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Crohn's Disease Forum » Treatment » Thinking of stopping all my Crohns meds


03-22-2014, 07:24 PM   #1
millerkat1
 
Join Date: Sep 2013
Thinking of stopping all my Crohns meds

I am on Penasa 500mg 2 tabs 4 times a day.
Folic acid 1 mg a day
Prednisone 20 mg a day.
Iron 2 times a day
Prenatal


I still feel like crap everyday with lower abd pain and blood in stool. Whats the point of taking the meds if they don't seem to help
03-22-2014, 08:30 PM   #2
theOcean
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Please don't stop taking your meds. Consult with your doctor first. Stress the fact that you don't feel that they're helping you, that you need something stronger and that you're not getting better. Stopping is one of the worst things you can do, especially if your illness is active.
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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!
03-22-2014, 08:57 PM   #3
nogutsnoglory
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I'm sorry to hear that you don't feel well. How long have you been on them? It takes time for things to work with any drug. If you have been on them for a while with no difference perhaps your doctor can tweak the dose or try a new med.
03-22-2014, 09:11 PM   #4
millerkat1
 
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Ive been on them since august. The prednisone for the last 3 weeks. The problem is im pregnant. I dont want to keep taking then
03-22-2014, 09:17 PM   #5
theOcean
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Have you spoken to your GI about the fact that you're pregnant?
03-22-2014, 09:30 PM   #6
blackli
 
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Don't stop taking the prednisone especially. It is very dangerous to stop steroids cold turkey!
03-22-2014, 09:43 PM   #7
CrohnsChicago
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That's a pretty low dose of prednisone for only being on it for 3 weeks since all of this started. It's important to get the bleeding under control to avoid even more complications from Crohn's.

Your Crohn's may be in a state where Pentasa is not strong enough to get things under control. Sit down and talk to your doctor. Ask him questions and make sure you have a good understanding of your situation, what part of your body is affected and what the likelihood is of your condition worsening fast without treatment especially since you are pregnant. Ask about your other medication options, diets you should consider based on your symptoms and other lifestyle changes that might benefit your condition and this risks all of this has on your developing fetus and base your decision on that. If you are not happy with them, consider getting a second opinion.

And yes, stopping prednisone too quick or too early is very dangerous. When you start taking steroids, they take the place of your adrenal glands operating. Being pregnant makes stopping medications suddenly a more risky situation. Your doctor needs to help you wean off of this medication to avoid adrenal crisis which is a life-threatening condition.
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Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

03-23-2014, 02:25 AM   #8
Amaze
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In 2010 I felt like crap and nothing was working. I stopped taking my meds and within 3 weeks I was admitted to the emergency room and spent a couple of days recovering.

Case in point.

Don't stop your meds. Consult your GI promptly. Also, your prednisone dose is low and since you're pregnant stopping meds suddenly is risky
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03-23-2014, 11:52 AM   #9
lbligh
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Sorry you are feeling so bad. You definitely don't want to stop the Prednisone cold turkey, and I believe that Pentasa only works within the gut, so that would not be a factor in your pregnancy. Have you tried any of the dietary options that help many people?
03-23-2014, 12:11 PM   #10
wildbill_52280
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Join Date: Sep 2009
try reducing your lactose and sucrose to reduce diarhea. avoid rice corn and potatoes, these seem to cause me issues with brain fog and constipation. everyone is slightly different though with the foods they react to. much of this advice is derived from the Specific Carbohydrate diet which helps treat digestive disease, its a book called breaking the vicious cycle.

i also use a small bit of an herb called japanese knotweed it has high amounts of resveratrol it supresses some of my symptoms. I only take 1/8th of a pill any higher and you may start to see some side effects.

you should probably stay on your medications though, its very likely they are helping although not enough to suppress all your symptoms.
03-23-2014, 01:42 PM   #11
Erb
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I am on Penasa 500mg 2 tabs 4 times a day.
Folic acid 1 mg a day
Prednisone 20 mg a day.
Iron 2 times a day
Prenatal


I still feel like crap everyday with lower abd pain and blood in stool. Whats the point of taking the meds if they don't seem to help
I thought you'd be on B12 if you were on folic acid. I'm not setting myself up as an expert, but it sounds like the complete folic acid cycle isn't being supported. And where is the fish oil? If someone is trying to help you with vitamins... at least ask them about B12 and fish oil next time you see them.

Also, it's very likely you can't absorb any of that prenatal. Maybe not even the folic acid. Certainly not the iron if it's not with a meal that includes acidic food. And extra iron just feeds bad bacteria.

Why is this person not giving you shots? You need to consult with this person again and see if the regimen is helping your blood levels or not. I'd suspect your body can't absorb the vitamins so you're not improving.

As for the meds, don't make your baby go cold turkey off any meds. Ask about how to do it carefully. Or at least back down 1/2 dose each week until it's gone.
03-23-2014, 07:58 PM   #12
millerkat1
 
Join Date: Sep 2013
my hgb right now is 9.9 and my iron sat % is 8% my gi isn't too concerned with vitamins. the reason im on the folic acid is because pentasa is iron sparing my b12 and folate levels are fine
03-24-2014, 02:32 AM   #13
badbelly
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Pentasa doesn't really work completely for most people, but it does help at least some. I'd talk to your GI about getting on some stronger medications that will be safe for your baby. As other have said, don't stop that pred cold turkey!

Hope you feel better soon.
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Crohn's diagnosis Jan '13.
Current meds: Humira, Modafinil, pain meds as needed
Supps: VSL#3, multivit., d3, omega3, iron, b12
Past meds: LDN, cipro/flagyl, prednisone, pentasa
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