Prescription denied • Pegasys 180MCG

[Zeppelin11]

Insurance denied my Hematologists request so I asked him to appeal it. Waiting to hear back. I’m in the U.S. Not giving up yet. For anyone one taking Pegasys, what dosage did you start off with? Is 180MCG a low dose?

[EPguy]

I'm on Besremi but the same concern is there, what is the right dose?

For PEG you will hear from members taking it. But 180 is high esp to start. Most start at 45. At 180 the side effects are more likely and could be more severe. That dose was common when it was used for hepatitis and that may be where you saw it. For MPN unless Dr has a specific reason, you want to start low and increase only as required to get the desired blood response.

[hunter5582]

Pegasys comes in 180mcg doses, which is what is used to treat hepatitis. When used to treat ET or PV, most of us start at 45mcg and titrate up as needed. This does mean wasting a large part of the 180mcg dosing it comes in.

It is not uncommon to get a denial on the first try. Pegasys is expensive an its use for MPNs is off-label. The first level of appeal in US insurance companies is typically a peer-to-peer review. Providing there is evidence in the literature to support the off-label use of the med, this may be enough. If it is not enough, that is not the end of the issue. There will be another level or levels of appeal.

It is important to understand the plan rules for your insurance plan in order to mount an appeal. These may be available on-line or you may need to request them. Once you know the rules, it can inform you about how to write the appeal. Note that patients can file their own appeal if they wish to do so. Most doctor's offices do not have the time to do the type of research into specific insurance plans that is sometimes needed.

I have written my own appeals twice for medications that my doctors could not get approved. This includes authorization for Besremi. Success relies on understanding the plan rules and how the appeal needs to be worded. It also requires persistence and and unwillingness to take no for an answer.

It is also possible in the US to work with a professional Patient Advocate to help with this. Some specialize in dealing with insurance companies.

nahac.com/

aphadvocates.org/#

Wishing you success in authorization for the Pegasys.

[Hopetohelp]

Although in the uk, my peg injections come in 90mcg doses so guess they would be obtainable in the States? Have to throw away the excess. I started on 45mcg, a low dose to get body used to it slowly. On 65 now. Couldn’t tolerate 90mcg well so 180 sounds a huge dose. Hope you succeed in getting peg

[Emmyroos]

I started at 90 mcg/week. I hope your doctor is able to successfully get you an appeal and get coverage.

[monarch5000]

I'm in the USA the MPN specialists that are experienced with dosing start patients at 45 mcg per week (the 0.25 ml mark on a 1.0 ml syringe) Inexperienced hematologists tend to start patients on higher doses which risks causing them to feel horrible the following day(s). The easiest way to gain insurance approval is for your hematologist to write an appeal letter saying you found the side effects of hydroxyurea intolerable (if you've previously tried hydroxyurea); e.g. that it caused severe fatigue. Insurance companies do not recognize and appreciate the potential disease progression slowing and potential fibrosis reversal benefits of any interferon drug, only it's blood clot risk reducing benefits, hence insurers will not buy the argument that a 38 year old like yourself should take it to help prevent progression to myelofibrosis in middle age.

[Threelions]

As has been mentioned, they should be universally available in 90mg . I’m with Professor Harrison’s amazing team at Guys Hospital, London and when I first saw her she said that I should start on 90mg per week and adjust as time goes on according to results. 3+ years later I now take 45mg every 3 weeks. From my experience 180 is very high to start.

[wrench69]

Were you in the military, by chance? If so, you might be able to get it through the VA.

[Zeppelin11 in reply to wrench69]

I'm not. Good to know though for someone else.

[Solyesh]

Good luck on the appeal - half of the battle in the us is with the insurance companies and the only way to win (get the medicine you want/need) is to not be worn down by them - it can be very frustrating at times but hang in there.

I started Peg at 180mcg..as many have stated on the site - that is considered at the very high end of treatment. I can say that it was almost immediately effective with all my blood work within normal range for the first time in a decade...but the fatigue on injection day (and day after) was pretty severe and more importantly, my liver did not like that high of a dose - I eventually had to go off Peg for 6 weeks and re-start at half the dose...after almost a year of trial and error, we have settled on 90 mcg every 17/18 days - keeps all bloods (except the PLTs which are still around 500-550) within range and my liver readings as well...

If we had to do again, my MPN specialist agreed that we would have started on the lowest dose and tittered up (we didn't as that is not necessarily local best practice (live in Israel) and given the HU wasn't working for me we wanted to be aggressive.