Pegasys for MF transitioning from hydroxycarbamide - MPN Voice

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Pegasys for MF transitioning from hydroxycarbamide

jointpain profile image
3 Replies

My darling wife, had her appointment today, and her blood is well below par her Hgb is 82 hematocrit 0.27, platelets 213 which is good, white cells 45. The hematologist was talking about introducing pegasys interferon injections, after her 3 bags of red cells and a ferinject.

She is worried about losing her head of hair, as it's a bit thinner than it was, and she doesn't want to lose it. Does anyone have any experience of losing hair with pegasys? The internet says it will grow back once the treatment is ceased, but as it's for an MPN we don't expect it to finish.

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jointpain
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hunter5582 profile image
hunter5582

I did not experience some hair loss from Pegasys or Besremi. I did experience some hair loss from the venesection-induced iron deficiency however. Hair loss is a common adverse effect from hydroxyurea. I believe that some on the forum have reported that hair grew back when they switched from hydroxyurea to Pegasys. There is no way to predict whether that would be the case for your wife. We all respond differently.

Wishing you both all the best.

jointpain profile image
jointpain in reply to hunter5582

Thank you Hunter, you are a really good responder. We thought the hydroxycarbamide may have caused some hair loss but never considered the low iron making things worse. The MF does respond well to very small differences in hydroxycarbamide dose, but the hematologist won't accept this. Just half a tablet a week makes a big difference over a couple of weeks. So when he asks her to up her dose from three tablets a week to one a day her platelets quickly go to 50 or less, we have learnt to adjust by a half tablet a week. She gets her blood tomorrow 😁😁

Mishie14 profile image
Mishie14

I had a miserable experience from first treatment drug hydroxyurea. That included some hair loss from every wash and brushing. Stopped taking it due to overall bad side effects. Took a couple months to get that drug out of my system. Fast forward to current treatment of low dose peginterferon. Started last March at 45 every two weeks then to weekly and then dose up to 68 per week now. There was some hair loss at the start but so so minor compared to HU loss. Starting low and increasing the dose slowly has been a positive approach for me. Hair loss is not even a concern now. We all react differently and I hope your wife has the positive reaction I am having. Stay safe!

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