Hello again, Does anyone have recommendations for medicine to treat ulcerous colitis (I also have PSC)? Sulfasalazine and Pontasa don’t agree with me an vanco is a bit tricky to get hold of. Any advice appreciated. Thanks, Emma
Hi Emma,
My son (18) was put on a 5-ASA (Mesalamine) when he was diagnosed with mild/moderate UC in April 2020. He seems to tolerate it well and has not had a flare-up since May. He is also on a variety of supplements for the last 8 weeks for the UC and his liver health (PSC). I hope you can find something that works for you. Vicki
Hi there,
My son begain balsalazide disodium 750 mg x 9 per day, and 300 mg 2x a day URSO for his UC and PSC. He takes a maintaince dose of 100mg antibiotic 2x day and we rotate 3 days on 4 off.
I added tumeric w black pepper 1000mg, fish oil 1000 mg, vitamin D 4000mg( he was low here) and VSL #3(4pills X3 per day untill flare is controlled when in a flair. VSL innt covered by insurance and $65 bottle can go fast in a flare.
Seth got sick age 15. He’s 20 now. He has taken these drugs over the years and they work for him. I added the supplaments due to serious research on what is best for UC/PSC, and those need to be taken for a while before they can do their thing.
The biologics they create now are supposed to be much safer than the old steroid therapy’s, Seth only had to be on steroids once thank gosh. No biologics yet. He keeps on a strict diet in a flare, but eats whatever when he’s doing good.
I hope this helps!
Hi Emma. I’ve been on Entyvio infusions for about a year for UC and it’s controlled my Symptoms very well. I just started urso a month ago for persistently high LFTs. No side effects from either.
I’ve heard that Entyvio was studied in PSC but didn’t meet its desired endpoints. My hepatologist out of Mt Sinai still felt it could beneficial in PSC.
Emma, I had colitis in 2006, so I am not familiar with a lot of the current med available for it. The only medication that had any effect was prednisone, and that became a pick your poison thing.
Jeff
Thanks everyone! I’ve done a bit of research and its quite tricky to get my head around the UC side of PSC so your responses are really appreciated. My symptoms are very mild and I’ve decided to give Olsalazine a go based on my specialist’s recommendation. He’s open to prescribing vanco if I request it but I had a bad experience on it and I’m not ready to go down that route again just yet. My specialist is more gastro than hepatologist as we don’t have many people in NZ specialised in this area so this online community continues to be extremely helpful in my PSC journey.
My daughter was not able to take any of the 5-ASA meds, or azathioprine. They all gave her pancreatitis. She has done great on oral vancomycin. Here is our just published paper https://www.tandfonline.com/eprint/N8PXYYWEHJJCPSQM7Q6V/full?target=10.1080/00365521.2020.1787501
I can send you a PDF if you email me directly.