Hi, My 33 yr old son will be requesting Vanco at GI appt next week. We’re looking to request 500mg 3x/day. That seems to be the way to go after reading posts and research articles. He has PSC and mod-severe UC. PSC is early stages, MRCPs look good, only slight elevation of ALP. His UC has never been well managed since hospitalization 2 1/2 yrs ago when he was diagnosed with both diseases. We’re hoping the Vanco takes care of both. He is currently taking Urso, Lialda, Humira, and frequent courses of prednisone 20-30mg qd for a few weeks then taper. He is not well managed on any of this.
My questions…1) Does he ask to go off all the other meds? 2) Are the people having good outcomes only taking Vanco? 3) What should the script read/look like for the IV Vanco to be taken orally? 4) Anyone in the Buffalo, NY area on this site using Vanco or have a GI/Hep team they feel confident in?
Thanks so much to everyone for sharing your experiences and knowledge.
Hi Dsmom,
I hope things go well with the appointment to request Vanco and I hope it will bring some relief to your dear son. Just had one question though, you mentioned he was on 20-30 mg a day of Prednisone then tapering. How slow are they tapering that Prednisone? That’s a pretty high dose which shouldn’t be tapered too quickly in my humble experience. Just don’t want him to have any adverse side effects from that.
I would stay on the Urso. The option of Vanco was not available during my years of PSC and even now we are still learning more and more about it’s usefulness. I’d just be cautious of going off the URSO for it does help thin the bile so it can flow better around those beaded ducts.
Best Wishes,
Mark
Hi Mark,
Thank you so much for the advice! I will be sure he tapers slowly, the prednisone has been a difficult issue with this doctor. She does not respond in a timely manner when he gets worse then ends up putting him on and forgetting about him again. I’m a nurse and Dylan is an athletic trainer so luckily we can watch that and taper safely. Thanks for the great points about the Urso, that makes sense. I can’t thank you enough.
Take Care,
Tracey
Tracey,
My son has been using oral Vanco since 4th quarter 2017. Although he was diagnosed in December 2016 with both PSC and Crohns, at that time he never suffered from any symptoms for either disease. His liver enzymes came back very high as a result of an annual bloodtest.
Vanco has been incredible, and he continues to be symptom free. The heptologist I found in NYC indicated a willingness to prescribe Vanco during our initial visit, but he admittedly slow walked the prescription. I emailed him a bunch of information about Dr. Cox and his experiences, plus a bunch of screen shots from this forum.
I would have your son prepare similar anecdotal information so that the doctor can be educated on this.
As for current medications, the doctor you choose will need to make that decision. Just make sure the doctor indicates during the 1st visit that he is not opposed to trying Vanco.
If your son is willing to make the 5 hour drive into NYC, I can recommend a great doctor.
Thank you so much, this is very helpful. Sorry for delay in acknowledging response. It went to my junk folder which I never really check. Good thing my electric bill didn’t show up yet! I’m actually going to include this in our documentation for MD. My son’s doc is part of University of Buffalo practice so research/teaching practice. I’m hoping she is open to it, but it has been hard to find good providers here. Crazy because my son actually works for the sports medicine dept of UB MD.
If he needs to go to NYC to be well I’m sure he would.
Thanks so much again,
Tracey
Attached are my son’s blood work results, beginning prior to Vanco. The only medication he has taken for PSC is Vanco, so its all a result of that medicine. It starts with pre Vanco blood test on 8/23/17.
Additionally, your son’s doctor can consult with my son’s heptologist if desired.
Brett Fortune, MD | Weill Cornell Medicine
Brett Fortune, MD | Weill Cornell Medicine
(Attachment BLOOD.xlsx is missing)
Tracey- The site won’t let me attach anything, so if you want my spreadsheet, shoot me your private email.
If you convert your spreadsheet to a pdf or jpeg you can paste directly into messsge or upload into message. Be sure and obscure any personal identifying information. Thanks
Mark
Thank you so much! I’m so glad your son is doing well. I can’t even begin to tell you how thankful we are for the info…and the name of an MD that gets it….
Hi,
Just wanted to let you know we couldn’t get the Vanco ordered by GI or PMD…… We are looking at other GI docs including Dr. Fortune. These docs add so much stress and frustration to their patients’ lives. They’re exacerbating symptoms! Thanks again for your help.
I knowDr. Fortune will be receptive, and he’s a great doctor.
Hello,
Can you update me on how your son has been doing since this posting?
Thanks