We will be starting on Firvaq solution 5ml (25mg/ml) 4 times a days. Effectively 125mg X 4 = 500mg per day.
Please share your experience with Firvanq solution and the dosage.
Thanks
Great. If you donât normalize in two months then ask for dose escalation to 250x4 and again then to 500 x 3. Get labs every month and keep a log.
My son was diagnosed in August 2016 and started Firvaq liquid in October 2017. 1500mg/day. His levels normalized by November 2017. they have pretty much stayed at normal levels since.
Good luck.
Thanks jace0221, Thanks Cactusgirl for the response.
Firvanq solution is denied to be covered by insurance (BCBS). We will have to buy out of pocket. Cost comes to $330 for the 500mg.
It seems we should start with 1500mg or should we start with 500mg and then based on result we will go to 1500mg in steps.
Does the cost comes to ~$1000 for 1500mg.
Thanks
Hi Jace0221
Is your son off Firvanq now or he is still continuing the medicine. If still continuing then could you reduce the dosage over time.
I am very grateful for your response as it has given a lot of positivism and hope to us.
Did you also had any physical exams like fibroscan, MRI or biopsy post the firvanq.
Regards
He remains on 1500 mg/day. There have been a few times when he has been sloppy about taking the med 3x/day and then his blood tests creep up, so he is, for now not a candidate for reducing. One thing I can tell you, once started, assuming it works, you canât stop taking completely. Within 2 months all the markers will be back up. It doesnât cure anything, but it seems to stop the progression and sometimes reverse the damage.
My son never had any symptoms so we caught it early. He had MRI and liver biopsy before starting Vancomycin, and it showed mild/moderate damage. His last MRI showed no progression, but no improvement.
A bit over a week ago, I switched from ANI to Firvanq. Iâd been taking ANI for three years but my liver enzymes began inching back up and the rumor is ANI is no longer what it once was. I got very bad diarrhea initially and Dr. Lindor told me to stop for a few days and start slowly again. This has been successful. (It was very odd as I didnât have diarrhea when I first began Cutis Pharma, nor, ANI.) My Humana insurance covered half of the cost the first month but sent a letter saying it was not in their formulary. My local liver specialist is writing them a letter. If my pharmaceutical insurance does not cover Firvanq, it will cost me about $1,000. a month for 1,500 mg a day. This is too much. So if I canât get it covered, Iâm not sure what I will do. Go back to ANI or have it formulated by the hospital where my liver specialist works, most likely, although they told me they cannot guarantee each month will be the same.
We are denied again by our insurance for Firvanq and asked to start with generic vancomycin. Is it possible to get covered by insurance. $1000/month for years is very expensive.
Please suggest if there is a procedure to get it covered by medical insurance.
Is insurance denying because they consider Firvanq a compound or are they denying because vanco for PSC is an experimental treatment? If the former, try to source Ani pills. If the latter, shop around at compounding pharmacies to see who can get you the best price on IV vanco compounded for oral use. This should be substantially under $1k/month.
Some people have found success with insurance appeals while others get the runaround. In either case it is likely to take some time.
Hi Susan! Sorry to hear that! Have you tried using a GoodRx coupon? Your dose should cost $650-700 a month (LINK). Itâs not great, but itâs a bit cheaper atleast. 
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Insurance has denied as we have not tried any other treatment plan. We have tried Ursodiol few times but she is severe allergic to it. Insurance suggested to start with generic Vancomycin first.
That is an interesting response from insurance as there is currently no approved on-label treatment for PSC. They are suggesting you try a different experimental treatment in lieu of another experimental treatment? A note from your doctor may help if this is their position. Will they cover generic vancomycin? Ani âauthorized genericâ pills are generics as are any liquid IV compound.
I havenât. Thank you so much!
On the discussion of insurance coverage for Vancomycin, all may be aware of my âloopholeâ but I thought it worth repeating. Note also I am not in the USA and my insurance situation is very different in many ways. But the following may be worth exploration if it not already considered. I take Vancomycin in the Intravenous form (powder in a 500 mg bottle, 3 times day) - this is because IV form is on the Insurance âFormularyâ as a covered drug (no other Vancomycin form is). The IV form, can be taken orally for C-diff (its the only exception to IV stated on the actual literature in the Vanco box)- and I imagine the presumption by the insurer is that means if someone is prescribed it, it is for a short course only for C-Diff. Someone taking an IV drug in an oral administration and long term (for PSC) was not considered in that inclusion on the coverage âFormularyâ (my assumption). I have asked the insurance company if they would simply cover the Vanco pills, or Firvanq, or compounded which would all be much (much) cheaper for them, but they wonât. But they continue to cover the IV form (crossed fingers). So, any individual should search out their insurance companies âFormularyâ search Vancomycin, find what forms are covered by them and talk to your Doctor about its equivalence for oral use, and good luck.
RJM
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Mayo clinics (in Arizona, Minnesota, Florida) have just started Phase2 and 3 clinical trial for Firvanq Vancomycin.
This study received funding from FDA OOPD so I wonder if any chance of gaining FDA approval if successful results.
Hello,
My child has been using a generic liquid compounded Vancomycin in Canada for close to 7 years, since the age of 7. We were fortunate to have the Hospital for Sick Children agree to prescribe Dr. Coxâs Vanco approach to treat their PSC without first starting with prednisone. Within 6 weeks all liver markers normalized and have stayed normal at our yearly MRI, Fibroscan and liver blood marker check ups.
Iâm trying to plan for the future when my companyâs private benefits plan wonât cover the cost of my childâs Vanco which is $3,000 per month for 350MG 14ML 3X daily here in Canada.
By any chance is there anyone on this site who can provide guidance of how a Canadian can procure a 350Mg or even a 500MG or 1,000 MG monthly dosage of Vanco in Canada at a lower cost? Iâm worried that once my child significantly surpasses 50Kgs they will need a larger and more expensive dosage.
Itâs not clear to me if Canadian citizens are permitted to procure Vanco from the US or India which seem to have significantly lower Vanco costs. If anyone has done this research or can direct me to a how this could be done I would really appreciate it.
@2014GDP Iâm glad to see your question here, and I hope you can get some clarification soon.
Does it really cost $3000 per month for 1 gram per day? Are there any coupons in Canada (like GoodRx in the US)? If not, you could just visit a US doctor, get a US prescription and pick it up at a US pharmacy. I travel from Sweden every 3 months to pick up vanco in the US. 
FYI, iâs about $400 per month for 1 gram (both Firvanq and ANI liquid vanco) with GoodRx coupon in the US.
Thank you Haley for your words of encouragement and thanks Andreas for visibility on the cost of Vanco in the US. Yes it does cost that much for a one months supply in compounded liquid form here in Canada. I was told capsule form would be even more expensive.
if youâre ok sharing how did you go about getting a US doctor to prescribe the Vanco? Would I bring my Canadian specialists prescription to a US doctor and simply ask them to write an equivalent US prescription?
If there are any Canadians who are already doing this if you could provide guidance on any Buffalo or Niagara Falls NY doctors that can help my family.
Itâs not clear to me if Canada permits prescriptions for personal use being imported in and googling it Iâm unable to locate any info on the matter.
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To get a US prescription youâll have to go to a hepatologist who believes in vanco (and pay them money of course hehe). I go to the Mayo Clinic, but there are a bunch of people on this forum who go to other places, such as Stanford or New York Weill Cornell. You can always bring medications home as long as you physically bring it (you canât send it through mail).