Vancomycin dosage and other medicine?

General
21

Just to share… I began at a high dose and with my various liver doctor’s advice, I have gone down down down to 125mg 3x. My liver enzymes are doing better than ever. But maybe it was a process since I’ve been taking Vanco for almost four years. I am 65, was at stage three, not sure what stage I’m at now. My liver enzymes have never entirely normalized and GGTP remains about three times higher than normal.

After four years my insurance company is denying coverage so I’m scrambling now for a solution. No pun intended. I’ll likely end up procuring IV powder.

Best to everyone.

xo

1 Like
22

Hi Susan! Nice to hear that you’re doing good! FYI, if you just ask your doctor for a liquid vanco prescription, your dose will cost you about $150-200 per month without insurance (which is waaay more manageable than the costs for the pills). :smiley:

23

Hi, Andreas,

I’ve been reading (albeit slowly, as there are hours and hours of readings & I keep getting sidetracked into reading all the very positive studies on Vancomycin over the years, and of course, I myself am clearly a case in point, an adult who had this disease for decades before beginning Vancomycin, UC 75% resolved, PSC symptomatically & blood work much improved), through our site trying to find a way to source Vancomycin now that my pharmaceutical company will no longer cover it. I’ve been taking FIRVANQ for the past few years now - since changing after all the controversy about ANI no longer being reliable, info I got from Dr. Lindor and others - and my pharma covered FIRVANQ. No idea why they’ve suddenly changed course but clearly I’ll be changing my prescription coverage to another company in 2022. My doctor has now appealed to Humana twice with no success.

My liver specialist deserves an award for the time and patience he has shown me over these years with this prescription. (Especially as I’ve only seen him, paid him, ONCE, in person.)

Where can I get liquid Vancomycin for the price you are saying above???

I recall someone here getting FIRVANQ from a pharmacy in NYC, some years ago now, for much less than local pharmacies. But, alas, I cannot find that comment.

So far, CVS would cost $1,000. per prescription. Walmart $800. The hospital pharmacy where my liver specialist works would mix a differently sourced powder each month, for me, for close to $800. They will not sell it to me in IV powder form, only already compounded.

I’d like to source it in IV powder form as from everything I understand, this is more reliable than pill form - i.e. sourcing it through Canadian pharmacies - and I’m taking a few trips this summer where refrigeration will be challenging. And then, as a few folks do here, just mix into water or put into capsules myself.

DOES ANYONE HAVE A SOURCE FOR IV VANCOMYCIN??

Many many thanks.

24

Hi SusanG,

I have a suggestion for one avenue you might try to go down. First of all, I have no source to recommend, I just get my script from my doc (for IV powder), fill it a pharmacy, and send bill to insurance co. But here’s what I do…

See if your health insurance company will cover you if the Vanco is in another product form (i.e. the IV powder). You may have already exhausted this. You have to go to your insurance companies website and search for their “Formulary”. If its not there, demand it from your insurance company. This is the defintion of the Formulary from the Web. .

"What is a formulary in a health insurance plan?

A list of prescription drugs covered by a prescription drug plan or another insurance plan offering prescription drug benefits. Also called a drug list."

Search for Vancomycin on that formulary and see what forms they DO cover. Many do cover a few specific forms/brands - my experience is none are convenient pill forms but IV forms are covered because they assume certain short term use/infections (on label use!). Go over with your doctor to make sure its the same as what you’ve been taking, and get a script for EXACTLY that form (IV 1gm powder) or whatever, right down to the specified manufacturer. In theory, the insurance company MUST cover whats included on the Formulary if its prescribed - they may have been covering you for your current non-formulary form at their descretion but are now using the inexactedness of the correspondence to the formulary specification as an excuse to save themselves some money. Your doc can read the details on the product form that state this IV powder can be used for CDif .

Good Luck!

RJM

25

Thank you RJM!!!

Excellent ideas!

xo

26

Cedra Pharmacy ( Cedra Pharmacy
I pay $216 for 2 weeks of pre mixed liquid for my son.

1 Like
27

Thank you, Jace0221!! I’ll call them.

28

For others trying to get CutisPharma FIRVANQ covered by insurance.

I just spoke with a woman at Azurity Pharma. She said:

"… there is a prior authorization hotline your doctor should call…,

He should ask for a peer to peer review with one of the medical directors at Humana.

He would then be a doctor talking to a doctor."

She thought there was a very good chance they would then cover my FIRVANQ Vancomycin.

This is a third party company, called AnovorRX used to get prior authorizations and circumvent trying to get through to pharma companies (which my doctor has been unable to do).

The number is 844-472-2032

29

Hi Susan! The retail price for one bottle of 15g Firvanq is $260, and you can get it at $220-230 with coupons. If you take 3x 125g per day, this would last you 40 days. You can easily compare the prices in your area on for example GoodRx. :slightly_smiling_face:

https://www.goodrx.com/firvanq?dosage=300ml-of-50mg-ml&form=kit&label_override=Firvanq&quantity=1&sort_type=popularity

(I take the ANI liquid vanco and I pay $220 per 15g bottle at Rite Aid. At Rite Aid, they put in my GoodRx coupon in the system so they automatically charge me the GoodRx price when I pick it up.)

30

O wow, Andreas. I didn’t know they packaged it in 15g bottles. I’ve been getting 7.7g kits all these years.

15g is obviously the way to go.

The FIRVANQ website says not to keep it, once reconstituted, for longer than 14 days. Likely no problem with compounding part of the bottle at a time as I’m guessing the diluent for reconstituting is okay, once opened, for longer than it is when reconstituted.

31

Yeah, one 15g bottle is $100 cheaper than two 7,5g bottles. Just go to the pharmacy with the coupon and it will cost what it says on the website (the pharmacies listed there has to take your coupon).

It says to discard the solution after 14 days but it likely lasts much longer (but obviously they don’t want to be sued).

1 Like
32

Hi Guys,

I just got my doctor to approve me on Vanco. They did it begrudgingly and arbitrarily singed me up to the only dose they know which is for C-diff at 125mg 4x / day.

I am in Canada and received the Jamp-Vancomycin containing "Vancomycin hydrochloride equivalent to 125 mg Vancomycin.

I told them I was going to investigate more on dosage and get back to them about that, but I just took what I could get right off the bat without complaining. So now I have 2 weeks supply at this dose with a number of refills and I suspect I can get my dosage changed at some point in the near future.

Any thoughts / experience on this brand / dose?

Thanks for all the wisdom on here!

33

Sounds like you’ve got your foot in the door for access. The dose you’ve got is low, especially if PSC is more advanced (showing signs/symptoms of any kind in addition to LFT elevation) it might not be enough at the start. The experts on this (Stanford, Mayo, etc.) have evolved their treatment as 1500 per day to start (then down, sometimes up). If you don’t get strong LFT reduction, hit them with the literature - start reading them out load in your appointment, every word - that should wear them down. But seriously real pro’s shouldn’t ignore that literature - but I’m in Canada too and I know the doctors are conservative about this. As for Jamp, thats one of the IV powders that gets insurance coverage in Canada, and I think I took it for a while. Not for long, as my pharmacists have found consistant brand hard to get (its always a mixed bag), I’ve been on 5 or 6 different generic brands over the last 5 years, they’ve all worked since IV stuff tends (we think) to not have the same variability on its PSC effect as oral formulations.