The thing is, as I go down in dose, so do my liver enzymes and so does my sense of well being! I’ve been on 1,500 mg for two months. I’m thinking if I go down to 1,000 I’m still sort of playing it safe? I’m aware some people don’t do well lowering the dose but my AK is still high. And of course ANI is wicked expensive. I spent almost $15,000. on it last year. (That is with pharmaceutical insurance.)
Ugh, so hard to know what to do. And the bigwig docs cannot help (i’ve tried), nor can my own doctors.
Much appreciate, Jace and others,
Susan
After rereading this thread and reading Gross above, Instead of going down 500 mg a day, I decided to go down only 250 mg a day for a few weeks and see if this effects my blood work and sense of well being. It’s so hard trying to figure this out. Many thanks.
Friends. I wanted to let you know my liver enzymes are continuing to go lower. Blood work yesterday has AK lower than it’s been in almost thirty years (high 120s).
I’d only gone down 250 mg a day for the last five weeks. 500 morning and night and 250 mid day. I’m considering what to do now. Lower or stay as is.
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That sounds great Susan! I hope you the best! 
Susan,
Great news. I would stay at this dose as long as bloodwork continues to improve.
Jace,
I sent my update to doctors Cox and Lindor. Dr. Cox is out of the country. Dr. Lindor responded:
“I think your plan sounds good. The usual daily dose is between 500 and 1000 mg so three 250 mg doses would be right in this range.” So, I’ve cut back 250mg less a day and will continue this for a month and then get my blood work done again. (That makes me now taking 1,000 mg a day.)
Thanks so for responding PSC friends. My local gastro and my UMass Worcester liver specialist have not responded. Rough doing this alone.
Blessings to all,
Susan
Well, I decided to go down to 1,000 mg/d and my liver enzymes and GGTP went up again. So now I am trying to decide whether to go back up to my “sweet spot” 1,250mg/3xd - where my liver enzymes were lower than in thirty years (although GGTP was still quite high). Or as Dr. Lindor has advised via email, go back up to 1,500 mg/d. I hadn’t responded to higher doses so my theory was to slowly drop my dose. Arugh.
Hi Susan,
Your LFTs went up on 1000mg/day. By how much?
If the difference between the LFTs at 1,250mg/day and LFTs at 1,000mg/day is not significant it would be a good idea to go back to the previous dose (or the ‘sweet spot’), but please stay on that for at least 6 months. If the difference in LFTs between the 1,250mg/day and 1,000mg/day is significant maybe it is a good idea to go back to 1,500mg/day. Also, when you find that one of these doses is working, please stay on that for longer, give some time for the liver to react and adapt. And this takes time.
My daughter was on 1,500mg/day, then we reduced to 1,000mg/day. We found that this dose works quite well, her AlkPhos took a while to come down. It normalized after 8 months on 1,000 mg/day. We kept her on this dose for the past 4 years now, I will be very hesitant to change it.
Good luck and chin up as they say here in IRL:),
All the best,
Daniela
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Dear Daniela,
Thank you so much for responding. I so appreciate this/you.
On 1,000m/d for a month Liver enzymes went up as high as they had been before I began taking Vancomycin 15 months ago. They had been fluctuating all these past months slowly edging down until the 1,250. dose lowered them significantly.
I spent two difficult days this weekend trying to decide how much to go up and finally decided, at least in this case, to follow the instructions of this one doctor. Dr. Lindor must know more than I do and even though I don’t understand why he wants me to go higher than my apparent sweet spot, he does, so I likely should.
And yes, I’ve learned my lesson and will do as you say. If I can get my enzymes down again, I will stay on that dose for six months before considering what to do next. More than anything, because this drug is insanely expensive, I was just trying to spend less on it than the $10,000. out of pocket I spent last year.
Of course, my local doctor is going to need special approval from my pharma insurance company for me to be able to take even one more ANI Vancomycin after this current bottle runs out. So, also on the edge of my seat about that. It would be something like $45,000. without any coverage, obviously an impossibility for anyone but multimillionaires to afford.
In deep appreciation,
Susan
Susan,
Have you looked into getting the Vanco in liquid form> My son takes 1500 mg/day in liquid. The cost (not covered by insurance) is about $600/month. Seems like it would be a savings for you.
I responded. It zipped onto another thread on Vancomycin.
Hi Susan,
I haven’t looked back too much on this thread but thought I could chime in with something I was looking up the other day based on a mention in a Dr. Davies paper - its called Firvanq and its a vancomycin compound kit now FDA approved. Costs are not revolutionary for compound but its a consistent/stable/approved formulation and its around that $600-800 mth mark based on what I could see online. RJM
Thank you!
That is what my son is taking- Firvanq. We get it delivered by a pharmacy with multiple locations.
We deal with the Bronx, NY location.
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