New to Pegasys for ET - advice please!

Hi lourdene,

Are you taking Pegasys? What is your experience so far? Are you starting with low dose, frequency?

Just an update on Hydroxyurea and my headaches. I have been having daily headaches and twice they went to a migraine. I am starting to find it difficult dealing with the headaches and think I possibly might be HU intolerant.

I am out of our home area for a couple months. I will discuss the possibility of Pegasys with my hematologist on our return and also look to get an appointment with an MPN specialist.

Best wishes, Eileen

I brought up the subject of Pegasys when I just saw my hematologist. I live in a suburb of Philadelphia, She said I could not self inject. I would have to come to their office each time. It is a 40 minute ride each way.

Does anyone have to do this? Also, I have Medicare, Blue Cross supplement and a very good drug plan. Will this be covered?

Thanks, Eileen

@eileen11108 according to this article from Mayo Clinic https://www.mayoclinic.org/drugs-supplements/peginterferon-alfa-2a-subcutaneous-route/proper-use/drg-20067318 " You may be taught how to give this medicine at home. "

Maybe @mortysdad @lourdene @treeore can share more information about Pegasys being administered in clinical office setting or by self-injection at home.

Did your hematologist explain why she did not recommend self-injection for you?

Hello, I self-inject at home. I was a little apprehensive at first, but watched a YouTube video. After a couple of weeks it was nothing. No one at the Moffit Cancer Center, where I go, even suggested having it administered by a medical professional.

My health is a bit like that of Lourdene's--65 years old, long time high platelets but diagnosed with ET then PV last year, JAK2 positive, disinclined to do HU. I started with Besremi last spring. The clinic made the mistake, Medicare wise, of injecting me in their clinic. Big bill they ended up eating, after much stress and letter writing on my side. After 6 shots, my HCT and even platelets were a good deal better, but my liver enzymes rose too high. I stopped and was off all summer because of the enormous cost of the drug, even with a plan d Medicare. I applied for financial aide from the company, and after a few months of back and forth challenges, I got the go ahead at least for three months of the stuff. I did my first self injection yesterday, which was OK though stressful. My poor reading vision made seeing the 100 mcg line difficult once the plunger was all the way up there, so I over shot the mark, and probably only got 70 mcg this first time. I hate the fussiness of the whole procedure. Following the instructions, I held the needle upright while adjusting dose and the creepy drug sprayed down all over my hand. I've asked the FDA why the company is allowed to produce only one, BIG size "portion" so that most of it must be wasted each time. Their answer to be was nonsense: we follow our own guidelines and don't care about waste, was the gist of it. The govt SHOULD worry about the expense of that wasted material, but all one can do is write a letter and try to sway the powers that be.

Hi, how much is Pegasus? What are the side effects and criteria to take it? Insurance covers it?
Many ppl say anyone with a blood disorder should see a MPN Specialist, I want to. Do you know anything about this?

Last I heard, Peg was about $1,200 per month. Copays vary widely by insurance co. Call your pharmacy. They can tell you what Peg would cost you if yr doc prescribed it based on yr coverage. I have rec'd very good care from my hematologist at our regional medical center 30 minutes away. I could get a referral to the big university center's MPN experts if I needed to, but I have been well controlled, no clots, and have had the standard bone marrow and genetic tests. So I don't think a consult with an MPN specialist is crucial. But if you have GP who is trying to wing it or an internist who is not doing standard testing and monitoring, I would ask for a consult. Good luck!

Update! I started on Besremi in 2023, being injected in the clinic. I'm on Medicare Traditional in the US. After a few months my liver enzymes went too high as my HCT and platelets improved. (I seem to get fast reactions to this drug.) I went off the drug when I found out the clinic was not supposed to be injecting since Medicare said Besremi should be patient-injected. I had to maneuver politely but firmly to get a $120,000 bill off my shoulders, as I had accepted it understanding Medicare B and G would cover it in the clinic setting. Ultimately, the clinic kindly swallowed the expense, as it was their mistake. All last summer, as my platelets climbed back up to over a million, I worked on getting the manufacturer's financial aide. Savings and investments you can have, but not sizeable regular income. I finally got accepted in the fall, and they paid for the drug through now, then passed it back to my doctor, who passed it on to Onco360. They or one of their connected offices called me to ask more financial questions. Now through them I'm covered for the year by a set of foundations/grants that help with expensive cancer drugs. I think my Plan D would have left me with $3300 due each year. I wish a fairer, more progressive tax system was in place to make universal healthcare an option for all of us here. In the meantime we have to negotiate the minefield (and mindfield!) of money while we endure the vicissitudes of our conditions.

The drug itself I remain very suspicious of, but as I said, my body reacts quickly to its work on the blood. My HCT remains in good zone, and my platelets quickly at first and now more slowly headed back to not far over the top acceptable zone. The doctor says when my levels stabilize for a few months we can consider lessening the 100 mcg dose. I will not go over the 100 mark as my liver was unhappy at 250-300 mcg. I hope to halve the dose or go down to once a month. My quality of life is very uneven with the drug and the PV. Insomnia, stomach disorder, and post nasal drip plague me, and the tiredness, while not stopping basic chores and blessings of life, stops me from pushing to do work that is meaningful and fulfilling but requires more vitality. What to blame for all this is a bit of a mystery. I no longer get visual migraines, but have had one heart pounding episode. (Stress test coming up soon.)

Thanks for your comment. So Pegasus is about $1200 before insurance? Do they accept all insurances? I have BCross Advantage.

I’ll have to call BCross to ask. And my pharmacy.

I’m glad your Hema is doing what he’s supposed to.
I read bone marrow test are usually routine but mine only did genetic blood test and saw JAK2 mutation.
Is that normal? I mean trust me from what I’ve heard of how painful and bad bone marrow tests are I def rather not if don’t have to.

Yeah for me I need to get an MPN on board.
Even if my Hema was good regular Hema Onc don’t specialize in our issue, attend monthly and yearly conferences on it, stay up to date with progress and new meds, or work with many ppl like us.
Seems best chance to do well is MPN. Good luck to you too!

Bone marrow biopsy is helpful in assessing any fibrosis in the bone marrow, which indicates disease progress. (Remember, MPNs are bone marrow diseases at heart.) Provides a baseline against which future progress could be measured.

Some docs don't do BMBs because patients are afraid of them. I have had bee stings that were more painful than the BMB. It took about 10 minutes. They numb as they they go and dope you up with Xanax. However, A lot depends on how skilled the doc is.

Ask the doc's office if you can be put under and if your insurance covers that.