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Pegasys…14 Years w/ PV & now MDS

Home forums Patient Message Board Pegasys…14 Years w/ PV & now MDS

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    Heidi
    Participant

    My husband of 23 years is going to begin weekly Interferon injections in September.
    He has managed the PV w/ Hydroxurea, Baby Asprin, & regular phlebotomys. The dosage of Hydrox has continued to increase over the years which led to the first marrow biopsy that revealed the MDS.

    Hello Again, Please refer to initial post below, thank you.

    1. My husband is scheduled to start weekly 90 mcg doses of Pegasys in early September. It is only available in 180 mcg dispensers. The medication cannot be preserved, therefore we must discard half of the medication each week, $500/month, into the trash. We would rather donate the money to research. I am sure we are not alone on this and perhaps should be grateful that the monthly out of pocket is not more.
    Any thoughts on contacting Genentech?

    2. Further research on Pegasys refers to use treat Hepatitis C and Liver problems with no mention of MDS.
    We trust our doctor, but this seems odd?

    On to more research…Many Thanks for your thoughts and support.

    Heidi

    Blasts – 5.3% – consistent w/ myeloid stem cell abnormality

    Myelodysplastic – level of this abnormal blood production is quite small, but there is enough to be convincing.

    $1000/month out of pocket which is painful but could be much, much more. Best case scenario the treatment will irradicate the diseases, or keep both from progressing, or he won’t be able to tolerate Pegasys, or?

    We are terrified……..

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