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06-06-2013, 04:43 PM   #1
Jillianne
 
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Sulfasalazine

Anyone try this? side effects? did it work? I just got diagnosed and this is the first medication I am trying!
06-06-2013, 05:13 PM   #2
ccec213
 
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Hey Jillianne,
I may not be the biggest help, but since you had no responses, I thought I'd give you a bump. I tried it and it helped little-to-none, BUT that was awhile ago and I've had Crohn's for nearly 2/3 of my life. In short: we're all made up very differently, and it may TOTALLY work for you! Positive thinking!

It's a great place to start, in terms of not being high on adverse side effects. I don't think I had any real side effects from it. It's a pretty targeted drug. And at least when I took it, it was a beautiful blue color. You know, aesthetics--super important in your drugs.

Welcome to the board and the club (though the latter is a sad welcome, it's a welcome nonetheless.)
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Caitlin/ late 20s/ Crohn's disease since age 10/ failed all Western meds, now forging the self-care wilderness.

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06-06-2013, 05:46 PM   #3
Jillianne
 
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Its mustard yellow now! but that happens to be my FAVORITE color!
06-06-2013, 08:40 PM   #4
upsetmom
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Hi Jillianne

My daughter was put on sulfasalazine when she was first diagnosed. She had no side effects at first but after a few weeks she got diarrhea.The DR said some people can't tolerate the sulfa.

Good luck and l hope it works for you.
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06-07-2013, 07:57 AM   #5
MissD
 
Join Date: May 2011
Location: perth, Western Australia, Australia
Hi Jilliane

I too was given sulfasalazine as a first into after diagnosis and its been great. ISH. Ive been on 3000mg a day and it was suggested to me that 2000mg a day was a more likely dose, but I staunchly held on that I was told 3000mg so Im sticking with 3000mg. I did quite well really I guess, Im still very new after only two years so Im not super sure, but I didnt end up back in hospital in all that time so I figure i was doing ok. I still had quite a bit of pain, but it was bearable, in that I didnt take time off work at all, but I do only work part time, so that might have helped. I also dont take time off work unless Im almost dead, which is not always a good thing!!!

The last six months or so the pain has increased enough for me to start kickin my heels and sayin something isnt quite right, and I was told to up my dosage to 4000mg a day while we look into it. Im in Australia, in the public health system, cos Im poor and cant afford health insurance, so looking into things can take a while, however, Im a patient of the head dude at the hospital, so when I start saying life is lookin pretty crappy he can usually squeeze me in for a scoping within a week.

I originally was diagnosed with crohns in the ascending, the transverse and the sigmoid colon only. My last scoping however was two days ago, and Ive now also got some serious terminal ileum action going on, with some internal hemmorids, nice!!!!! We have yet to discuss what our treatment options are from here, that is happenign next week. I am a bit nervous, Ive only had sulfasalazine, and a few steroids for a while at diagnosis, so Ive been able to stay pretty positive.

Oh, did they tell you that the sulfasalazine makes everything that comes out of you flourescent yellow?? Nah, they didnt tell me either, and the first wee after taking them had me crashing into the door on the way out of the loo after being so blinded. Its also a lot harder to know when your poopy has hit the magic clear yellow thingy they look for when doing the bowel prep for a scope, cos even your poopy can be yellow, so is your sweat, i definitely wish I had known that when wearing a new white shirt to work, and your tears also get a yellowish tinge, I now never cry with my contact lenses in...............
06-07-2013, 12:20 PM   #6
Jillianne
 
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Thanks MissD! I did notice my toxic colored pee lol, i feel pretty good day 1, albeit a little nauseous.
06-07-2013, 03:51 PM   #7
tek254
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I have been on sulfasalazine or almost a year for my AS. It has helped the back pain. I dont know if it has done anything for the Crohns. I take 500mg a day. Tried 1000 but nausea got to bad.
06-07-2013, 06:24 PM   #8
kh216
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Sulfasalazine, or azulfidine , was my very first Crohn's drug. I took it in high school, throughout college and about six months after college. It worked well then, until I had severe problems and had to be hospitalized. I needed surgery and during that surgery, the doctors found a ruptured appendix. I went through a long period of remission. After I developed symptoms, I tried Sulfasalazine again but it no longer worked for me.

My biggest advice is to drink LOTS of water and fluids when taking this medication and yes, you will get used to bright colored urine. I hope it works for you. It did help me for a while.
06-08-2013, 07:27 AM   #9
Jillianne
 
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thanks for all the advice, I took 2 at a time the first day but had no appetite and was nauseous so ive been taking 1 3x a day and thats better nausea-wise but still no appetite.
06-08-2013, 03:03 PM   #10
kh216
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Try not to take it on an empty stomach.
06-20-2013, 10:58 AM   #11
Jillianne
 
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shortly after this post i started getting a migraine and ended up bed ridden for a day, it was a sulfur allergy! I am on Pentasa now, which works great!
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