Hi Mark. I take Jakafi. Manufacturer has a option for those with some commercial insurance. The med is expensive, but I don’t pay anything. If approved. Call ACCREDO and ask about options for zero co pay

Additionally, I’ve been on Jakafi and Pegasys. Both were approved by my insurance I had at the time. I don’t recall the copay for the Jakafi, 🤔🤷🏼‍♀️. I was only on it for about two months. I had a high copay for Pegasys but contacted the PAN Foundation and received approval for financial assistance. The assistance was not based on one’s income. Approval was given over the phone. I didn’t pay any money for the Pegasys. Again, this is when I had different insurance than what I have now. I’ve not heard of ACCREDO. I would look into that option. I’m not sure if the PAN Foundation is currently assisting MPN patients.

Hi Mark, a thumbs up to Steve’s comment about the insignificance of your body’s increase in platelets. A trend of three increases is considered a true increase in platelet production. I’ve been told this by a couple hematologists. Steve also gives additional good information. I’ve been diagnosed with ET for 18 years. I started HU less than two months after the first high lab result. My platelets increased from about 600,000 to 950,000 in less than two months. After BMB results I started HU. My highest count over the years was 1.8 m. If my platelets would not have been increasing and stayed below 800,000 I would not have taken any medication. Dr. Ruben Mesa told me that he and his colleagues agree that for some patients a target in the 600,000 is acceptable (depending on co morbidities, age, gene mutation status, side effects of treatment) He is compassionate about weighing a person’s MPN symptoms, medication side effects, and quality of life. My target is a count in the 800,000. I know this would be unacceptable for some. Keep us informed of your next lab results and I wish you the best.

A jump from 568 to 619 is not significant. Platelet count can vary by as much a 100K in a single day due to what is going on in your body. My platelets used to routinely vary between the 500s to 700s, slinking into the 900s when there was something going on. A steady upward climb that is sustained would be more of a concern. Bear in mind that there is not a linear increase in thrombosis risk due to the number of platelets; however, there is an increased risk of hemorrhage at higher levels. For me, this would occur as I was getting closer to the 800s.

The other cytoreductive medication that are an alternative to HU are Pegasys and anagrelide. Anagrelide tends to have more side effects than HU. Pegasys does cost more, but is usually covered by insurance. I did much better on Pegasys than HU. It was more effective and much easier to tolerate.

There are other options that may be harder to access. Besremi and Jakafi are both in clinical trials for ET. Bomedemstat is also in clinical trials. It is possible, but difficult, to get Besremi or Jakafi approved off-label for ET.

HU and PEG are both off-label for ET. HU is much easier to get approved due to its cost (60caps = $25). Pegasys is harder to get approved (4 doses = $4,200). Depending on your insurance plan, you would likely pay a higher copay por PEG than HU but it may be worth the investment. That would be up to you to determine.

Wishing you all the best.

Hi Janet, I have PV and have been on HU for 4 yrs with minimal side effects but my blood counts have been going up and I am considering switching to another medication. Could you tell me what caused you to switch from HU and also Jakafi and Pegasus? Side effects? Ineffective for you? Also do you know if your Allele burden was reduced with the interferons?
Thanks so much in advance,
Joanne 3