Post by zippydedodah on Apr 28, 2016 7:57:43 GMT
The good, the bad and the ugly – a tale of curing
I contracted HepC back in 1967 from use of IV drugs – methadrine and heroin, specifically. In 1968/69 I was hospitalized twice – deathly ill from HepC. In those days it was called serum hepatitis and they did not have all the “numbers” available that we use today. At any rate, I was too sick to remember any numbers if they did give them to me. I do recall that my urine was the color of coca-cola, I was as yellow as a school bus and I had a hard time standing upright for more than 30 minutes. I was 5’9” tall and weighed 95 pounds at the time of my second hospitalization. I was receiving care at Neuro Psychiatric Institute at UCLA, a very reputable institution. When they released me, they told me to just go straight to the morgue next time.
I spent the summer of ’69 kicking the hard drugs and IV use. I started 1970 on a health kick. I was a vegetarian and doing Tai Chi daily. All of my symptoms went away and I felt great. This state of well-being continued for a long time. So much so, that in the 90s, when I casually asked my doctor: How is my HepC doing, he said: What HepC? He said I never showed any symptoms and he never had me tested for HepC. Test he did and HepC I still had. My viral load was around 6 million and several liver functions were about 10-20% outside of normal range. Since I was asymptomatic, he suggested I just continue my life without medication.
In 2005, I began my plans for retirement and spoke to a liver specialist. I informed her of my plans to retire to Thailand (she happened to be Thai) and she asked me to consider treatment under my current health plan rather than having to pay out of pocket in Thailand. We discussed my options – she informed me that Genotype 1-A only has a 40% chance of cure with the Interferon protocol. It was a chance I was willing to take.
We proceeded with treatment and after about 3 months, I felt like the drooling fool in the corner. I was unable to work, had taken medical leave, and was useless to my wife and child. A re-test at 6 months showed my VL to be around 40,000 and some liver functions still out of normal range, so stopped treatment.
This whole time, I continued to be asymptomatic. This became my new normal.
Fast forward to 2015.
My last liver panel was in 2009 when I retired from USA to Thailand. VL was holding around 4 million and other liver functions were still within 10-20% of normal.
I became aware of Harvoni in early 2015, but the cost was prohibitive and I felt fine, so no reason to pursue treatment (I thought).
In late September I was chatting with a friend in USA who recently finished Harvoni treatment and was declared cured of HepC. He asked me how I was doing. I told him fine, no symptoms and no tests since 2009. He convinced me I needed to get a full liver panel because just feeling fine did not mean I WAS fine.
I got a full panel – including VL and genotyping. The results were not good. I proceeded to get a fibroscan – things got even worse.
I had a VL of 8 million, 3 liver indicators were 200% beyond normal range and I had fibrosis level 4. Still genotype 1-A. I was very alarmed to say the least.
My friend encouraged me to get on meds, fast. He directed me to Greg Jefferys in Tasmania – a HepC advocate for less expensive medications.
Long story short: In October 2015, I contacted representatives at Incepta Pharmacy in Dhaka, Bangladesh. I received pricing info from them and the necessary requirements to purchase generic Harvoni (labelled TwinVir) from their company.
November 5th I flew to Dhaka, met with the company representatives at their main offices in Dhaka. I provided a prescription from my Thai doctor and purchased a 24 week course of medication for about 11 USD/per pill. A far cry from the $1,100/pill in United States.
I was tested in February 2016, after 12 weeks of treatment.
The virus was “undetected”.
Tomorrow (4/23/16) I take my last TwinVir pill. End of treatment. End of story? We shall see.
I go in 2 weeks for a liver ultrasound (doctor said another fibroscan was unnecessary and it is expensive here in Thailand) and blood work. I expect everything to be well. I will re-test for VL at 24 weeks post treatment to see if I have achieved SVR 24… my best guess is that it is all over for my 48 yr love/hate affair with HepC
EXHALE
I contracted HepC back in 1967 from use of IV drugs – methadrine and heroin, specifically. In 1968/69 I was hospitalized twice – deathly ill from HepC. In those days it was called serum hepatitis and they did not have all the “numbers” available that we use today. At any rate, I was too sick to remember any numbers if they did give them to me. I do recall that my urine was the color of coca-cola, I was as yellow as a school bus and I had a hard time standing upright for more than 30 minutes. I was 5’9” tall and weighed 95 pounds at the time of my second hospitalization. I was receiving care at Neuro Psychiatric Institute at UCLA, a very reputable institution. When they released me, they told me to just go straight to the morgue next time.
I spent the summer of ’69 kicking the hard drugs and IV use. I started 1970 on a health kick. I was a vegetarian and doing Tai Chi daily. All of my symptoms went away and I felt great. This state of well-being continued for a long time. So much so, that in the 90s, when I casually asked my doctor: How is my HepC doing, he said: What HepC? He said I never showed any symptoms and he never had me tested for HepC. Test he did and HepC I still had. My viral load was around 6 million and several liver functions were about 10-20% outside of normal range. Since I was asymptomatic, he suggested I just continue my life without medication.
In 2005, I began my plans for retirement and spoke to a liver specialist. I informed her of my plans to retire to Thailand (she happened to be Thai) and she asked me to consider treatment under my current health plan rather than having to pay out of pocket in Thailand. We discussed my options – she informed me that Genotype 1-A only has a 40% chance of cure with the Interferon protocol. It was a chance I was willing to take.
We proceeded with treatment and after about 3 months, I felt like the drooling fool in the corner. I was unable to work, had taken medical leave, and was useless to my wife and child. A re-test at 6 months showed my VL to be around 40,000 and some liver functions still out of normal range, so stopped treatment.
This whole time, I continued to be asymptomatic. This became my new normal.
Fast forward to 2015.
My last liver panel was in 2009 when I retired from USA to Thailand. VL was holding around 4 million and other liver functions were still within 10-20% of normal.
I became aware of Harvoni in early 2015, but the cost was prohibitive and I felt fine, so no reason to pursue treatment (I thought).
In late September I was chatting with a friend in USA who recently finished Harvoni treatment and was declared cured of HepC. He asked me how I was doing. I told him fine, no symptoms and no tests since 2009. He convinced me I needed to get a full liver panel because just feeling fine did not mean I WAS fine.
I got a full panel – including VL and genotyping. The results were not good. I proceeded to get a fibroscan – things got even worse.
I had a VL of 8 million, 3 liver indicators were 200% beyond normal range and I had fibrosis level 4. Still genotype 1-A. I was very alarmed to say the least.
My friend encouraged me to get on meds, fast. He directed me to Greg Jefferys in Tasmania – a HepC advocate for less expensive medications.
Long story short: In October 2015, I contacted representatives at Incepta Pharmacy in Dhaka, Bangladesh. I received pricing info from them and the necessary requirements to purchase generic Harvoni (labelled TwinVir) from their company.
November 5th I flew to Dhaka, met with the company representatives at their main offices in Dhaka. I provided a prescription from my Thai doctor and purchased a 24 week course of medication for about 11 USD/per pill. A far cry from the $1,100/pill in United States.
I was tested in February 2016, after 12 weeks of treatment.
The virus was “undetected”.
Tomorrow (4/23/16) I take my last TwinVir pill. End of treatment. End of story? We shall see.
I go in 2 weeks for a liver ultrasound (doctor said another fibroscan was unnecessary and it is expensive here in Thailand) and blood work. I expect everything to be well. I will re-test for VL at 24 weeks post treatment to see if I have achieved SVR 24… my best guess is that it is all over for my 48 yr love/hate affair with HepC
EXHALE
