Had appointment with my MPN specialist last night. Overall good - staying course with Peg at current dose for now. Was a little disappointed that my platelets had bounced up to 508 (they were 412 3 weeks ago and have been "within range <450" since starting Peg 3 months ago). He was good to remind me that; 1) readings can vary/bounce almost 100 per reading; 2) we aren't shooting for any particular number - in his mind 450 is same as 508 and 3) that he has been surprised that I responded immediately to the Peg - usually it is a slow build to efficacy and he tells patients to give it 6 months to a year to really see positive results ,so the fact that I have had such a positive experience to date (platelets from almost 1,000 to within range) is great. Other bloods look good (WBC have bounced back to 7.4 from a low borderline so that's good).
So far no serious SE. Have some bone/muscle pain the day or two after the injection and some stiffness in the mornings but in general very very manageable. Try to arrange my schedule to allow me to sleep in the morning after the injection and to take paracetamol the night of and day after and that seems to have really helped. Have also upped my water intake.
Interestingly, have had the warm redness in my hands for the first time in a long time (since starting any cytoreduction HU or Peg) so will watch that to see if it is a sign that inflammation is increasing despite the Peg.
Have another appointment in 7 weeks with a blood test prior -so hopefully things remain good (if so we'll consider reducing the Peg dose).
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Solyesh
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I am currently on 180 mcg every two weeks. We were contemplating on lowering the dose to 135 mcg every two weeks but will now wait to see what the counts look like at my next appointment. I was a little worried about starting at such a high dose but have handled the minimal side effects pretty well. MPN specialist wanted to start out high given that I was not really responding as we had hoped to HU at 1,500 mg/day (21 pills/week).
Oh that’s a pretty high dose for an MPN, I’m only on 45mcg weekly, some people go up to 135mcg if the lower doses don’t work but rarely 180mcg, especially to go straight to that dose. Did you start in 180mcg every two weeks or build up to it?
Started at that dose - essentially 90 mcg/weekly - idea is to hopefully be able to lower it - the reverse of what we did with HU where I started at 500mg a day and worked my way up to 1,500
I hope you continue to tolerate it at that dose, most people tolerate it better by building up slowly. I’m aiming to stay at 45mcg for as long as possible and only increase if there is no change after a year. I don’t have any side effects at that dose luckily although some people do even at the lower doses. How is your liver tolerating it and do you also have thyroid tests? My ALT is up a bit but nothing serious 😉
yes my MPN specialist runs thyroid tests with every blood check - perfectly in line for now - same with liver (ALT same as last few years and well within normal limits)
My ALT is back down to 26 this time from 51 two weeks ago, much lower than it was pre-Pegasys so pleased about that 😊 I will ask my haematologist about getting the thyroid tests too in January at my next appointment.
Sounds like you’re responding well to Pegasys, as I did.My haematologist has told me the same about fluctuating counts - it’s the overall trend that matters, not whether an individual reading is a bit up or down compared to the previous one.
Brilliant news! I too responded immediately to Peg. Interesting that you’ve been told it sometimes takes months to kick in. That gives me hope that I don’t need to increase my dose.
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