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Recently Diagnosed with UC, Sulfasalazine prescribed looking for feedback/experience with this Rx

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Ulcerative Colitis
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Posted 6/6/2017 10:02 AM (GMT -5)
I have just been diagnosed with UC, which has been plaguing me for 15+ years. Ive dealt with several major flares spread out over this time. I feel great when Im not flaring and have a lot of energy, this far out weighs the amount of time I spend suffering from flares. My GI doc has prescribed me Sulfasalazine (500 mg 3x day) which completely makes me feel like crap during and between flares. Major headaches, blurry vision, and fatigued all the time on it. I cant function on the meds. I talked to my GI doc about it who basically told me to get with the program or he will have to remove my colon. His seriousness scares the hell out of me, but I dont want to take the meds anymore. Id rather deal with flares every so often and enjoy my life in between.

Can anyone share their experience on sulfasalazine, good and bad? Could I be making a big mistake as the doctor suggests?
Posted 6/6/2017 1:54 PM (GMT -5)
Sulfasalazine worked wonders for me for 6 years but now it's not enough.

That said, if you are having side effects, there are other 5-ASA agents that elimnate the sulfa and are said to have less side effects. These would be AsacolHD, Pentasa, Rowasa, Aspiro, etc.

Sulfasalazine is used by GI's first because it's very affordable.
Posted 6/6/2017 2:26 PM (GMT -5)
Sulfasalazine worked for me for 3 months then my body got used to it. My gi said its a starting medicine. Now im going to remicade after 2 other failed drugs.
Posted 6/6/2017 3:31 PM (GMT -5)
Sulfasalazine is an older UC medication that is known to cause more side effects than the newer medications. It sounds like you are experiencing some of those symptoms (headaches is a common one). I would ask your gasteroenteroligist about balsalazide disodium, which is another generic medication that should have less side effects.

Fatigue is one of those UC symptoms that plagues us during flares. It generally improves as we heal.
Posted 6/7/2017 9:24 PM (GMT -5)
I'd say your doc is unreasonable for threatening you with surgery if you don't take sulfasalazine. Many UCers suffer side effects from that med due to its bonded sulfa component. Depending on the extent of your UC inflammation (pancolitis, left-sided, proctosigmoiditis, or proctitis), you could try other newer 5-ASA drugs, such as Asacol (Delzicol), Lialda, Pentasa, Colazal or its generic balsalazide. (Apriso is mainly a remission-maintenance med.) I especially hated sulfasalazine because it made my eyes extra-sensitive to glare. Definitely look into other options for Rx med because not all meds work for every UCer; we need individualized care + follow-ups. Also, be sure to drink plenty of plain water daily when taking a 5-ASA med as they tend to dehydrate oneself! / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/8/2017 6:03 PM (GMT -5)
It worked out for me fine for the first month or two. I became neutropenic probably due to a reaction with the medicine. I've been told the Rx is often given because its cheaper than Lialda, but for the past 70 years its been doing its job. Drink a lot of water.
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