My son (currently 26) was diagnosed in 2016 with PSC and Crohn’s. He had absolutely no PSC symptoms (never has had any symptoms to this day). He started Firvanq brand Vanco and has been taking 1500 mg/day. Almost immediately he responded with lower enzymes and normalized within 2 months. A follow up MRI taken Jan 2021 showed no change/slight improvement.
Over the course of his Vanco treatment, his enzymes were stable. An occasional bump up slightly over normal, but then back down. His GGT has never normalized.
This week, the results of his latest blood work showed dramatic increases in AST, AlkP, ALT to above normal levels. His GGT is up over 1000! Bilerubin, CA19-9 and AFP are normal. He feels perfectly fine.
Anyone taking Vanco with good success ever experience this?
Could it not be a flare up of cholangitis?
I am not on Vanco but usually I am not bad but sludge does build up occasionally, resulting in pain and high liver numbers. It is just the unpredictable nature of PSC.
Just thought it might not be the meds just PSC.
Thanks for the response Birdy. At this point, the bloodwork shows spikes, but my son has absolutely no symptoms (he never has). He feels great.
His doctor wants him to stop the Vancomycin and start prednisone. I’m guessing he thinks there is an auto immune issue here. my son did get the Moderna booster early January.
Since I am communicating with the doctor via email, its kind of hard to get a complete understanding of the thought process. As of now, its stop Vanco, take prednisone, get MRI and repeat bloodwork in about 1 week.
Jace,
Is he going to taper down on the Vanco over time? I’d be concerned about a cold-turkey stop of the vanco. I’d certainly consult with his hepatologist for clarity on that.
Mark
He wants it stopped immediately and have him start the pred. I am not aware that Vanco needs to be tapered down. Steroids? Yes.
The exact quote: “STOP the vancomycin now”
He is a transplant heptologist in NY and has prescribed Vanco for a few different members of the site. My guess is that he wants to deal with a possible auto immune issue. We can go back to Vanco when it resolves (IMO)
Maybe it’s not necessary. I believe they do it with CDiff. I did find this online. Just wondering. Certainly do what the doctor says.
Vancomycin taper regimens are commonly used for the treatment of recurrent Clostridium difficile infections. One rationale for tapering and pulsing of the dose at the end of therapy is to reduce the selective pressure of vancomycin on the indigenous intestinal microbiota.
When did your son start the vancomycin? Long term use, the titrating down slowly sounds warranted here. Short term use, say for 2 mo, a taper may not be necessary.
He’s taken it since 2017. Doctor said to stop immediately so we did. He’s highly regarded transplant heptologist.
Hi Jace, My daughter experienced this when she was then diagnosed with Epstein Barr (mono). She normalized after the virus settled. Did he miss doses? Is he still on Firvanq? I would only change one variable at a time and would not stop OV until you better understand what is going on. Options to try: increase dose eg to 2000/day, change brand to Lupin or ANI capsules but open them prior to ingesting.
Many highly regarded transplant surgeons do not understand oral vancomycin therapy. I would advise consulting with the Stanford doctors who are experts with OV. I can refer you if you would like.
I gotta go with what the doctor says to do. He thinks, I believe, that the Covid booster amped up his immune system. He’s taking steroids for now
Doug
Our heptologist is well versed in Vancomycin and has prescribed for a few people on this website. It is not advisable to take Vanco and Prednisone at the same time. My son does not have any PSC or Crohn’s symptoms. He is likely having an auto immune reaction, most likely from the Covid booster and his labs have skyrocketed since the shot, even though he was taking Vanco religiously.
we have an MRI scheduled for tomorrow and a follow up bloodwork next week.
That said, I would appreciate a Stanford contact. The last Vanco dose he took was Friday night. He started the steroids on Monday (20mg/day).
Hi Jace! I’m sorry to hear that your son is suffering. I’d just like to add that it’s safe to take both vancomycin and prednisone at once (there’s no interaction between these drugs).
I appreciate it. However, I feel like I need to follow his doctor’s orders.
I would not taper Vanco. That is crazy if this is due to the Booster. We have decided not to get our children vaccinated for COVID (including our 6-year old with PSC) and it looks like that was the right call. He got COVID in January, as we all did. He got over it with no issues; fairly mild symptoms.
Well, too late. We stopped Vanco and started Prednisone. MRI showed no change from last MRI 2 years ago. Latest bloodwork (after 1 week of steroids) showed significant improvement in all markers. Once the steroid regimen is finished, we will be back on Vanco. Our heptologist has been prescribing Vanco for PSC since 2016. I have complete confidence in him.