I make a decision.

Hoping you have an uneventful transition ImDan.
03-23-2016, 08:57 PM   #8
Clash
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Since 5ASAs work on the top layer of inflammation then you may get some response from them but since CD is transmural (affects all layers) then you aren't treating the full scope of inflammation. 5ASAs do work for some people with mild CD. It's approved for UC and prescribed off label for CD.

Here is a link to a thread the Cochrane Review on 5ASAs were discussed, the first post is the studies done on 5ASAs and published in the Inflammatory Bowel Disease book. It's all a very interesting read

http://www.crohnsforum.com/showthrea...ochrane+review
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-23-2016, 09:49 PM   #9
ronroush7
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Best to you

03-23-2016, 11:28 PM   #10
Cross-stitch gal
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I went to visit a new private GI this week (apparently one of the best in the country) and he told me to instantly stop the Pentasa as it's useless for Crohns. He said not to taper down off it either.

I stopped taking it last night and today I feel really weird, lightheaded, dizzy and feeling a little sick. Is this just the side effects of my body going without the drug? I was only on it for around 6-7 months.
How are you feeling now? I would say that if the feeling doesn't get better or is bothersome to make sure to contact your doctor's office. Also, when are these tests happening? I hope you will get some results soon and that you'll be taken care of.
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
03-23-2016, 11:34 PM   #11
ronroush7
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How are you feeling now? I would say that if the feeling doesn't get better or is bothersome to make sure to contact your doctor's office. Also, when are these tests happening? I hope you will get some results soon and that you'll be taken care of.
Amen

03-25-2016, 09:55 AM   #12
Grumbletum
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I'm in a mild flare at the moment. Put on Pentasa about 6 weeks ago and it seems to be working.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-25-2016, 09:56 AM   #13
ronroush7
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I'm in a mild flare at the moment. Put on Pentasa about 6 weeks ago and it seems to be working.
That is great

03-25-2016, 04:02 PM   #14
stylinmama
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Since 5ASAs work on the top layer of inflammation then you may get some response from them but since CD is transmural (affects all layers) then you aren't treating the full scope of inflammation. 5ASAs do work for some people with mild CD. It's approved for UC and prescribed off label for CD.

Here is a link to a thread the Cochrane Review on 5ASAs were discussed, the first post is the studies done on 5ASAs and published in the Inflammatory Bowel Disease book. It's all a very interesting read

http://www.crohnsforum.com/showthrea...ochrane+review
I wish this was like FB and we could just "like" stuff. Lol. This has been what my research tells me as well. It's like putting a bandaid on a rash and expecting it to stop the spread. This drug may get rid of your clinical symptoms, but it does not actually get rid of the inflammation. So it might work for awhile, and then when the inflammation that remains starts causing other issues (like narrowing, or spreading to other parts of the body) then you will need something that actually works on ALL of the inflammation instead of just the surface. With this drug, your clinical symptoms may go away, but your intestine could be still being damaged only you don't know because ATM you feel fine.
03-25-2016, 04:23 PM   #15
Eridon2002
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The GI doc prescribed me Mesalamine (Lialda) when I was first diagnosed. Didn't do anything for me, but at least no side effects either. I was in a moderate flare when it was prescribed to me.
03-29-2016, 11:12 AM   #16
Rich Pell
 
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Since 5ASAs work on the top layer of inflammation then you may get some response from them but since CD is transmural (affects all layers) then you aren't treating the full scope of inflammation. 5ASAs do work for some people with mild CD. It's approved for UC and prescribed off label for CD.

Here is a link to a thread the Cochrane Review on 5ASAs were discussed, the first post is the studies done on 5ASAs and published in the Inflammatory Bowel Disease book. It's all a very interesting read

http://www.crohnsforum.com/showthrea...ochrane+review
Thanks for the link Clash, hadn't come across this one.
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