Interferon dosage?: I have a question for PV... - MPN Voice

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Interferon dosage?

clevemic profile image
4 Replies

I have a question for PV patients, being treated with Peg-Interferon. I am a 51 year-old, who was diagnosed 2 years ago. I began taking 45 mcg of Pegasys, seven weeks ago. I was doing very well, as I have had minimal side effects, have been feeling less fatigued, and have had improving blood levels. Today, I had an appointment, and all numbers have continued to trend in the right direction, except my red blood count. In an effort to bring that number down, my doctor has doubled my Peg dosage. She does not want to control it with more frequent venasections, as that will raise my platelet count, which has been improving. So...... my questions to you are "What can I expect on 90mcg? Increased side effects? More fatigue the day after injection? Should I wait until after Christmas, so that I can fully enjoy the holiday?" I trust my doctor completely, but am looking for reassurance from those who have lived it. Thanks so much!

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clevemic
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Paul123456 profile image
Paul123456

Is this from MPN Specialist?

How high are your Platelets, RBC and HCT?

I’m PV, age 62 on 7-8 weekly venesections and aspirin. Not aware of venesections dramatically increasing my Platelets which range around 50-650.

My experience of non MPN doctors is that horrified by my low iron/ferritin combined with venesections. However MPN specialists view low iron as price we pay to not feed the fire.

Re fatigue/breathlessness, have a look at MPN-Net. They are reporting study announced at last week’s Ash Conference re Pulmonary Hypertension. Very early days but they claim might be a link with MPNs to be aware of.

fee13 profile image
fee13

I'm about to start interferon next week so am not much help to you. I shouldn't think your red cell count should rise that dramatically over a week if you wanted to hold off until after the Xmas season, ask your Doctor what he thinks. Good luck!

JSKly profile image
JSKly

Hello Clevemic

I have PV and in May began with 90 mcg of Pegasys. My platelets which had been a problem dropped and I had no side effects. My red cells gradually rose and I've had 3 venesections. My platelets are still well within good range.

teecee profile image
teecee

Hi Clevemic

I’ve been on peg-interferon for nearly 4 years now. I started on a low dose and over time have gone up to 135 mcg. I didn’t notice any increased side effects with a higher dose other than my bloods being much better controlled.

Hope you have a good Christmas.

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