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Crohn's Disease Forum » Your Story » Do I need to switch medication if i'm in remission, but still dont feel well??


09-14-2017, 10:41 AM   #1
jfried3
 
Join Date: May 2017
Location: Baltimore, MD
Do I need to switch medication if i'm in remission, but still dont feel well??

I am in high school and was only diagnosed with Crohn's this year. I had been sick for two years before my diagnosis, so this has been going on for a long time. After my diagnosis, I was put on prednisone and had horrible side effects. Luckily, I was only on them for a few months before they started weaning me off. Then they started me on Pentasa, which did nothing to keep control of Crohn's. Then they put me on a Chemo pill (6-mp). It has worked for a few months, but I also have side effects with that. Nausea, headaches, and hair loss. Along with the side effects from chemo, I still have Crohn's and IBS symptoms. My blood work shows I'm in a delicate remission, but I still feel sick on this medication. I have started to think that I will always not feel well. Should I mess with the slight improvement, or take a chance so I don't feel sick everyday and ask my doctor for other treatment options??
09-14-2017, 11:24 AM   #2
Clash
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The remission you speak of is clinical remission it means blood work has improved and symptoms are improving. There are several levels of remission clinical, endoscopic (scopes look clear), histological (no inflammation at the cellular level upon biopsy). Deep stable remission is the culmination of all 3 along with full mucosal healing.

So even though your blood work looks better it doesn't mean the inflammation that causes symptoms is completely healed. I would discuss these symptoms with your GI so you can determine if the symptoms are related to medicine side effects or inflammation and whether you need to increase your 6mp dose or look at other meds. Also it can take several months for 6mp to reach therapeutic levels.

I would definitely discuss this with your GI.
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Clash
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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
09-14-2017, 12:03 PM   #3
ronroush7
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Agree.
09-21-2017, 01:57 PM   #4
Chase
 
Join Date: Sep 2017
Location: Saskatoon, Saskatchewan

From my experience I would say listen to your gut. I my self suffered from Crohn's for 20 years and my best moments with it were when I listens to my gut! I would eat according to pain and rest when I needed to (despite the judgement from others). I was able to manage my condition better that way then with the cornucopia of drugs that I put in my system. At the end of the day the test you take best reflect what you are going through at the moment the test was taken. And these disease change with the wind. I am not saying don't listen to doctors, they are the ones that save us in our real time of need. I am saying observe your disease and see what makes it tic, then try new things and see which give you better results. I am now symptom free for 2 years and drug free for almost a year on a vegetarian diet and being in complete control of my stress ( which for me is more important then diet).

Good luck

Last edited by Cat-a-Tonic; 09-21-2017 at 03:50 PM.
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Crohn's Disease Forum » Your Story » Do I need to switch medication if i'm in remission, but still dont feel well??
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