First experiences with Pegasys for Polythycemia Vera

[pnArt]

I've had PV for about 10 years, managing it with phlebotomies and aspirin but I've been eager to try Pegasys and avoid HU. HU is a really old, pharmacokinetically poorly characterised drug which causes DNA damage (ncbi.nlm.nih.gov/pmc/articl..., researchgate.net/publicatio..., etc) whereas some clinical trials suggest that pegylated interferon can reduce the chance of PV from tipping over in AML or MF, and improve overall outcomes. (jhoonline.biomedcentral.com...

The advantage of pegylation is that attaching polyethylene glycol to the interferon slows down the pharmacokinetics, creating a less sharp Tmax so the side effects aren't as severe, and making it stay in the body longer. As you can see in this pharmacokinetic curve ...

semanticscholar.org/paper/P...

(Pegasys is the solid line) ...Tmax occurs somewhere around 50 hours and there's a substantial amount (~50% peak) of Pegasys left after 1 week. Steady-state is 4-5 weeks according to the manufacturer.

I gave myself my first shot at MGH in Boston under supervision using a pre-loaded syringe. They sent me home with 4 - 180 mcg/ml vials, and 4 empty syringes. My dose is 45 mcg so I have to load each syringe with the appropriate amount and inject myself subcutaneously. It's easy and completely painless. I took my third shot today. Here in America insurance only partially covers this so my out-of-pocket for this is $1350/month.

The side effects are interesting. As the pharmacokinetic curve suggests, they seem to max out on day 2, when I feel tired, jittery/restless and a little nauseous, but no vomiting. The wired/jittery stuff seems to hit first and last the longest. Last week I managed to convince myself I wasn't "wired", I was "energised", and I got a lot done the day after the shot! As I said above, steady-state is 4-5 weeks so it's a race until then between ever-rising concentrations of the Pegasys in my blood, and my body getting used to it. Everybody talks about "flu-like" symptoms, which I interpreted to mean body-aches or fever, but so far none of that.

Where I live cannabis products are legal and I've had some success treating the "wired" feeling with CBD and the nausea with CBD/THC combo. My hem/onc also gave me a 5HT-3 antagonist, Ondansetron, for the nausea.

I got my first CBC back today and after 2 - 45mcg doses my counts have gotten much better with my WBC in a normal range for the first time in 3 years, and all the other counts moving in the right direction. Yay!!

[charl17]

I feel the same way you do about hydroxyurea after a bad personal experience with HU and a good experience with Pegasys. But one should not over generalize. I know that people have good experiences with HU and I know some of them. HU is cheap, convenient and faster than Pegasys. I have pmf with a favorable long-term genetic profile. My initial doses of Pegasys were higher than yours and I have had more side effects. Over time the dosage was increased and my side effects have subsided. My blood counts are mostly in the normal range. It took hematocrit the longest to respond - 19 weeks.

By the way, if you have Medicare Part D, the cost will come down as you work your way through the different cost sharing levels. You do not seem anxious about the cost but there are programs to help those who need help with the cost.

[pnArt in reply to charl17]

I know lots of people prefer HU, and also giving yourself a shot squicks out lots of people about Pegasys. So I'm not criticizing anyone else's choice but I have a science background and my concerns about HU are mainly pharmacological/scientific.

I'm in the "donut hole" on Part D, but they reviewed my finances and I don't qualify for any financial assistance. This October when it's time to change your life insurance I'm going to see if I can find a better option on this cuz I imagine I'll be on it forever.

[socrates_8]

Hey pnArt...

Thank you for a well written Post about your current experiences...

Katie, who was also on HU for many years, is also now changing over to soon be starting on Pegasys'...

Garry, also is taking Peg' w/ Ruxolitinib and he might also be of some interest...

Check out the Australian Forum Patient's website - MPN-MATE.COM

mpn-mate.com/forum/viewforu...

Best wishes

Steven

[welshhuw]

Hi pnArt, thank you for sharing your experience and the PK information on Pegasys. Many years ago I worked in clinical research for the company developing Pegasys for the treatment of Hep C, I never dreamed at the time, that years later I would be benefiting from off-label treatment with Pegasys for my ET. I started treatment 4 months ago at a weekly dose of 65mcg, within 4 weeks my platelet count reduced from 1.3M to 390K and continues in the ‘normal’ range. I have been fortunate to have experienced only minor side effects which have diminished with time. I understand that with declining sales of Pegasys due to the development of more effective non-interferon based treatments for Hep C, Pegasys with be discontinued by about 2026. However, I suspect you will be aware of Ropeg (Besremi) the new generation interferon which has recently been approved in the EU for the treatment of PV (ema.europa.eu/en/medicines/... . I believe Besremi is also under current review by FDA for approval in the US. I have not seen any information regarding cost, will be interesting how that pans out. I am very pleased that you have responded well to Pegasys and I wish you all the very best for the future. 😊😊😊