Is Pegasys controlling your hematocrit?

[jon1972]

Hi folks, first time posting here. If you have PV and are using or have used Pegasys in the past I'd really like to hear how it worked to control your hemoglobin and hematocrit. I've been taking it for a year now and although it has substantially lowered my WBC (almost too low) and platelets, it has not been effective against my HBG and HCT. I'm still needing phlebotomies monthly and my HCT was 51.6 this week which is totally unacceptable. I have been gradually working up to my current dose of 110mcg / week as my body adjusts to side effects. If you have any experience with this, please respond with how long you've been taking Pegasys, whether it was effective in controlling your HBG/HCT, how long it took to become controlled, and what ended up being the minimal effective dose. Thanks in advance! - Jon

[Paul123456]

Peg took about 15 months to control my RBC/HCT, going up to 120 mcg. My WBC dropped after about a month and Platelets after 2 months at 45 mcg.

My WBC, RBC and Platelets now too low and I’m on 45 mcg as I seek a Goldilocks dosage.

So based on my experience I’d tolerate the venesections if not too many, be patient and not over cook the Peg dosage as I did. Peg takes time to be fully effective. In my experience, it’s a great drug.

Best Paul

[Marossi]

Hi Jon1972, I finally got my blood counts under control after about ten months of treatment with Pegasys. But I believe I had a higher dosage. I started off at 90 mcg every two weeks, then 135mcg every two weeks and finally 135mcg for several months. And I still needed regular venesections on top of that. It did work though and I haven’t had any venesections for over a year now. I am on a maintenance dose of 135mcg every three weeks. I was lucky as I had minimal side-effects from the Pegasys- in fact always found the venesections more difficult to deal with. My doctor had warned me that Pegasys is a slow-acting drug and that I would have to be patient. Good luck with your treatment.

[MPort]

Hi Jon I experienced much the same as other 2 replies. It took a long time to keep HCT at right level for me. Venesections were needed. I have been on it over 12 years. It's 2 years since my last one. The dose has just been changed from .45/10 days to 90/21. Hope I won't have to have another venesection while it adjusts. I too believe it's an excellent drug despite side effects and some venesections. Best of luck. Mairead

[EleanorPV]

As everyone has said, this is a slow acting drug. I’ve been on pegasys since Dec 2016. My maximum dose was 90mcg. My WBC and PLT reacted within 6 weeks. HCT took 16 months. I would suggest to be patient a little longer.

[jon1972]

Thank you for the replies. So how long would your physicians have you stay at a certain dose before moving it up? Am I being too aggressive by upping my dose 10mcg every month? Yes, I'm getting impatient after a year, but didn't realize HCT was so stubborn. I hate Venesections, but you all have given me a ray of hope that I might still get this under control

[charl17]

jon, for what it's worth this is my experience. I have proliferative phase MF. When I went off of HU my HCT, WBC and platelets went high. I started Pegasys. Platelets and whites went normal on 90 mcg per week after a couple of months. My HCT stayed at 48. I was offered a choice of phlebotomies or 180 mcg per week of Pegasys and I chose the higher dose. Five injections of 180 brought my HCT to 42 and I went back to 90 mcg per week. This was 19 weeks after I started Pegasys. At 9 months I went to 90 mcg every 2 weeks. My counts are fine. My opinion at the time was that my doctor was being very aggressive. It was not fun being on 180 mcg. But it worked.

[Jazzyb50]

Hi Jon, I've been on Peg Interferon (90 mcg weekly) for almost a year now. Everything in range apart from my HCT ☹️ However the venesections seem to be less often a lately so I'm hoping it's finally starting to have some effect, fingers crossed. Wishing you luck with your stubborn HCT!

Jane

[Miriammusic]

Hi Jon,

I’ve been on peg probably close to a year now. It took under 6 months at 45 mcg weekly to bring all my numbers into a good range. Hct currently at 41. If anything, as Paul mentioned, my wbc are a bit on the low side but okay. Stay the course and be patient. Wishing you the best!

Miriam