Hi, I’m curious to know if anyone else is on sulfasalazine for ulcerous colitis while being treated for PSC. I’ve just been put on 2000mg a day along with 1000mg of ursodeoxycholic acid (I know its a bit high but its a long story).
There’s a phase 2 clinical trial to test sulfasalazine for the treatment of PSC - https://clinicaltrials.gov/ct2/show/NCT03561584 but I can’t find much information. Thanks, Emma
Hi Emma,
My daughter was diagnosed with PSC+UC back in 2013 (she was 13yrs old).
She was on Sulfasalazine for 7 months. It did help the UC, but no effect on the PSC, in fact her ALT and GGT increased significantly during the treatment with Sulfasalazine. If it was just a coincidence, that I don’t know. Anecdotally, some journal papers indicate some relationship between Sulfasalazine and hepatic injury. It is an old fashion drug used for UC, which has not been proven to work for PSC (at least not yet). My daughter is on Vanco (only) since 2014 and she is doing extremely well. Her UC resolved completely and PSC reversed form stage 2/3 to stage 0. That was our experience with this drug, some people might have had different outcomes.
Hope that helps,
Daniela
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I was diagnosed with UC when I was 9yo, and PSC not until I was 40. That whole time between, I was on Sulfasalazine, and it helped a lot in controlling the UC. But when they were trying to figure out what had thrown me into liver failure, they took me off the sulfa drug, thinking it might be contributing. I don’t think that was ever conclusive either way, but they never returned me to it when the liver episode cleared.
Thanks Daniella. I stoped the sulfasalzine as it seemed to be causing anxiety. I’ve also noted its potential to cause hepatic injury which sounds like warning bells to me. I’ll have a look to see what other meds PSCers have found helpful to treat the ulercerous colitis. I tried vanco for a month and it didn’t agree with me at all but I’m eager to see what new research comes out about it.
Thanks Bob! Are you taking anything for the UC?
Hi Emma,
When my daughter first started Vanco (500mg, 3x per day) she was quite nauseous and she had stomach cramps. We stopped it for 2 months, then we started it again, gradually this time, ie 250mg, 2x per day for a month, we then increased it to 500mg, 3x per day the following month. In her case, her UC dramatically improved after the second month of Vanco and the ALT and GGT decreased significantly to the upper end of the normal range for these values. She stayed on this dose for almost an year, we then decreased it to 500mg, 2x per day, as per Dr. Cox’s advice. She has been on this dose since then. Normal LFTs, no clinical or histological evidence of UC and no biliary beading (inflammation) as per latest Colonoscopy and MRCP results.
Before Vanco, we tried the SCD diet as well, which worked quite well for UC but not for PSC.
Hope that helps,
Daniela
Hi Daniela, This is helpful, thanks. And such great news for your daughter. I was taken off ursodeoxycholic acid and my ALP/GGT increased significantly. I tried 1000mg per day of vanco for a month and it affected my vision and I felt awful. Not sure if it was the result of coming off urso or just a bad reaction to the vanco. I’m open to trying it again but after the research from Mayo clinic’s medical trial is released (hopefully by the end of 2022) and the medicine is easier to come by. I was fortunate to have it prescribed but it was a pain for the pharmacy as they had to mix the solution from pills. All the best, Emma
Emmaphill, I was on the sulfasalazine, then after they took me off it I was on azathioprine – partly for the UC and partly for the autoimmune hepatitis. It is an immune suppressant. Since then I have had first a partial colectomy, then a full one, with a j-pouch. That was after my colon started showing pre-cancerous changes. Indefinite for dysplasia, then low-grade.
Hi Bob, It sounds like you’ve had a tough journey. Thanks so much sharing. Emma
My son is on Urso and Sulfasalizine. He was diagnosed last year at 7 with UC/PSC/AIH. His numbers have normalized and have been in the normal range for about a year now. He is also symptom free at this time. That combo is working for him now but I can’t say for sure trust it always will.
Hi tmw82,
My son (5 years old) was just diagnosed Friday with PSC/UC and possibly some overlap syndrome with AIH, although the latter is unclear. He was immediately placed on Urso and a steroid. I am researching the scientific literature and will have to research Sulfasalizine. Was wondering if your physician has considered oral vancomycin?
Hello STLBluejay,
Our doctor is not using for our son but we have brought it up multiple times and she has said she is open to it if he stops responding to his current treatment. Get into a good children’s hospital with a Hep department and they will be able to guide. What I have learned about this disease is that everyone is different and your son will need a tailored plan. Adult PSC and pediatric PSC are more and more being explored as completely separate diseases. So you really need to see someone who treats children with PSC.