Dr. Lindor told me, yesterday, that there is simply no data to know whether I should lower or raise my dose.
His research showed lower doses of Vanco were more effective. The Cox/Stanford protocol showed higher, up to 3,000, but only in children. I’ll watch the link you shared above to confirm this.
So, I decided I’m going to go DOWN to 250 twice a day and redo my blood work in a month. If it’s the same, I’ll go up to 2,000 as when I was taking 1,500 it made no difference.
It’s tragic we are all on our own trying to figure this out; that our medical system is so much about financial profit and not keeping people healthy and alive.
Well, I guess my hepatologist wants to play it safe and start with a lower dosage. He sent me a Rx today for 125 mg of Vanco 4 times a day. So that’s 500 mg a day. We shall see. I’m to get labs in two weeks.
Best wishes with this treatment. My 22 year old son was also given the same prescription you are starting with. His doctor is at Johns Hopkins. I did watch the seminar with Dr. Cox and he did say that using the 500mg three times a day was just a guess as he had nothing to reference. And as stated in the thread of comments, everyone reacts differently to the dose levels. My son is doing great after the first 3 months with normal enzymes. I hope this works for you.
Thanks Zmo. I surely hope so. Recurrent PSC is no fun. Especially knowing how sick I got the first go round before transplant, many thoughts cross ones heart. But my trust is in the Lord and I must rest in Him through it all. Take care.
As you know I am also rPSC (Tx in 2012, recurrence in 2014). I know your worry (I had it too for the same reasons, I shouldn’t be alive from my original PSC). BUT, rPSC is an analogue to nacent, extremely early, original PSC which is NEVER found in original disease because LFTs are not tested for in routine bloodwork, there is no early PSC detection test, and is only diagnosible and differentiable from other more likely liver diseases after tell tale liver damage has taken place. rPSC, on the other hand, is diagnosable/detected very early because of a) the high likelyhood of recurrence (30% or so) and b) the frequent LFTTests that we get post Tx. So - lucky us - we discover recurrance before irreversible liver graft damage. Therefore your low dose may well do the job!. Fingers crossed, and keep me posted please.
RJM, thank you for those words of encouragement tonight. And I am very hopeful that this Vanco regimen will do the job. Maybe I can keep my new liver for the rest of my life. Hopefully I have 40 more years! I’d be 98😊
I will draw your attention to this study, for what its worth. I say that because I tried to get on it years ago and spoke to Dr.Shah directly, but they had decided to address this interest by looking at retrospective data (i.e. not recruiting patients). But I don’t know where they are at with it now, they may be interested in your ‘data’ in which case you, and your hep, could get some free* benefit of Dr. Shamita Shah’s expertise.(*hopefully free - be carefull). Dr Shah worked with Dr. Cox on many of the PSC/Vanco studies. Vancomycin Treatment in Recurrent PSC in Liver Transplant Patients - Full Text View - ClinicalTrials.gov
Thanks, RJM for sending the information on the study. From what I can read in the link you provided, the study has ended. I will keep it in mind though for future reference.
Thank you, Jeff. I’m hopeful the Vanco therapy will prove to be helpful to control the progression. Since I’m in the very earliest of stages I do have hope that this is possible. It’s much different than the first time around, as we really don’t know when we got PSC as LFT labs are not a standard protocol in normal doctor visits unless there’s an issue.
Hi Mark. I’ve been on vanco for my PSC since January 2018. I take 500mg 3x/day (1,500mg total per day). I only take the ANI Pharmaceuticals brand, and I open the capsules by removing the cap before I swallow them. This is believed to help digest the medication effectively.
Vancomycin is very patient-specific for both brand and dose, so you might need to do some trial and error to find the right brand and dose for you. From what I’ve heard from others in the PSC community, many patients seem to do well on ANI and Lupin brands, but brands like Akorn and Alvogen appear to not be as effective.
The “Stanford Protocol” suggests starting at 500 mg 3x/day for patients who weigh more than 30 kg and to increase the dosage until the patient’s symptoms normalize. For children under 18 who weigh less than 30 kg, the Stanford protocol suggests 50 mg/kg/day. The most common dose is 500 mg 3x per day, though others respond better to a higher or lower dose.
You can find lots of info about vanco for PSC on my website, including best practices; tips to access vanco from doctors, insurance, and pharmacies; and personal stories submitted by PSC patients on vanco. https://thecomicalcolon.com/psc-hub/
Jenz,
Thanks for sharing your web site. Very informative. How in the world do you get the capsule apart? I pulled and pulled and that thing will not budge. Thanks
Mark Wilson, Moderator
Primary Sclerosing Cholangitis (PSC) Support Group
PSC 2011, 2022 / Liver Transplant 2015
You’re welcome! I hope you find it helpful! My capsules pull apart pretty easily, but I have heard from others that theirs won’t budge. It might be due to differing brands or different capsule dosages. My individual capsules are 250mg. What dosage are your capsules? I heard from someone taking the 150mg capsules that he couldn’t remove the cap.
Sometimes I come across difficult capsules, so I wash my hands before and this helps me get a better grip. I hope vanco continues to bring you relief!
Jenz,
I finally figured out a trick to open up the Vanco capsules. If I take a pair of scissors and gently squeeze on the tip of the blue part of the capsule it will pop loose at the center. Started doing so today. Thanks again.
Hi Eric,
Good to hear from you again. I started Vanco on 12/16/21. At the time my Alk Phos, ALT & AST had been climbing out of range pretty bad. It took some time but by around the first of February, '22 my labs had normalized and they remain that to this day. I’m on 125 MG of Vanco 4 times a day. I thought you might like to see my labs during this period from around 9/21 to present. These are just a snapshot from my CMP labs. Hope you are doing well.
