A brief overview of me, I was diagnosed with JAK2 & PV in November after being hospitalized with a clot in my splenic vein. I'm now having treatment to try and get everything to the right level 9peg & blood thinners & ad hoc venesections).
I was originally on 90 mg of Peg but was increased to 135mg 4 weeks ago. I have varying side effects, the headliners being fatigue & joint pain & weakness.
I'm posting because I was actually curious about the dosage other people may be on & how that affects you.
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PVKween
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Most people start on 45mcg then increase the dose as needed. Starting dose depends on your specific situation. While many people top out at 90mcg, some do need a higher dose. I was about to bump up my PEG dose when i switched to Besremi. I have had to gradually increase my dose of Besremi to 175mcg. I may need to go to 200mcg. Note that while they are both interferons, PEG and BES had different formulation so the dosing numbers are not equivalent.
The side effects from PEG and BES have been the same. I experience mild lymphopenia and borderline neutropenia. I also experience itching, usually across my back, and occasional popup rashes. The itching is well controlled by a daily dose of Zyrtec. The leukopenia is a dose-limiting factor. I am at or close to my maximum tolerable dose at 175mcg.
thank you for your thoughtful response. It sounds as if your side effects are well managed. I’m feeling as if mine are manifesting in ways that make me feel old before my time because of the joint pain that goes with it!
Sorry to hear about the arthralgia. I have been fortunate to have side effects that were easily managed. I forgot to mention that I also had a 3X elevation in liver function tests. My Integrative Medicine doc recommended a milk thistle extract supplement. This retuned my LFTs to normal limits.
Suggest that you consider consultation with an Integrative or Functional Medicine doctor. There are some of these docs attached to oncology units in some hospitals and some in private practice. Docs in these specialties are aware of alternative ways to manage adverse effects that doctors in other specialties are not as aware of.
Wishing you all the best and success managing the MPN.
I started on Peg, in November '23 with weekly doses. First @ 45, then 90 and just increased to 135 alternating weekly with 90,to help me tolerate the higher dose. Very early days to say, as I only had my first 135 in Monday but joint & muscle aches have increased.
Thank you for asking the question, as I'd been wondering about doses. I have PV and a platelet count of 720. My dose increased after a drop of 1 from a previous check. My highest recorded platelets 860. I know many on the forum are on 45 so like you, I'm very interested to know about the experiences of others and the reasons for a higher dose.
I too seem to have less energy but just hoping it will return once bloods improve and doses are reduced. I know peg is recognised as a preferred drug, so I'm trying to give it time and a chance.
Please keep us all updated on your journey. The forum folk have a wealth and knowledge of experience and have helped me too.
Thanks for responding. I’ll keep you updated! I too am willing to persevere with peg until everything is under control (hematocrit is 0.51 and they want me at 0.43).
But I am finding the side effects insidious. I feel ancient and my joints and back are quite bad at times, and I’m done and in bed by 9:30 😂. I do hope this all improves.
I am also having back and joint pain, reassuring to know, I'm not the only one, but sad to hear you are suffering too.
I have venesection to reduce my hct as my consultant prefers a level below .45. Since starting with Peg, I've not needed venesection, I came very close after my first few injections but then, it dropped to .40 and it has remained there, thankfully x
Hi I started in Feb 24 on 45mg....but 2 weeks ago doubled to 90mg, been relatively fine side effects wise apart from the first couple of weeks.
I have PV but as yet although platelets seem to be responding not having much.luck with HCT which has dropped and climbed over the last 6 weeks. We are holding our nerve at 90mg for now but I suspect it may need to increase I am getting great telephone and face to face care and advice and updates after blood tests etc....but HCT is now .48 was .46 last week but did rise to .49 in early Feb.
I was diagnosed with PV 18 months ago aged 59 and and after a 3 week emergency rush of venesections I was then started on weekly 45mg doses of Pegasys. My blood counts responded fairly well so after 4 months I was put up to 67.5mg a week. I was on that dose for ten months until 4 months ago when my MPN specialist dropped me to 67.5 fortnightly because my platelet count was sitting a bit low by then. Everything else has been great with regard to my various blood counts and I’m very relieved that the drop in injection frequency hasn’t changed that. My specialist is now aiming to get me down to one injection every three weeks.
My last counts were steady at
Haematocrit 0.39
Haemaglobin 120
White Cells 8.0
Neutrophils 4.92
Platelets 251
Initially I struggled with high temperature, headaches and brain fog for a couple of days after each injection but this has become more manageable with time and now I just get a day of brain fog and some head pain after each fortnightly dose. I am very grateful to have access to Pegasys. Sadly we cannot have Besremi for PV here in Australia but I am very relieved that my journey with Pegasys has been so successful, so far!
18 months ago I started on 45 mcg every two weeks, then 90 and then 135 mcg which is my current dosage. Lately I had the need for venesections with hct over 45.
Interestingly, as I moved recently to an EU country, I am being switched to Besremi (which I don’t believe is available yet on the NHS). As in the USA, in the EU Besremi has the indication for PV, not Pegasys. We live to learn :))
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