how many of you are on Sulfasalazine? I hate it

 Hello everyone.

How many of you take sulfasalazine for your CD ?I was prescribed this med 13 years ago, before we had to pack up and scoot . My GI back home had prescribed it and it did the trick, somewhat. When we came to live here and finally were able to get a family DR. she just continued with the same med....although I've had partial blockages, and my CD has flared quite a few times.I end up going on a liquid diet for a week or two and by the time I'm in to see the DR. , I'm usually doing better. Well, lately I haven't been taking it very well.....it gives me horrible headaches that never seem to go away....and a lot of nausea.(this has been the case all the way along, but I am just fed up with the headaches etc... if I take the meds , I have headaches and generally feel crappy.... if I don't.... I get "crappy") I had a very serious bleed, 20 times a day times 3 days at least.about 3 wks ago...saw my pcp...told me to go a liquid diet again...and continue taking the sulfa.... ( I WAS taking the sulfa when I had the bleed...) She did send me to see my GI immediately....so far he's done a sigmoidoscopy, an endoscopy and nothing has showed up. Thursday I go for my colonoscopy ....the first one in almost 14 years. Depending on what he finds, I would like to ask him to prescribe something else. Since the bleed I have been having very thin pencil like stools, or little clumps that look like tiny bunches of tiny grapes. I really don't know what's happening...but I'm anxious to find out. I'm having so much cramping but when I go to the washroom nothing much happens.... I even have trouble peeing....it seems to stop and start... I really have to push to finish my pee.

For those of you taking sulfasalizine, what has been your experience? God bless those of you who are taking the time to read and respond to this post.

Love and prayers to all. '

Mary

This is the only CD med I'm on right now (not flaring at the moment). I was first on this in '82 for about 2 years after initial diagnosis and was taken off when my symptons stopped and I had my dx taken away. When I started another flare about 5 years ago, I was put on Asacol which did no good, then switched to this med again, progressed to Remicade which I had to stop. So now I'm only on this and nexium. I don't have any issues with head aches unless I'm not drinking enough water. Have you asked to be put on any others meds? This drug isn't working well for you right now and there are so many others available, maybe one of them would work better. Take Care.

MC,
I was on Sulfasalazine for about 20+ years then my GI specialist(best in my area), just recently told me
I had to get off of it because it was too dangerous. Said recent studies
show that it can cause kidney failure especially after long term use.
So I researched more about side effects and I could not believe the long list of bad side effects (direct effects) that it can cause. If you google “Sulfasalazine Side Effects”, I’m sure you’ll see
the same results. I asked my Dr. if there is anything else I can take, he said that
basically all the other meds for Crohn’s can cause the same side effects. So
I’m seeking out other treatments. My Dr. let me stay on the Sulfasalazine in a very
minute amount just for the time being to try and get me back into remission. I’ve stopped
the Sulfa...completely now and trying other more natural treatments.
So far the Malic Acid (1 tab a day) is working ok and I’ve been
using the Aloe Vera Juice (5-6oz.2-3 X a day). Doing pretty well with these, but I have noticed that
my energy level is very low and I’m feeling a bit dizzy at times. I did notice that my urine stream
was better after getting off the Sulfa... Hope this helps, thanks to all for the great info.

pixels

Post Edited (Pixels) : 8/2/2008 3:28:05 PM (GMT-6)

I was first prescribed sulfasalazine for my CD and arthritis problems. Thirty minutes following each dose, I would begin vomiting. So when I complained to my mother, she informed me that must be the antibiotic I was allergic to and that landed me in the hospital when I was 5 - I am in my 5th decade now - LOL...
Turns out I am allergic to sulfa also...
Sorry you are having problems, Marie-Claire. I think it time you ask for a new medication that hopefully will get your symptoms under control with fewer side effects.