This is now 4 years since I was diagnosed with a quite proliferative form of PV (JAK2 at 83%, hematocrit 67%, etc…). After 4 years of weekly injections of Pegasys, the JAK2 VAF is now down to 2.3%. No phlebotomies needed since 2019. Pruritis or fatigue is gone. No objective symptoms. Over 2 years of weekly injections of 135mcg were needed, down to 112mcg for 8 months, then 90mcg for 2 months, another 2 months at 65mcg, and now at 45mcg. Interestingly, the hematocrit was stable (36-39)over the last 2 years despite the progressive dose reduction. Still at 37. The weekly 45mcg injections seem still too much and will be reduced or stopped completely if necessary. Conclusion: The highest acceptable interferon dose (confortable for the patient) as early as possible after diagnosis seems to be a reasonable approach to get the best clinical results.
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Manouche
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Hi there. Excellent results in AB reduction! It's also my 4th year on Pegasys, but I never used more than 45mcg/week. At the moment, 45-50mcg every two weeks. HCT is in the 40-43 range (was 46-51% max). I have not tested my AB yet. The starting AB was 17%. And my main problem was platelets (500-800 range). Now under 200.
The 37% HCT seems a bit low for a male. What is your RBC at the moment?
HCT is a bit low and RBC are at 4.2. Platelets have always been within range , even at diagnosis. It shows once again that JAK2 mutation doesn’t explain everything !
Good news! It seems you are headed towards a molecular remission. It does sound like a further dose reduction is in order since HCT is on the low side now.
Great results. Glad peg working out for you. I like peg too but 65mcg is the highest I can go otherwise it seems to affect breathing. What a brilliant allele reduction
Are LDH and CRP normal? RDW normal? Immature granulocytes?
My PV is more aggressive than yours as my RBC count stays in the 5.7-6.0 range, my HCT in the 45-48 range, Platelets 350-400, despite 90 mcg weekly injections for 7 years. 3 phlebotomies per year and a starting Jak2 allele burden of only 36%. LDH & CRP are normal
what an awesome story to start my day. Thank you for sharing and congratulations! I am in year one of same journey with peg. You have renewed my resolve this is going to work out. Stay safe!
This is so great to see! It’s especially good to see that allele burden come down so much. What a relief! May all good news continue as you settle on a new dose.
Thank you for sharing your story. It’s given me some hope that Interferon might give me the same result. My main symptom is aquagenic pruritus and I hope beyond hope that Interferon will reduce my levels, and when it does, reduce or eliminate my itching. I’m really happy that you’ve had a great outcome. Long may it continue.
Actually, interferon made my pruritus worse during the first few months. It took about 2 years to progressively disappear. It’s gone now for a couple of years 🤞🏻
That’s fantastic news from where you were to where you are now, you couldn’t ask for better. You’ll have to let us know if your counts including allele burden hold steady🤞.
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