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Matt Thank you for the encouragement and the laugh.Its nice to know there is a site like this for people in (my our) condition to come to.I have been taking every hep c medication under the sun since the mid 80s starting with plain old interferon (3 million to 5 million to 10 million) and tortured with every other poison they came out with and nothing has gotten rid of this disease.The frustrating part is once im off the meds and my numbers go up I cant qualify for trials because my platelets get too low and the bilirubin gets too high.Thats why this time I have to sink or swim with Dr Freeman.I don’t really know if its good that Im going directly from one regimen into another.Whether my body can handle it or not remains to be seen but I must try or Im gonna die anyway.
Good Luck GlenThank you Kihilde
I have been emailing with Dr Freeman and he seems to be more knowledgable than either of the 2 doctors I see,1 of them from U of Penn who has a massive hep c program along with a big liver transplant department,which Im trying to avoid.Dr Freeman had me purchase sofosbivir as a 3rd addition to the remaining zepatier and ribavirin that I am currently taking.4 months worth shipped out today from the Kingswood compounding pharmacy in Austrailia.Hope it gets to me before my meds run out,you folks are the complete other side of the planet from me.(I am right outside new York City).I will be talking soon I hope with Dr Freeman about what he wants me to continue with the sofosbivir after my zepatier and ribo run out.This is gonna be very expensive for me but my life is on the line so I cant worry about it.I am not clearing on the 2 meds I am currently taking and if I don’t keep trying I will just go back to the “Death cramps” in my legs that are so painful,plus the itching from the high bilirubin that makes me nuts and of course the nose bleeds that always happen at the worst possible moment.I have had enough of this disease and I am going to get rid of it or die trying.
GlenFretboard-where do I find this private message link that you are referring to.Im a dinosaur and not very computer savvy.
Thank you for this info-There is no name for the pharmacy on the prescription.I would like to contact Kingswood pharmacy to see if they are the one.I have never tried calling out of my country (USA).The phone number is very different from ours and I don’t think I can contact them by phone.Would you have an email address for Kingswood pharmacy.I need these meds as quick as possible so I can use them with my meds for the final month that I will be on them.
GlenAlso geno 1a stage 4-lifetime non responder-finally cleared on sovaldi-olysio,relapsed.Did 24 weeks of just harvoni after that,cleared,relapsed.Now im finishing month 3 of 4 months of Zepatier and ribavirin.NUmbers are very good except I cant clear.1st bloodwork I went down to 18,0000 and 2nd bloodwork showed quantification went up to 32,000.Frustrating part is the numbers will go right back up to the roof once I stop and I cant qualify for any trials because my platelets get too low and my bilirubin gets too high.My family needs me,I would sell my soul to find the right medication.
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