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Author Topic: Just found out..advice needed please  (Read 22005 times)

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Offline Willow1122

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  • Posts: 19
Just found out..advice needed please
« on: March 19, 2015, 05:00:11 pm »
Hello everyone, Ive been browsing this forurm today and reading the posts..It has definitely calmed me down a bit and I'm so grateful to have advice and support..so thank you in advance. I've not been feeling well so I went to planned parenthood for an exam because I don't have health insurance. I used herion about eight years ago and have been clean ever since. When I first stopped using I had std testing done and they told me no phone call was good news, so I thought I was in the clear. Well I had all the testing done just because it wouldn't hurt..and my hvc anti body test came back reactive 30.20  > 1.00. I received my results using a patient portal and haven't spoken with planned parenthood yet ( I've called 3 times now,  and they keep telling me they'll call back) On my results, it said hvc RNA test wasn't suggested, so I'm guessing they know for sure no further proof is needed? I don't have any direction on what I'm supposed to be doing, and I don't have insurance to start making appointments..I'm scared because I have symptoms ( light colored stool, dark urine, and some abdominal pain) I want to get medicine asap because..well I'm afraid I'm going to die quickly from this because I'm having symptoms. I filled an app online for medicade and have to wait for them to get back to me. I just don't know what to do. All I've done was tell my mom and boyfriend. We've been together for 6 years, using condoms but still, there's other ways I could have transmitted to him. He's going to get checked the coming week. Any advice would be greatly appreciated, especially for the Pittsburgh area..thank you so much for taking time to read this, light and love to all!

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #1 on: March 19, 2015, 05:20:44 pm »
Hi Willow. None of us here are doctors, including me. But here's my 2 cents:

1. You must find a doctor who will test you for presence of virus, not just presence of antibody. And make sure that test includes information about Genotype as well, because you will need that for treatment decisions. I suspect you do have an active HCV infection (not just HCV antibodies from a past infection that was cleared) based on the symptoms you describe.

2. Do not panic about imminent death. HCV doesn't work that way. Many of us here have had it for decades. I have had it for more than 40 years and am still working & enjoying reasonably good quality of life (although I am glad I will be starting treatment in a couple of months). I am not trying to minimize the seriousness of HCV. But it isn't a cause for panic in most cases.

3. With your boyfriend, primarily be careful not to share any personal toiletries or other items that could contain even microscopic amounts of blood - e.g., toothbrush, razor, nail clippers.

4. To be on safe side with your liver health, assume you DO have HCV and make adjustments to lifestyle and diet now to lighten the load on your liver. Don't wait for lab test confirmation. There are a lot of things you can do to reduce the load on your liver: no alcohol; reduce sugar, salt, processed foods, junk food; eat fresh fruits and veggies; drink plenty of water.

5. Bad as any HCV diagnosis may be, there are now treatments available that will cure it in most people. People with no insurance can look for clinical trials and/or Gilead's "Support Path".

Good luck Willow, and keep us posted. :)

Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Willow1122

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Re: Just found out..advice needed please
« Reply #2 on: March 19, 2015, 06:51:11 pm »
Thank you so much Kim. I'm trying to stay positive and hopeful. I looked up trials in my area and they are either completed or not recruiting right now, I'll keep checking. Also, I tried to sign up for support path, but it wouldnt accept my application because I don't have health insurance. I'm going to planned parenthood tomorrow to get my results in person and what to do about insurance. I'm vegetarian and gave up crap food a while ago..at least one foot on the right path :) Anyways, thanks again for responding and best of luck with your treatment, take care! Planned parenthood just called and confirmed I have HCV..they are sending me a list of low cost doctors I can see

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #3 on: March 19, 2015, 06:59:17 pm »
Sounds like you are on the right road, Willow. Glad to hear that Planned Parenthood is giving you a list of low-cost doctors. And at least you now know your HCV status for certain. Be sure to retain your own hard copies of all test results (there will be lots). I have more than once had to give new doctors copies of results from past doctors/tests. Plus having your own copies allows you to do your own research.

And keep following these forums and posting questions. A lot of knowledge and good advice to be gleaned here.

Best,
Kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline BubbaT

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Re: Just found out..advice needed please
« Reply #4 on: March 19, 2015, 08:48:29 pm »
Hi willow, you have friends here so welcome to the forum, we try to help as much a s we can all of us are in this together so don't worry, just learn as much as you can about taking care of yourself, Many of us are older I'm 57, many are  over 60 here so
We hope you get the meds as soon as possible...

We fight this virus together, and don't care how you got it....

Just get well...
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Willow1122

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Re: Just found out..advice needed please
« Reply #5 on: March 20, 2015, 03:09:48 pm »
Thank you for being so welcoming.. I'm trying to hold it all together as best as I can. My next step is getting a liver biopsy or fibro scan, I read about the procedures and need to find a doc to take me for low cost. Any suggestions from personal experience on which is better?

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #6 on: March 20, 2015, 03:47:13 pm »
Definitely get the fibroscan if that is available to you. Painless, non-invasive, and gives the doctors more accurate information about the stage of your liver than a biopsy does. A fibroscan is a specialized ultrasound that measures liver stiffness.

Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Mike

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Re: Just found out..advice needed please
« Reply #7 on: March 22, 2015, 03:38:34 pm »
Actually, a fibroscan is accurate in identifying significant liver damage; but is not very accurate identifying grade 0-2 fibrosis.

"Fibroscan is very good at detecting a normal liver or a liver with extensive fibrosis (cirrhosis) but it is much less sensitive at detecting mild or moderate liver fibrosis. In addition it should be noted that Fibroscan will only measure liver fibrosis and will not help to discover the cause of the liver damage when this cannot be detected by blood tests. Under these circumstances a Liver biopsy may still be necessary. Fibroscan is however useful for following the progression of liver fibrosis over years and because it is non-invasive can be repeated regularly without risk (unlike liver biopsy)."

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #8 on: March 22, 2015, 04:30:11 pm »
Thanks for that fibroscan info, Mike.:)

Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline sapphire101

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  • "Stop worrying and start living"
Re: Just found out..advice needed please
« Reply #9 on: March 22, 2015, 05:56:30 pm »
FYI:
Fibroscan is not available unless you are near an urban medical center. Or at least close to a large city which many of us are not.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Willow1122

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  • Posts: 19
Re: Just found out..advice needed please
« Reply #10 on: March 23, 2015, 01:35:50 am »
Thank you Mike for the info..I'll go with the biopsy first to see what condition I'm in. Then I guess fibroscan could be more helpful throughout treatment..and less painful. I was definitely with Kim on the scan though! Sounded like a walk in the park compared to the biopsy.. Dammmn. Thanks guys, you've been really helpful :)

Tomorrow is going to be busy but hopefully I'll get the ball rolling with insurance.. This is extremely nerve racking because I don't know what the right insurance is for harvoni or even what my options are to give me the best chance at fighting this. Even though I'm gathering information about HCV I don't know what path I'm suppose to take. I looked for support group in Pittsburgh just to have a more regional approach for information.. But I couldn't find one. I really feel lost.

On the bright side, I played scrabble for the first time and won lol My boyfriend got some board games out to keep our minds off of everything and it worked :) and hung some wall planter boxes and jammed to some music..it helped so much just to at normal, these past few days have been ruff!




Offline Willow1122

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Re: Just found out..advice needed please
« Reply #11 on: March 23, 2015, 01:42:08 am »
Thank you too Sapphire, I'm in Pittsburgh so there probably is one somewhere around here..

Offline Mike

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Re: Just found out..advice needed please
« Reply #12 on: March 23, 2015, 07:43:58 am »
Hi Willow1122,

I would probably have a fibroscan first and hold off on the biopsy unless your doctor indicates you need one.

The fibroscan is not as accurate in grading low level fibrosis; but can pinpoint severe fibrosis and cirrhosis.

You can always have a biopsy later if it is needed to confirm results of the fibroscan or for further diagnosis.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Bituman

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Re: Just found out..advice needed please
« Reply #13 on: March 23, 2015, 11:14:49 am »
Thank you Mike for the info..I'll go with the biopsy first to see what condition I'm in. Then I guess fibroscan could be more helpful throughout treatment..and less painful. I was definitely with Kim on the scan though! Sounded like a walk in the park compared to the biopsy.. Dammmn. Thanks guys, you've been really helpful :)


Hi Willow,

Obviously you should follow your doctor's advice.  However, if that doctor's advice is to have a biopsy, I want to let you know my experience.  That is, contrary to others' experience, it was no problem, very little, if any pain.   I would call it more like mild discomfort.   I had one in 1976 and another in 2007. I actually remember the first one a little better because they made me lay on my side for 4 hours afterward!  I don't consider myself to have a particularly high pain tolerance, probably average.  Sadly, others on this forum have had different experience.  Just wanted to balance that out a little.  One more thing, my current IM doctor gave me his opinion that the most important part of a liver biopsy is interpretation of the results.  He felt that many are qualified to do the biopsy itself, but less so interpretation of results.  He helped me by making sure the sample "sliver of liver" was studied by someone he knew and trusted. 

Good luck with your treatment. 
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Willow1122

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Re: Just found out..advice needed please
« Reply #14 on: March 23, 2015, 12:49:09 pm »
The only insurance I can get right now is either state assistance or catholic charities.. If I'm accepted, I'll take whatever they give me and be grateful. I don't think I'll have a choice of which one when it comes down to it. But thank you all for your time and advice.

Healing and positive vibes to you all!

Offline dragonslayer

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Re: Just found out..advice needed please
« Reply #15 on: March 23, 2015, 01:54:57 pm »
Hi Willow1122,

I would probably have a fibroscan first and hold off on the biopsy unless your doctor indicates you need one.

The fibroscan is not as accurate in grading low level fibrosis; but can pinpoint severe fibrosis and cirrhosis.

You can always have a biopsy later if it is needed to confirm results of the fibroscan or for further diagnosis.

Best wishes, Mike

Mike, a question Ive always had about Fibroscan is that, given its inaccuracy for stages 0-2 fibrosis, what happens if you take the test so as to rule in or out serious fibrosis defined as stage 3 or 4 and the result comes back F2?   I mean, if weve had recent biopsies that score Stage 0-1, and now a couple of years later we do a Fibroscan that returns an F2, say,  do we toss?  How should we interpret stage 2 Fibroscan  scores in the absence of any corroborating data?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #16 on: March 23, 2015, 03:58:48 pm »
The only insurance I can get right now is either state assistance or catholic charities.. If I'm accepted, I'll take whatever they give me and be grateful. I don't think I'll have a choice of which one when it comes down to it. But thank you all for your time and advice.

Healing and positive vibes to you all!

Good luck to you Willow!! So glad you have some options available for insurance/payment! And yes - accept whatever opportunities are presented to you for getting further testing so treatment decisions can be made. It may indeed be a fibroscan initially. From everything I have read, that is a less expensive testing method than biopsy. In the region where I live, fibroscan has essentially replaced biopsy for liver staging of HCV. At least this is what all the doctors and nurses have been telling me. They said I probably couldn't get a biopsy even if I wanted one. But every region has its own status quo for these things. (I did have a biopsy many years ago - and its not that big a deal, if that is the way your health care providers end up steering you.)

Best wishes for everybody's healing,
Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Mike

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Re: Just found out..advice needed please
« Reply #17 on: March 23, 2015, 05:22:32 pm »
Hi Paul,

The fibroscan can is great in diagnosing grade 0; but falls off a bit in accuracy of grade 1-2. This doesn't mean that it cannot accurately differentiate between 1-2; just that there seems to be a higher error rate.

The fibroscan is accurate at grade 3 and can confirm grade 4 (cirrhosis).

A biopsy seems a bit more accurate across the entire grade spectrum.

However, I don't think you can discount a grade 2 fibroscan score for a couple of reasons.

First, since a fibroscan can accurately detect grade 0 (no damage) as well as distinguish between grade 3-4, it can be assumed that a score of 2 would mean some damage up to, and including grade 2.

Second, the fibroscan is less invasive and can be repeated in short intervals. For instance, if an individual has a grade 2 score and a year later a repeat scan determined a grade 3, then continued progression can be confirmed.

I would look at a grade 2 score as either a firm grade 2 or maybe somewhere between 1-2.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #18 on: March 23, 2015, 05:40:35 pm »
Another consideration re: the accuracy of Fibroscan, is that the reading is affected by the degree of liver inflammation you have at the time the scan is done. Liver inflammation will fluctuate day to day and week to week. The link below reports  that mono-infected HCV people at Stage F3 or F4 with ALT > 100 had a fibroscan value 2 kPa (kiloPascals) higher than those with ALT < 100 at time of scan. That makes me wonder if some F3 diagnoses might really be F2, once high ALT is taken into account.

http://www.ncbi.nlm.nih.gov/pubmed/19430093

Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Willow1122

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  • Posts: 19
Re: Just found out..advice needed please
« Reply #19 on: March 24, 2015, 12:32:47 pm »
Hey everyone, I just want to say..I'm very thankful too you for sharing your thoughts and experiences with me. Its kind of a strange feeling needing people so much that you've never meet before,  but also very empowering that I'm not alone...especially Kim, you have been very kind since I found out and it means a lot to me! I know I'm probably not the first to be all mushy, but it had to be said :)

I have my first appt. tomorrow, luckily because someone canceled. Hopefully they take some blood for my levels to be checked! When I get my results, I'd like to post them..should I keep it on this thread or start new one?

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #20 on: March 24, 2015, 05:34:13 pm »
Thanks very much for your kind words, Willow. Great that you're getting an appointment so quickly! I would consider that a sign from the Universe that things will go your way along this path to being cured.

I would say post your test results here on this thread. But I don't really know what the proper protocol is. ;)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Willow1122

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Re: Just found out..advice needed please
« Reply #21 on: March 24, 2015, 05:51:52 pm »
You're welcome :) Anytime there are coincidences, I always look up and say " Ooooh U " lol..

Yeah, I don't know either.. I actually only read the "before you post" message yesterday, I'll put it on this one and see how it goes. Thanks again and take care!!
 
 

Offline Mike

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Re: Just found out..advice needed please
« Reply #22 on: March 24, 2015, 06:23:53 pm »
Hi Willow,

You can post your lab results on this thread or start a new one. Basically, posts should relate to the thread posted in. For example, if a thread is discussing the impact of insurance denials (topic) and you post something about healthy eating, that would not be on-topic, and would be more appropriate as its own thread.

The guiding principle is to try and stay on topic.

Since you started this thread, and the topic is about "just found out..advice needed please" it would be more than appropriate to post this info here. Or, if you want to open the discussion up to more members, you could post results in a new thread, titled, let's say, "I got my results and need some feedback."

Best wishes and thanks for being part of this community!

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Willow1122

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Re: Just found out..advice needed please
« Reply #23 on: March 25, 2015, 07:55:48 pm »
Ok, sound good :) Thanks Mike!! I'll just start a new one when I get some results..Mainly for myself so I don't have to scroll alllll the way down to read feedback.

Offline Joseph80

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Re: Just found out..advice needed please
« Reply #24 on: April 10, 2015, 09:19:34 am »
Hope all is well, just started harvoni yesterday,I take Benadryl and tramadol for a neck surgery I had was wandering if anyone knows if I can continue taking these medc while on harvoni or should I stop using them

Offline KimInTheForest

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Re: Just found out..advice needed please
« Reply #25 on: April 10, 2015, 09:45:16 am »
Hope all is well, just started harvoni yesterday,I take Benadryl and tramadol for a neck surgery I had was wandering if anyone knows if I can continue taking these medc while on harvoni or should I stop using them

Hi Joseph. :) I recall seeing a few references to Benadryl possibly being contraindicated with Harvoni (i.e., possibly reducing Harvoni effectiveness). Can't lay my hands on source of that info right at the moment. I had decided that when I start taking Harvoni, I would try to separate Benadryl by 12 hours - take Harvoni in mornings and Benadryl at bedtime if I need it for the Riba rash that may develop (since I also will be taking Ribavirin).

Good luck with your treatment! And may you soon be fully cured :)

Wellness to all,
Kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline dragonslayer

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Re: Just found out..advice needed please
« Reply #26 on: April 15, 2015, 04:27:40 pm »
Hi Joseph. :) I recall seeing a few references to Benadryl possibly being contraindicated with Harvoni (i.e., possibly reducing Harvoni effectiveness). Can't lay my hands on source of that info right at the moment. I had decided that when I start taking Harvoni, I would try to separate Benadryl by 12 hours - take Harvoni in mornings and Benadryl at bedtime if I need it for the Riba rash that may develop (since I also will be taking Ribavirin).

Good luck with your treatment! And may you soon be fully cured :)

Wellness to all,
Kim

That's what I did.. Took my occasional dose of Diphenhydramine for sleep at around midnight, and Harvoni around 10 am.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

 


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