Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: Allen Cunningham on March 05, 2016, 04:50:09 pm
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Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: TX Naive, Fibrosis Level 1
v/l: ~600,000 - ~1,000,000 ALT: 26, AST: 26
Started 12 wks Harvoni on 1/19/16
Hi guys, I'm on my 7th week of Harvoni and I tested nondetectable at week 5!
I haven't really had any side effects since I've been on it except for a very pleasant buzz the first week when I took it in the morning.
It is just so liberating to know that I am free of the virus. The psychological effects alone knowing that you no longer have the virus gives you a new joy for life!
I had a liver transplant in 2004, and when I had a biopsy in December 2015 I was at fibrosis level 1, my ACT and AST were normal and my virus level was at about 1 million.
Since I was post transplant I was at the top of the list for Harvoni and I didn't have to pay anything for a $94,000 treatment.
I probably got hepatitis C back in the mid-60s from injection drug usage or when I was in Vietnam as a medic I was around a lot of blood. All I know is I've had the virus in my body for probably 50 years. Even when I was diagnosed in 1997 I really didn't have any severe hep C effects that I knew about. They came later when I needed the transplant
No I post transplant for 11 years I didn't think I noticed any effects of my hepatitis C. I was very blessed because most post-transplant patients have cirrhosis within about 7 years because the virus attacks the new liver.
but now I feel so much better after only about five weeks. I am hoping they loosen the criteria for others so everyone can get this treatment. I'm coming up on eight weeks of treatment next week and one more bottle of Harvoni and I'll be finished.
Feeling very blessed!
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Congratulations on your "undetected" results! Great news.
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Way to go! Terrific news!!
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Thanks guys!
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I see everyone saying undetected. Why did my dr use Negative instead? Kind of wierd since everyone is saying undetected. Curious minds want to know
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It probably means the same thing. My lab report says
'HCV RNA Not Detected'
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Allen, TERRIFIC NEWS!!! ft
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Wonderful news Alan, so very happy for you.
I too have been undetected after 4 and now 8 weeks of treatment, and I feel wonderful. Tons of energy, I have been physically active every day for the first time in many years.
I have 16 pills left, and I expect this thing is gone. Best of luck to you Alan, hope this all continues.
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Fantastic! I 'm sure you will be completely cured since you were undetected after 4 weeks!
Harvoni (and the generics) are kickin' ass and taking no virus prisoners!
I am especially happy for all the folks that had to go through tx on IFN and all the disappointment that stuff brought with all of the false undetectable labs.
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I never had that issue while I was on interferon. My viral load never declined and in fact actually increased while I was taking Interferon and ribavirin.
There were several ways a patient could respond to interferon treatment.
SVR: Interferon TX worked for about 30% of GT 1 patients.
Relapse: Unfortunately many did as you said relapse
Breakthrough: Some were not detected for a time on TX but then the virus became detectable again while still treating
Non responder: The viral decreased but never reached not detected.
Null responder: Viral load unchanged by treatment like me.
Leave it to me to get a tough bug. :)
Harvoni is awesome.
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Hey Allen,
Wow. Nice! Amazing that you are in such good shape after all you have been through. A long time to have been coexisting with this crazy disease. You have been having the "Harvoni High", not everyone gets to experience that. Love your enthusiasm. You are a pretty stalwart person. Keep up the good work. peace
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Thank you guys for the encouragement!
Beto - Did you go from Cirrhosis to f0 due to Harvoni healing the scarring?
If so that is really amazing!
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Allen,
That is what my fibroscans report. I am suspicious that possibly one of the scans, could have been off or, glitched for some reason. I like to believe they are correct or close, however, a bit on the extreme side. I do have the reports. I thought of not posting because they are a challenge to believe for some. At least, I have had posts by a few folks who appeared to indicate that could be the case. I guess people could easily come on this site and say anything they like. Most are anonymous.
I also might "tell my story" for Lucinda and reveal my identity and post the scans. For now i will just say; yes, if the scans are correct very remarkable. I am being sincere. Also, I have seen a few accounts on this forum that indicate scenarios like mine and have found studies to indicate the same.
Lastly, I have to wonder if it is possible that the sound wave of the scan could direct through "other" tissue on occasion. That perhaps, bodies being different and internal organs in "slightly off" placements...well. Of couse now I am talking myself out of one of my happiest moments in my life. I hope they are correct and that millions will reverse damage after treatment.
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Just amazing, we live in a wonderful age!
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I will be seeing my liver specialist office in April getting my blood work and ultrasound soon.
I was diagnosed with cirrhosis in Jan 2008 by liver biopsy and had a fibroscan score of 27 to confirm cirrhosis for my insurance in Oct 2014. I treated in Mar 14 to Jun 14 relapsed but my liver had 3 months at least off and was not detected again after I treated again in Nov 2014 and have been not detected since so really my liver has been on a long vacation by now.
Getting very curious to see if I have had any improvement being a patient with symptomatic cirrhosis and for the last 2 years except for 4 or 5 months my liver was not being attacked.
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Good luck with your treatment, Allen. You've had a hard road to travel. I hope you achieve SVR and full good health.
And good luck with your upcoming tests, Lynn.
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It is just so liberating to know that I am free of the virus. The psychological effects alone knowing that you no longer have the virus gives you a new joy for life!
Feeling very blessed!
Congrats Allen! Love that quote by you above! 8)
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Thanks for all the encouragement guys, what a game-changer these meds are!
Platelet count - I have had low platelets since my liver disease before transplant, I used to have to get platelets before any surgery.
After transplant I don't need them for surgery, however my platelets have been marginal, 116 where normal is > 120-400
What about you guys that were low before and now have been cured for a long time, how have platelets responded?
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Hey Allen, I'm about 6 months post and my platelets are still low (about the same as your numbers on that) . Everything else normal range. I get tested again this Monday, I'm interested to see if they have come up at all. I'll let you know... Bree
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Thanks Bree, maybe they slowly come up after the healthy liver gets better at clotting blood
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I am waiting to see shortly will be having blood tests next week. My platelets have been about 90 with normal for my lab at 150. I haven't had hep c bothering my liver since I started harvoni in Nov 2014 so will be interesting to see if there has been any change. See if my cirrhosis improves at all
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I am waiting to see shortly will be having blood tests next week. My platelets have been about 90 with normal for my lab at 150. I haven't had hep c bothering my liver since I started harvoni in Nov 2014 so will be interesting to see if there has been any change. See if my cirrhosis improves at all
Hey Lynn, I hope yours come up too. Normal at my lab is 150 also. I just went back and looked and my platelets were 88 on Nov. 9 and 141 on Dec. 21 so they have come up. That's the highest in as long as I can remember. Low platelets have been a continual thing for me.
I've been sick lately so hoping my blood work looks good across the board. Fingers crossed for all of us. Let us know when you get your results.
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Bree - Platelets of 141 are normal on the labs I get. They are low normal, but they don't get flagged unless they are below 120
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My platelets are down because my spleen to be enlarged and sequestering platelets because of my cirrhosis. Mine were normal prior to being diagnosed with cirrhosis.
In July which was 3 months post treatment and 7 months since I tested not detected on Harvoni my platelets were still 92.
I guess there are several causes for low platelets including hep c infection but for mine to improve it would be a sign my cirrhosis is improving. So we shall see.....
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Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: TX Naive, Fibrosis Level 1
ALT: 26, AST: 26
Started 12 wks Harvoni on 1/19/16
Week 5 undetectible!
Lynn - Do you ever want to get a transplant, or are you coping OK with your liver disease?
For me, it was a huge thing to go through, but I felt so good afterward it was worth it. I remember thinking while I was laying in the hospital a couple of days after surgery, "I haven't felt this good since I was 16 years old".
That was in 2004, and I had to constantly worry about Hepc attacking the graft. One of the nurses there told me "Usually in around 7 years transplant patients will have Cirhossis again", - What a way to spoil the joy!
After almost 12 years all my labs were normal and Biopsies shows only mild inflammation, then I started Harvoni and am now undetectable.
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Hi Allen,
From what I understand I am not eligible for transplant as I am a child "A" MELD 8 and that you need at least MELD 15 to be listed because they want the risk of dying from liver disease to be greater than dying from the transplant.
I person I know on another forum who had a transplant commented it is generally better to keep what with you were born with if possible because of the whole process of liver transplant and lifestyle changes you guys have to deal with post like all the anti rejection drugs and the side effects from them.
I have heard as well that Hep c can come roaring back with a vengeance post transplant and even as soon as 5 years without cure of the virus the new liver can have cirrhosis thank goodness for our magic pills
I guess I am coping well enough. I work full time only complications were esophageal varicies that I had banded and a small amount of ascities and some edema. So as long as I remain compensated and don't develop HCC I would not even be eligible anyway. I hope that is not a bridge I ever need to consider to cross.
Huge congrats on getting your transplant and giant huge congrats on being not detected on treatment!
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Congratulations! I too tested "undetected" after 5 weeks. Im in week 7 too. Let's fight this fight!
Here's to a cure!!!
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Welcome to the forum, LeslieR! Good luck with your treatment. Please keep us posted on how you're doing.
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Lynn -
I had a low MELD also but I had a living donor so they transplanted me immediately.
I take Prograf for anti-rejection and I have had no side effects that ever made me feel bad. Just increased sensitivity to the sun and need to wear sunblock to avoid skin cancers. I have had to have a few frozen off but not the Melanoma type.
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My only living relative is my brother in NY. I live in WA. He is 69 years old. And like I said I am a child "A"
Just hoping that rock inside me that was once my liver improves with time. And anyway I am fine as long as I don't get HCC. With being cured I will probably die from something other than liver disease.
The liver transplant procedure itself is not with out risk.
Got this from the Mayo clinic site
"For liver transplants using living donors, the five-year survival rate is about 78 percent. That means that for every 100 people who receive a liver transplant using a living donor, 78 will live for five years and 22 will die within five years."
As a Child "A" my score says I have a life expectancy 15-20 years so better I dont get a transplant my odds are better without a transplant than with. Which is why a transplant center would not list someone as "healthy" as I am. I am 57 so 15 years is 72 the same age both my parents passed away. My other brother passed away at 68 years old.
So even with cirrhosis I will likely outlive my family.
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Can your Child-Pugh score improve with time? If your INR/Alb/Bili results improve, and they are partly what determine your Child-Pugh score, can you move from say B to A?
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Absolutely people on the transplant move up and down often because of changing test values.
The Child Pugh score was what was used to determine transplant priority but several years ago they started using the MELD score to prioritize patients for severity of liver disease.
Of course anyone without liver disease could be evaluated against either scale. A healthy person would score as Child A and MELD 6 as that is the lowest score possible
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Thanks Lynn, was hoping you'd see the question.
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Hope I answered your question. You and I are both child A so I assume this is about someone else
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I am soooo happy for you!!!!!
How many weeks were you on the Harvoni ???
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I am going on week 8 next week. I just had my labs yesterday but haven't gottn the results back yet