I am starting Pegasys next week to treat my polycythemia vera. HU was discussed, but not a great choice for me to start on.
My dosage is 90mcg from a 180mcg vial, the remainder is thrown away. At approximately $1,000 a vial I will be flushing $500 down the drain a week! Truly disgusting. Do your specialty pharmacies package in smaller doses or are you having to do the same?
Is this a manufacturer issue or should I be pushing my pharmacy/medical provider to offer a solution to this waste.
Also, I do not have a drug coverage has anyone found an alternative coverage platform? Drug card or other that may cover some of the cost.
Thank you in advance and keep fighting the good fight!
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BadgerPV
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If you're paying cash for these doses that is a huge incentive to not waste. It is known to use multi dosing even if it's not on the Rx instructions, members here do this safely. But you should discuss with Dr before doing so. I have a procedure to keep it safer I posted a while ago, although my Dr assured me it's not necessary.
You won't get any help from the mfg or the specialty pharmacy if my experience holds. So it's between you and Dr.
Both PEG and Besremi contain preservatives: "acetic acid , benzyl alcohol, sodium acetate" These are preservatives even if the box says "no preservatives" as does Bes. It does smell strongly like alcohol when I use it. So my Dr reassured me that the stuff won't go bad over a reasonable time period. Bes is good for a year (unopened).
Also note that Bes is authorized in Euro for two doses per syringe so multi dosing is proven and safely done there. Multi dosing is also known for insulin.
I use the prefilled syringe, I'd guess it is easier with this, but good hand eye coordination is required. Bes does not have a vial option anyway.
Another option you can discuss with Dr is using a longer dose interval. Once per two weeks is not unusual on PEG. This would allow the full 180mcg dose but less frequently. But normally you can't start on this extended schedule.
If you do some day get insurance, you'll want to look to Besremi, since it's approved for PV, the right sort of insurance will pay for it.
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On this MPN voice page they discuss multi dosing, but I think this refers to the Euro/UK applications.
"Single-dose syringe – A syringe containing the exact amount of drug required for one injection.
Multi-dose vial – A glass vial containing multiple doses of interferon liquid. You will be required to draw up a specific amount of fluid into a syringe and administer this dose to yourself.
Multi-dose injection pen – An injection pen containing a cartridge with multiple doses of interferon. The pen is set to inject the required dose each time."
Pegasys use for PV is common but off-label. The FDA approved use is to treat Hepatitis and the 180mcg is the standard dose for that purpose. That is why the doses in the vials and syringes come that way. As EPguy suggests, there are ways to multi-dose but these are NOT manufacturer recommended.
Pegasys would be prohibitively expensive to pay out of pocket. Besremi, which is FDA approved for PV, would be even more so. If you do not have coverage, then there are assistance programs such as the PAN Foundation, Accessia Health, The Assistance Fund, and more. The PAN Foundation did a presentation at the Boston MPN Patient-Caregiver Event and referenced an app that can help to link patients to resources. I have not used this app but it would be worth checking out. fundfinder.panfoundation.org/
Your hematologist can check into the Patient Support program from PharmaEssentia to see if you qualify for financial assistance for besremi. Here is the link to that for your provider. besremihcp.com/patient-supp... .
I see you are in the USA and using 180 mcg vials. For 10+ years scores of USA patients have been using partial doses from each vial and storing the rest for future use. No complications or loss of drug efficacy has been reported to my knowledge. I've been doing it for 6 1/2 years.
Some MPN specialists in the USA approve of the practice and others don't. Those that don't havn't said they are aware of any known problems. Just follow common sense sterile techniques like: a) always using a new needle when drawing out a dose, b) not blowing air into the vial with the syringe c) tape the red lid back on top of the before storing, d) store vial upright. e) Never use Pegasys from a vial if the solution has become cloudy or yellowish. It should always appear crystal clear.
Hi, I also use Peg and didn't like the idea of wastage. The Peter Mac Hospital, Melbourne Australia, showed me how to decanter the vial into smaller doses. I'm really strict with hygiene when doing it. I get 3 doses per vial by using empty new syringes. They go straight back into the fridge until needed. One thing we are lucky with here in Australia is the cost. I pay $40 for 4 vials, which then decanters into a total of 12 doses. Maybe speak to your specialist about trying the same? Good Luck.
gosh that’s good I heard that the cost had decreased dramatically due to patent running out( don’t know correct terminology ) thrilled I reckon that’s why I was allowed to have it.
Hi Badger, my Pegasys is a single dose 90mcg pre-filled syringe. I think it actually contains a tiny amount than 90 mcg although the amount is insignificant . I’m in the UK.
There is no reason for pharmaceutical companies to provide smaller doses, too much €¥$¢£ to be made. Plenty of people decant the larger amount safely in to smaller syringes.
hi Bobbie, yes I do use the same syringe. I make sure the skin is clean first and then just pop the top back on and store it for next time. I’ve never had any problems. I would imagine it wouldn’t be clinically endorsed but it’s such a waste otherwise.
Same. I use the same syringe for two-three injections. I change the needle every time and carefully let of one drop of Peg from the needle after injecting.
That extra drop is also part of my procedure. I also keep some pressure on the plunger as I withdraw and also as I replace the rubber stopper (this is for Bes)
CDC has a guidance on "Repackaging" drugs from a single vial into multiple single use syringes for a single patients' use. So I use four new syringes and draw 45mcg dose into each and store the syringes in the frig for my weekly 45mcg injection.My care team at Texas Oncology set me up with CancerCare.org foundation for help with my co-pay for my Pegasys Rx. They have been around since the 1940's and they get their funding from donations from drug companies and large foundations. You can apply online yourself but your Dr will need to add support documents on your condition. Ask your Dr if they can apply for you. They only help with the Rx co-pay, and I think your income needs to be below 5 times the poverty level to be approved. Best wishes.
This is my hypothesis. The manufacturer has no interest in the use of Pegasys to treat MPNs. So they have no interest in proving that it is safe to use vials more than once. If they allow patients to split vials, they expose themselves to liability and reduce revenue.
Mine are 90 which is smallest available UK . I use 45 & waste 45 but they do not make smaller here. Different pharmaceutical companies make different sizes if sourced . 👍
interesting that it does come in smaller doses than the 180 here in US. I work too hard to throw away $2000 a month and find it troubling that it’s being recommended.
Agreed that it is a shame - I face the same issue as Peg only comes in 180mcg pre-filled syringes here in Israel and I take 90 mcg every 17/18 days. I spoke to my MPN specialist about this and he said it was unfortunate but the manufacturer has no incentive to change (as it is off-label for ET and they get more volume this way as well) - he suggested I not try and save it (although possible) and just it was part of the process....
I also have been using multiple partial doses per vial, getting four 45mcg injections from each vial. I use an alcohol wipe on the top of the vial before and after each injection and protect the top of the vial with the swab pouch, a twist tie and a plastic bag before returning it to the refrigerator. Some people have reactions to higher doses, so doubling the dose and injecting half as often should only be considered after discussion with your doctor. Also, doctors are opening themselves to liability issues if they recommend multiple doses per vial. My doctor's office avoids answering such questions, and I take that as unofficial approval.
We only have 180mcg syringes for Pegasys here in NZ, so people here who pay for it themselves tend to use the syringe multiple times for the correct dose. I dispense the dose, reseal and put a new needle on each week. I get 4 x 45mcg doses from each syringe and have had no problems, it has never gone cloudy or off. My haematologists know and are fine with it.
Hi Badger
I take pre filled syringe 90 every three weeks
I live in Germany here it’s manufactured by Pharma.
hi, I’m in the uk. I’m on 90 mcg (one x 90mcg syringe) every 3 weeks. Started on 45 weekly, then fortnightly, and brought up the wastage with my Haematologist as 50% being thrown away. Even tho it’s “free” at the point of delivery to me in the uk, as a healthcare professional I wasn’t comfortable with it. It’s taken about 3 yrs to settle the dosage to 90 every 3 weeks, meaning a higher dose less frequently. Also impact of side effects important. They have got less over time but still significant. I prefer them only once every 3 weeks too, and get it over with!
Yes. You CAN have a 90 mcg vial. I was doing just the same as you and was horrified at wasting so much of the valuable drug when a friend of mine in New Zealand was unable to have the drug at all due to it being unlicensed in NZ.
I found it difficult to believe that 90 mcg was not available so I called the company and I now receive my prescription in 90 mcg vials which it appeared had been available for years but for some reason my haema AND pharmacist were unaware of the fact. Hope that helps
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