Sorry to bother everyone again. I finally got a month’s worth of already mixed Cutis Pharma liquid today from a local pharmacy. I cannot start it until next Monday as I am performing with my chorus this weekend and don’t want to risk having a reaction (diarrhea, or), on stage in the middle of the shows. However, it says on the bottles and instructions it is only good for 30 days. Does anyone know if there is a leeway with this or is it thirty days once mixed and not a day longer? Thanks so much. (PS It cost $426. so not thrilled about losing four days of this med but I will if I am advised so by all of you experienced with Cutis Pharma liquid compounded VO.)
Should I continue taking probiotics (VSL#3), with VO?
I foolishly got my prescription refilled for a month of VSL #3 a couple days ago.
Roughly 94% of the vancomycin concentration is maintained at 75 days when stored in the fridge (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2999368/). Don’t stress about a couple extra days.
I imagine most probiotics wouldn’t survive a broad spectrum antibiotic like vanco.
jtb
Thank you thank you thank you. You are incredible.
As an update, my son started Vanco October 8th (liquid Cutis brand). Since he was away at college, there was no opportunity to see the dentist. But, he’s now finished college and I did notice some staining on his teeth when he got home. But, a trip to the dentist and his teeth are movie star white after a normal cleaning.
How do you get the Vanco? Does your Hepa prescribe it or is it your PCP? I asked my Hepa and he gave me a -ve response. I wish i could contact a doc who could help me out, i am prepared to fly to meet the doc and get my prescription. Could someone please help me. I live in Illinois.
Mike,
My son’s hept prescribed. Originally, he wasn’t enthusiastic about doing it, but I forwarded as much of the research I could find (including cut and paste some of the stories from these forums). Don’t assume your hept is knowledgeble about Vanco results. Send him/her the information about Dr. Cox and Stanford, the trials in Iran, etc…
Ask him to give you a 6 month trial to see if there are any results.
Mike, I did the same thing as Jace. Sent all the articles last summer, and asked my hepatologist. First he said no, he wanted to wait on publication of Cox study. When we all learned the Cox study publication of findings had been held up until next summer, I implored him again, a few months later, and he said yes. He was aware of the older studies as well as ongoing, and agreed so he’s started me on same dose.
Short update: I’ve been taking OV (Cutispharma liquid), for five days now. I am noting a marked positive difference in the quality of my stools and my digestion. Aside from this, I’ve no symptoms negative or positive, and no felt sensations. I’ve continued to take my probiotics but two hours away from when I dose with VO.
Great to hear.
Can you clarify again what is your exact dosage in plain English? I have not started Vanco yet, and some of the acronyms and measurements etc are not clear to me.
Is it this?
500mg three times a day?
How do you measure 500mg of liquid? Did the pharmacist prepare something specifically or did you prepare yourself?
Maybe we should have a separate thread for Vanco dosage…Now we have so many different discussion threads.
Ted,
Yes, everything you said is correct.
Of all places, I am getting the Cutis Pharma VO at my local Walmart pharmacy. It is $426. a month for 1,500 mg a day. They mix it for you. But, although the pharmacy does this (takes the bottles of liquid and the bottles of powder and mixes them together), I’m thinking there is no reason why patients cannot take the powder and liquid provided and mix them together themselves for much less money (buy it without going through a pharmacy), although I’m not sure Cutis does this (send directly to patients). Yes, they provide something used to measure the exact correct dose which is purchasable at any pharmacy.
Pharmaceutical insurance does not covered compounded medications, so it all entirely out of pocket. My Humana insurance was only going to cover 75% for the pills which would have ended up costing me twice as much as Cutis Pharma liquid even though covered.
Ted,
My son is taking 1500 mg/day (500x3). That equals 20 mL. At Walgreens, the pharmacist gave me a plastic “spoon” that has measurements up to 10 mL, so my son pours up to the 10 mL spot, takes it, then does it again.
The mg to ml conversion depends on how the pharmacist mixes the vanco powder with the liquid that is usually water or a sweetening agent and a suspension agent. When the resulting bottle is shaken, the vanco should be evenly dispersed/suspended in the liquid. The pharmacist will write on the bottle the mg to ml conversion.
Yes, jtb, as I am taking three (3) 10ml doses a day which equal 1,500.
Does anyone know how long it takes for one to feel better taking VO? Assuming it is working? I’ve read accounts of people feeling better in the first weeks and wonder if this is the norm? (I began feeling very sick again this weekend, my usual sick, the sick that disables me. I sang with my chorus in a show to a packed house and only remained standing through will. I was so sick…)
Hi Susan. My daughter was on and off sick in the first month or so of Vanco (her UC was acting up, pain in the RUQ, nauseous, tired). Then she stabilized. When did you start Vanco? Did you have your bloods taken after the Vanco? Please do not overthink it, give it a little bit of time and listen to your body. Best wishes. My heart is with you.
DB1,
Thank you so so so much. This is very reassuring. I only began it nine days ago.
I had my blood work done today (no results yet), and will have it again in a couple weeks. How often do you recommend? I’ve been sick for so long with this disease, all of my adult life. I was diagnosed via liver biopsy in stage one in 1991 but my liver enzymes had been elevated, and I’d felt horrible, for many years previous.
Bless your compassionate heart.
I am telling my doctors (liver and gastro), how to proceed through this attempt with VO and without this great group, I would not be able to do any of what I am.
Our consultant scheduled the bloods as follows:
- once per month for the first 6 months
- every two months for the following 2 years
- currently, every 3 months
Did you get your blood results?
DB1,
Dr. called this morning. Alkaline Phosphatase went up fro 157 to 209 otherwise no changes. Can this happen?Vancomycin blood test showed “no discernible Vancomycin” in my blood. I’ll repeat then in three weeks. Thanks so.
When my daughter started Vanco, her bloods were tested after 5 weeks (as it happened that the consultant was in holiday at that time) and then he scheduled them once per month. After her first 5 weeks of Vanco treatment the GGT normalized (Note in kids they keep track of the GGT rather than the AlkPhos, as AlkPhos is naturally elevated in kids due to bone growth) .
We kept a chart with her treatment regime and the corresponding LFTs before and after Vanco. Please see attached, it might be of help (chart captures December 2013 when diagnosed - pre Vanco and June 2014 until 2015 - when on Vanco).
PS. My daughter is 17yrs old now (was diagnosed when she was 13yrs old), her AlkPhos normalized in the meantime. Al the best wishes.
13yrs old child PSC UC LFTs before and after Vanco 2013 2015.pdf (152.0 KB)
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