Thanks, jace. My enzymes were also weird with elevated ALT that would usually match my ALKP. I got poked a few times but they never found any evidence of AIH. I hope your son’s biopsy goes smoothly. Have they already checked for AIH antibodies?
His gastro ran the AIH blood test and it was negative, but this is his heptologist, so we will do whatever he wants.Continue feeling good!
This is very encouraging good news. i wonder that what is dosage you take daily now? do you use powder form or pill? there is no pill form in my country so do you know is there any difference effect between powder and pill?
Thank you in advance.
I take 125mg qid (500mg total) a day. I started at 1500mg / day and recommend others to do the same. Some people are sensitive to dosage amount so it makes sense to start at a higher loading dose to see if it works, then knock this dose down slowly over time. If LFTs go back up at any point, up the dose again and stay there.
Taking IV powder orally is fine - I used the IV powder for a few years with great results.
Another update: I just had a Fibroscan done with a 4.6 result which is normal.
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JTB,Did you only do well on Kabi powder? Thanks so, Susan
Can’t IV Vancomycin be compounded it capsules?
Kayakdave, I’m doing the exact same thing. Looks like I’m here at your post (just joined this forum), a year after you posted this… I see you stopped OV after three months. I’m wondering what your dose was. My liver specialist wants me to take 500 3xs a day, following the dosage in current Dr. Cox trials. I’ve read people sometimes don’t respond to lower doses and even go higher when not responding. Wondering what happened/is happening for you these days.
Hi SusanG, my OV dose was a total of 500/day (four 125 mg of the Ani pharma tablets) during the 3 months I was on it, so it looks like you are taking three times as much as I did. Maybe my liver doc. was being conservative, or doesn’t like the antibiotic approach. Now I am wondering if I shouldn’t have pushed for a higher dose. I hope you have success! Let us know if you don’t mind.
After stopping OV, I started a drug called Fenofibrate & I am apparently seeing progress since I started last spring. I say “apparent” because, other than some early phase trials, the science isn’t there for this drug, so who knows? I do know that with Fenofibrate my Alk. Phos. has dropped from 500 and is staying around 235. I have a fibroscan coming up in June 2018 to see if we can discern any real impact on my liver compared to the scan I had in June 2017.
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I will google Fenofibrate as I’m not familiar with this drug. Has there been success with it in stopping or reversing our disease? I guess from what you are saying above it is too soon to know.
Maybe you could consider asking your doc to put you back on VO at a much higher dose should the fibroscan look much the same? I have heard, however, there is controversy about Fibroscan technology as it relates to our liver disease. For example; my own fibroscan of a couple years ago came back normal (!!) yet my wedge liver “biopsy” (more a chunk of my liver, removed during surgery for something else), showed definite stage 3/4.
Hi Susan. Were the Fibroscan and the liver biopsy done at short time interval (ie same year?) . Thanks. Daniela
http://onlinelibrary.wiley.com/doi/10.1002/cld.319/full
Pls see above link re Fenofibrate and PSC and also a summary of other treatments (and dosages) wrt to PSC.
Hope that helps. Daniela
Thanks so, again, but I cannot get into this link…
Try it now:)
Yes! It works. I’ll read in a few moments…
Compounding pharmacies have told me that they could put the powder into capsules. Thus avoiding difficulty of carrying liquid and the blackening of teeth.
Susan,
The impact on teeth caused by liquid Vanco can be dealt with by seeing your dentist for frequent cleanings.
Thanks Jace, Does anyone know if liquid VO stains composite veneers and/or fillings?
No, the fibroscan was done two years ago. The wedge biopsy about eight years ago! I’m on no allopathic medications (although many alternatives).
Much to my surprise, I found out Walmart about a half hour drive from me can get me the Curtis Pharma liquid Vancomycin!!! This circumvents the issue of it freezing in my rural mail box in winter. The price is a fraction of the ANI pills – $340. a month (without insurance) for 1,500 mg daily, instead of the $800.-1,200. at my local pharmacy after insurance for ANI. This is really really good news. So, it is the way I will proceed. I will deal with the tooth issue one way or the other. Thanks so so so so much everyone who has helped me thus far.
That I don’t know
SusanG
December 23 |
Thanks Jace, Does anyone know if liquid VO stains composite veneers and/or fillings?
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jace0221
December 23 |
Susan, The impact on teeth caused by liquid Vanco can be dealt with by seeing your dentist for frequent cleanings.
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