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Crohn's Disease Forum » Ulcerative Colitis Forum » If the Pentasa stops working, what's next?


12-15-2015, 10:18 PM   #1
polgara59
 
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If the Pentasa stops working, what's next?

I've been on Pentasa for 16 months, and my UC seemed under control. No bleeding, and a scope in August came back clear. For the past few weeks, my guts have been increasingly obnoxious and in the past several days, the bleeding has returned. I called my GI's office this morning and I have an appointment for Thursday. He's ordered a blood workup and stool samples.

If he decides the Pentasa isn't doing the job anymore, what is the most likely next step for medication? Just curious...
12-16-2015, 05:27 AM   #2
Charlotte.
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I'm sorry to hear it stopped working. I would think immunosuppressants could be the next step: Azathioprine, 6-MP etc. Depends on the approach your doctor follows, maybe anti-tnf's (infliximab, adalimumab etc.), maybe vedolizumab. There is still plenty of medication out there, don't worry too much.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
12-16-2015, 03:17 PM   #3
Lizzie
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I was on the equivalent of Pentasa (Salofalk) and had a really bad flare a few months back, and was put on Prednisolone. I'm still on it, pending results of CT scan and colonoscopy. I'm wondering the same as you, what will the next drug be - not looking forward to it, whatever it is.
12-16-2015, 03:37 PM   #4
Ian_H
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I was on the equivalent of Pentasa (Salofalk) and had a really bad flare a few months back, and was put on Prednisolone. I'm still on it, pending results of CT scan and colonoscopy. I'm wondering the same as you, what will the next drug be - not looking forward to it, whatever it is.
Good questions. All depends on your docs approach. With my experience it was Pentasa and Apriso (another masalamine) to Azathioprine to Uceris to Remicade. With of course the dreaded prednisone for flare control! Although mine is crohns, they are treated very similarly.

I had no problems switching to Azathioprine after Pentasa and to all the others. So try not and worry to much. For me Remicade in conjuction with Azothipaprine works. Feel good 90% of the time.

Hope this helps. Let me know if you start anything I have been on, me or someone on the forum can help with questions!
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12-16-2015, 04:00 PM   #5
Lizzie
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Thanks for this. I think they will decide what to put me on once they find out whether it is still UC or actually Crohns (my dad had Crohns so I live in fear of this). As Christmas is coming up I suspect it will be several weeks before I find out what the new medication will be. I'm glad you are able to be positive about it, the thought of these horrible drugs can be quite depressing.
12-16-2015, 08:20 PM   #6
Lady Organic
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It could be a trial of sulfasalazine. (different than mesalamine) : http://www.crohnsforum.com/wiki/Sulfasalazine

It could be suppositories/foam/enemas either of 5-ASA (mesalamine) or cortisone or a combo of both if disease doesnt go further up than sigmoid.

it could be cortisone pills

it could be immuno-suppressants.

it could be Biologics.

this is the bottom-up approach in treating UC.

good luck and let us know whats your next step.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
12-17-2015, 08:53 PM   #7
polgara59
 
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Well, I saw my GI today. I have Pentasa suppositories and enemas to try for the next 2 - 3 weeks. If that doesn't get things under control, then I have a prescription for Prednisone, starting at 30 mg daily and dropping by 5 mg each week until I'm done. He said if that doesn't work, then we're looking at biologics.

I have a lab req full of tests -- both blood and stool, and if things don't improve as they should, he wants to see me again pdq.

Here's hoping the suppositories work like they should!
12-17-2015, 10:17 PM   #8
Lady Organic
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im hoping they will work too! im currently using them too, but I need stronger meds along with them unfortunately. let us know how it goes. good luck!
12-18-2015, 12:02 AM   #9
Lady Organic
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Early symptomatic response and mucosal healing with mesalazine rectal suspension therapy in active distal ulcerative colitis--additional results from two controlled studies.:
http://www.ncbi.nlm.nih.gov/pubmed/?...+suspension+UC
12-18-2015, 10:54 AM   #10
Ian_H
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Thanks for this. I think they will decide what to put me on once they find out whether it is still UC or actually Crohns (my dad had Crohns so I live in fear of this). As Christmas is coming up I suspect it will be several weeks before I find out what the new medication will be. I'm glad you are able to be positive about it, the thought of these horrible drugs can be quite depressing.
I struggled with the fear and worry of Remicade and azathioprine and its side effects, but eventually you lose the fear and it becomes a normal routine in your life. For me a mentally therapeutic one. I hope it all works out and let me know if you have any questions!
12-22-2015, 04:18 PM   #11
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If pentasa stop working I would imagine you will be changed to a stronger medication and your symptoms will be treated while the new meds are starting to work. Its literally trial and error for us guys. Frustrating
12-22-2015, 11:42 PM   #12
polgara59
 
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I've been on the suppositories now since Thursday night. Tummy still rumbles and was flat out obnoxious today. Some blood also present today.

I went for bloodwork yesterday and have a lovely process for collecting some new stool samples for analysis, but I'm about to go to my daughter's for Christmas so that won't be happening until we get back home.

Meh...
12-28-2015, 02:21 PM   #13
Cross-stitch gal
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How are you doing now? I hope that if you haven't gotten your blood tests by now, they should come within a day or two. Looking forward to hearing results...
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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, Canasa Suppositories (when needed) 1000mg 1xday

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
01-06-2016, 12:11 AM   #14
polgara59
 
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I seem to be better. Bleeding has stopped, and BMs are mostly 'normal.' Doc was off over the holidays so he would have only gotten the results yesterday. I haven't been able to get the 'proper' stool sample, but that's a positive sign, IMO, because that means nothing's been bad enough that I've been able to get that type of sample.

I'll give it until the end of the week before I send an email to the doc to let him know I seem to be over this flare.

Thanks for asking!
01-06-2016, 08:26 PM   #15
Lady Organic
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IM glad you are better.

I dont understand what you mean by proper stool for test and that you cant perform it? Is is the fecal calprotectine?
01-08-2016, 08:19 PM   #16
polgara59
 
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I'm not sure which one it is, but they want basically a very watery sample. I haven't had the testing materials with me any time I've that type of BM in the past couple weeks, so I haven't been able to give the sample.

I may have messed myself up though -- the bleeding had stopped so I got slack with the Pentasa suppositories. Well, the bleeding has been back for the past few days and isn't getting any better even though I resumed the suppositories. Smack myself upside the head...

I'll behave and use the Pentasa properly for the next couple weeks and see what happens.
01-08-2016, 08:37 PM   #17
Lady Organic
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You may have a chance to keep your UC in remissison with suppositaries only so i would really encourage you to continue the regimen and not stop it. Suppositaries and enemas are not fun I know... But they are overall MUCH better than any other drugs! I wish I can only take suppositaries one day.

I have never heard of the watery test you are talking about.

Inquire about Fecal calprotectine (stool-whatever consistency-test) to your doctor. This is the test that easily monitors inflammation in the colon.
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