Author Topic: relapse after 1 year (Read 82033 times)

audreywald · « **on:** June 07, 2016, 12:11:59 pm »

I took Harvoni and it ended last year, June 17th. I had no viral load from 5 weeks in. At 6 months I was still clear. The Dr's office said I was still clear and I would not be tested again unless I requested it. Well, I did request it. And after a year my viral load came back. Is this it? I've had this dragon around 40 years so my question is this: Has this happened to anyone else? Has anyone heard of any newer drugs?
Does this mean I am probably going to die of this illness?

gnatcatcher · « **Reply #1 on:** June 07, 2016, 12:34:40 pm »

Audrey, I'm so sorry that you have to deal with the dragon again, but this is not a death sentence. There are quite a few new treatments in the pipeline (others know the details; I trust they'll chime in). Your liver specialist is likely to recommend resistance testing to figure out what the best course of action will be.

KimInTheForest · « **Reply #2 on:** June 07, 2016, 12:35:03 pm »

So sorry to hear you relapsed, Audrey!

That is very unusual after reaching SVR24. Is there any chance it could be a lab error? Was it a high viral load, in the millions? Or low, in the hundreds? If it is very low, I would definitely want that retested.

As for new drugs, I am pretty sure there is now something available for treating Harvoni relapsers. But your doctor would probably want to test you first to see if you are resistant to anything, to see what new drug would be most likely to work on you.

Don't give up. I am sure you will be able to clear the virus. There are new developments weekly and monthly where Hep C treatments are concerned. It is a Gold Rush right now for the developers of Hep C cures.

kim

dragonslayer · « **Reply #3 on:** June 07, 2016, 02:11:47 pm »

Boy, that is some Horrible news... Its so extremely rare for this to happen after achieving SVR at the key checkpoints, I know how everybody feels reading this; it instantly makes every one of us feel instantly vulnerable regardless of our SVR status.

Its so rare, any chance of lab error, as Kim mentions? Anything which could cause reinfection? Relapse in this time frame is almost non existent..

Think about it.. HCV must replicate or die, basically... Replication manifests itself in a rapidly increasing Viral Load. HCV is not supposed to 'hide' like HIV does. So, to have 6 months of Undetecteds, and then to relapse at a year, makes one wonder about the mechanism that could cause this. How is it possible for one to have no detectable HCV rna at 6 mos, and then all of a sudden to develop one? Where's it been for all this time? If it were vital, it would have shown at 6 mos or before. Very confused....

Hoping that this was a lab error; please get back to us with updates, and with your recent viral load result.

Lynn K · « **Reply #4 on:** June 07, 2016, 02:14:38 pm »

Did you have a HCV RNA by PCR test or is it possible the lab may have done the antibody test?

If it was the antibody test we will always test positive for the antibodies to hep C but antibodies are not the virus. I am hoping your lab ran an antibody test in error or your doctor accidentally requested the wrong test for you.

Please let us know what the name of the test was. Also if it was the test for the virus the HCV RNA by PCR test you would have also had a viral load. Would you know what the viral load result was?

Hoping it was a lab error
Good luck
Lynn

audreywald · « **Reply #5 on:** June 07, 2016, 03:38:39 pm »

The viral load is now at 744,000 - I started before Harvoni at 16,000,000. Today she had a new blood draw to see if I really am Genotype1a, which I am unless the 3 Dr's before her were wrong. I am going to write down your questions.

But I will tell you this and I am sorry to tell you what we ALL should have been told. When I called "Support Path", after I told the nurse my sad story the first words out of her mouth were , That often happens with Harvoni. So I do urge all of you who were undetectable at 3 or 6 months to get retested at a year or so. My friend's doc in Arizona said he is not sure of the virus being cleared for sure for 2 years. I hope they didn't know that before they put all of us on this wonder drug.

jakas · « **Reply #6 on:** June 07, 2016, 04:08:30 pm »

THIS IS so so disturbing !

KimInTheForest · « **Reply #7 on:** June 07, 2016, 04:19:54 pm »

Quote from: audreywald on June 07, 2016, 03:38:39 pm

When I called "Support Path", after I told the nurse my sad story the first words out of her mouth were , That often happens with Harvoni. So I do urge all of you who were undetectable at 3 or 6 months to get retested at a year or so. My friend's doc in Arizona said he is not sure of the virus being cleared for sure for 2 years. I hope they didn't know that before they put all of us on this wonder drug.

Wow! I find this very interesting - and disturbing. It's as though there is no official data collection and tracking of Harvoni patients after SVR12 - at least not by Gilead or any medical organization for that matter. On my clinical trial, Gilead was not interested in any of my test results post SVR12. So they know nothing of my 10 months of unwellness post-tx even though I felt fine going in to treatment.

If post-Harvoni patients are being tracked, it must be very covertly. We only know about your story Audrey because you posted on this forum. I wonder how many others like you are out there, people who achieved SVR24 after Harvoni and then relapsed?

Harvoni is so new, and there is a tremendous amount of potential data collection post-treatment that is being missed and skipped altogether just because there is no centralized mechanism for recording it. The fact that each of our doctors is individually following us for a year or 2 means nothing if Gilead, FDA, AASLD, etc. don't know these outcomes and percentages.

I get my 1-year post-tx test in August.

kim

FutureThinker · « **Reply #8 on:** June 07, 2016, 04:35:16 pm »

Audrey, as a fellow Harvoni patient who just finished treatment 3 weeks ago, I am so very sorry to hear this news. From all I've read this is very unusual, but we certainly are still learning about these new DAAs. Please be sure to have your doctor, or you, tell the FDA & Gilead about this when appropriate. I am hopeful there is an error or maybe a mix up with your report. Glad you had your blood tested again -- please keep us posted!!! My prayers are for a better outcome. FT

Lynn K · « **Reply #9 on:** June 07, 2016, 04:35:39 pm »

Ok I don't have the links this second but I know the experts are tracking post treatment results and all I have seen is that the odds of relaps post SVR 12 are very low I can report that I was SVR 44 and I was a difficult case.

So sad to hear about this but the data on the situation here but let's stay calm will dig up reasearch later

lporterrn · « **Reply #10 on:** June 07, 2016, 04:41:16 pm »

This is shocking news. Let's start with your question,

Quote

Does this mean I am probably going to die of this illness?

No, it does not. First, your liver has had time to dial back some damage, and I would not be surprised if you went from stage 3 to stage 2 or 1 (I went from nearly a 3 to a 0 when I relapsed from PEG+RBV) And as was said, other good treatments are out and ahead.

The question is why. First, there is lab error, so a retest is necessary. It is possible that the 6 month post-test was wrong, and of all the explanations, that is the most likely.
Then the issue is a reinfection. I would ask for a genotype test.
The most unlikely scenario is that you have a condition such as cryoglobulinemia or HIV that would mask the 6 month post-test. Talk to your doc about these. If you don't have either of these, then I would look at the previous possibilities.

This is hugely disappointing, and I appreciate that you brought it to the Forum. Sadly, you won't be the only person to go through this, and the more we share our stories, the more we can help each other through these tough times.

KimInTheForest · « **Reply #11 on:** June 07, 2016, 04:50:58 pm »

Quote from: Lynn K on June 07, 2016, 04:35:39 pm

Ok I don't have the links this second but I know the experts are tracking post treatment results and all I have seen is that the odds of relaps post SVR 12 are very low I can report that I was SVR 44 and I was a difficult case.

I will be interested to see what you dig up, Lynn. Not that I doubt you. It's just that I am not aware of any mechanism by which any of our individual doctors are submitting our post-treatment data to some centralized medical authority that could then crunch numbers. Plus, some people's doctors follow up with their post-harvoni patients extensively for a long time, others never see their patients again. I have had 2 different liver specialists following me. One says I'm done after my 1-year SVR, the other says the 1-year SVR is irrelevant - if I'm cured at 6 months (which I was) I'm cured forever unless I get re-infected. So there is no consistency in how specialists monitor their patients. And as far as I know, my doctors are not submitting my data to anyone else.

I just don't see what mechanism exists for accurately calculating percentages of relapsers or percentages of people who develop severe chronic illness or cancer immediately after completing Harvoni treatment. All the info is anecdotal, but there is a growing volume on both of those counts.

kim

dragonslayer · « **Reply #12 on:** June 07, 2016, 06:27:09 pm »

Here is an interesting article that has been quoted in another thread on this board about delayed relapse:

http://jid.oxfordjournals.org/content/early/2013/11/14/infdis.jit543.full.pdf

Lynn K · « **Reply #13 on:** June 07, 2016, 07:43:30 pm »

OK so far I am looking at

National AIDS Treatment Advocacy Project

http://www.natap.org/

Real World Effectiveness of Ledipasvir/Sofosbuvir in Treatment-Experienced Cirrhotic Genotype 1 Patients with Chronic HCV: A Comparative Analysis of Gilead Sponsored Trials with 4 Real-World Cohorts

I am on the phone with support path getting in contact with a nurse

gnatcatcher · « **Reply #14 on:** June 07, 2016, 07:56:33 pm »

Dragonslayer, thanks very much for posting that link. So, it seems that HCV can hide successfully elsewhere in the body, and a relapse (as opposed to a new infection) can occur years into the future. It still makes sense to get treated and give the liver respite, even if the rescue turns out not to be permanent.

Lynn K · « **Reply #15 on:** June 07, 2016, 08:17:54 pm »

Yes great link
I just got off the phone with the Support Path nurse she said she is only aware of my and one other phone call about a long post treatment relapse and quoted the odds of late relapse as 1% but still not great to be in that category. She suggested searching on clinicaltrials.gov for long term trial results and also that Giliead has information as well.

She also mentioned they have one caller who is participating in a 3 year post treatment study so there are studies being conducted on us long term poet treatment. On issue is there are only a fer of you who have been off treatment for over a year we were the pioneers. The only ones with longer times post were in the clinical trials.

I discussed my history and she asked if it would be ok for Gilead to reach out tome for information as they may be interested in following my case because of my prior treatment history and history of cirrhosis.

But as far as Audrey's situation the nurse added there are new treatment coming so if this didn't work for her there are new treatments coming so hang in there.

But as I said so far what they are seeing is 1% relapse after SVR 12 and the clinical trial data was saying SVR 12 was 99.8% likely cured but unfortunately nothing is 100%

Best to all
Lynn

lporterrn · « **Reply #16 on:** June 07, 2016, 08:27:54 pm »

This is not a new phenomenon. Late relapses are rare, but they have been around for as long as we've been doing treatment. Researchers have been following post-treatment for many years (I am in a post-treatment study), and when you see a stat quoted such as you have a 100% of a durable SVR following 24 weeks, often what you see is rounding up from what really is 99.8%

However, keep in mind that we don't know if this is a relapse, a reinfection, or a lab mistake.

Lynn K · « **Reply #17 on:** June 07, 2016, 08:37:22 pm »

and one more

http://www.hepatitiscentral.com/news/after-being-cured-can-hep-c-return/

Sustained Virologic Response

The benchmark of Hepatitis C treatment, a sustained virologic response (SVR) is as close as we can get to a cure for this disease. SVR is declared if the person’s viral load is non-detectable six months after administration of the last dose of Hepatitis C medication.

Achieving a sustained virologic response usually means the medicine eliminated all traces of Hepatitis C from the body. However, it is possible that a tiny bit of the virus hid and replicated after treatment ends. If this were to happen, it would usually do so within six months – thus the standard of defining SVR at six months. The ability of Hepatitis C viral particles to hide and wait longer than half a year to replicate is slim, but not impossible.

SVR means the virus is probably permanently gone. Hepatitis C is highly unlikely to return after a person achieves SVR, but:

studies have shown that with a six-month SVR, relapse occurs in 1 to 2 percent of patients.
the return of Hepatitis C after living one year without the virus is even rarer.

After one year of being free from the virus, the odds of Hepatitis C eradication permanence are much better. In fact, many medical providers stop checking for the presence of Hepatitis C after one year of non-detectable viral particles.

Lynn K · « **Reply #18 on:** June 07, 2016, 08:38:56 pm »

Quote from: lporterrn on June 07, 2016, 08:27:54 pm

This is not a new phenomenon. Late relapses are rare, but they have been around for as long as we've been doing treatment. Researchers have been following post-treatment for many years (I am in a post-treatment study), and when you see a stat quoted such as you have a 100% of a durable SVR following 24 weeks, often what you see is rounding up from what really is 99.8%

However, keep in mind that we don't know if this is a relapse, a reinfection, or a lab mistake.

Excellent point still need more testing to be sure what has happened

KimInTheForest · « **Reply #19 on:** June 08, 2016, 01:20:25 am »

Thanks you Lynn, Lucinda and Paul for the info and article links related to this subject.

kim

brie41 · « **Reply #20 on:** June 08, 2016, 07:58:30 am »

HI Audrey,

I am so sorry to hear about your relapse. I truly can't imagine how terrible that must have been for you to find this out. If Lynn is right and you are in the 1% that is exceptionally cruel. I wish you all the best and thankfully there are new drugs here and coming that will cure you!! Brie

morab · « **Reply #21 on:** June 08, 2016, 09:16:39 am »

Audrey
I am so sorry to hear this news. Please keep us posted on your updates!
You have so much moral support here on the forum, and hopefully you can be one of the first to get one of the newest drugs in the near future.
Morab

slats1056 · « **Reply #22 on:** June 08, 2016, 09:46:53 am »

Audrey,
That is bad news , but not a death sentence. Keep Your chin up and keep the faith.
The new Meds are promising. So sorry to hear about Your relapse.

I have been wondering about the process for following up results post SVR. My Drs. have no idea about any studies and are not providing any info. to anyone post treatment!! While SVR12 is considered undetected, SVR24 is considered cured. Most do not realize that it is not 100%. Joy at defeating the Dragon can cloud the reasoning that it is not a guaranteed cure. Though many are. The medicines are truly amazing, but there is still margin for error.
Has anyone been contacted about follow up post treatment? Or has it come about by the patient contacting the Pharmaceutical Companies?
The doubt in the back of ones mind is exacerbated by news like this, however , I am still hopeful that all of us that are in bad shape post treatment are still improving!
HERE IS TO THE FUTURE! ONWARD AND UPWARD ALL. YOU CAN'T KEEP A GOOD HEPPER DOWN!

AussieRosa · « **Reply #23 on:** June 08, 2016, 08:10:10 pm »

Dear, Audrey. I'm so sorry to hear about this terribly disapointing news. After 1 year you must have been so relaxed and comfortable in the knowledge that you were cured, only to have the rug pulled out from under you. A terrible feeling I can only try to imagine. Try to remain hopeful regarding all the new drugs that will be addressing relapse and resistance. Surely there will be a permanent cure for you among them. Wishing you courage and the best of luck!

I fightis thetitis · « **Reply #24 on:** June 09, 2016, 08:03:28 am »

Hey Audrey,
Hang in there as the new meds in the pipeline from Merk seem very promising.
My Dr. mentioned that even after 24 weeks of Harvoni tx, which I had, does not ensure the meds killed all of the virus completely. especially after 40+ years of living with hep.
Further whatever (and if) virus exist it may be up to our immune system to wipe out any remaining virus.
He suggested I boost my immune system with exercise and diet. even suggested Mediterranean diet.

Along with the Ns5a gene that appears to factor in relapse.
Bottom line is still a lot of guess work.

Best to you!!

FutureThinker · « **Reply #25 on:** June 09, 2016, 12:33:46 pm »

I did a brief scan of the literature on delayed relapse and there just isn't much on this yet, as Harvoni has not even been on the market 2 years yet. There just hasn't been enough time for data to be collected w/ DAA treatment on this. Being the pioneers (I prefer that term vs. guinea pigs) in this phase of HCV treatment development, this is the kind of info that will be coming out over the next several years. We're just going to have to wait and see (and pray). All of us need to take the lead in making sure either our doctors, or us, inform the FDA on these events. Anyone have the contact info?

The article cited by dragonslayer in this thread is from 2013 and while interesting, an awful lot has transpired with available drugs since that time. The 2 articles I did read (found one from this year in Clinical Infectious Diseases, 1-19-16) show a very, very low risk of delayed relapse, 1% or less, so that is good news! It appears this virus might be harbored elsewhere in our bodies other than the liver, so that will be a big part of research, I am sure.

Audrey, I hope you'll be getting RAV testing, as this is an important piece of the puzzle. This kind of news scares all of us to death...... but the reality is none of the treatments thus far are 100% effective....... yet. I am confident we are headed in that direction.

Please keep us posted, Audrey, and you are in all of our thoughts! Thank you again for posting, FT

FutureThinker · « **Reply #26 on:** June 09, 2016, 12:40:34 pm »

Another thought: Some of us are getting VL tests at various time lines after SVR, others are not. Until this issue of delayed relapse is figured out, maybe we all should be getting VL tests every 6-12 months?? For how many years, the cancer standard of 5 years? Seems at least annually may be warranted, until this issue is understood.

I appreciate your thoughts and thanks, FT

fourlocos · « **Reply #27 on:** June 09, 2016, 12:57:26 pm »

Audrey I am really sorry to hear you relapsed. I hope that the newer drugs do it for you. I am 16 months post treatment and will be tested again in November. Curious to see what that shows. I am glad the moderators contacted Gilead and have provided you and all of us with more information.

Lynn K · « **Reply #28 on:** June 09, 2016, 11:24:33 pm »

Quote from: FutureThinker on June 09, 2016, 12:33:46 pm

Anyone have the contact info?

Got this from the Harvoni prescribing information sheet:

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

FutureThinker · « **Reply #29 on:** June 10, 2016, 12:22:42 am »

Thanks very much, Lynn. I'm going to print that off for my files! FT

audreywald · « **Reply #30 on:** June 10, 2016, 01:26:07 pm »

For those of you who asked, my test was the hcv/Rna, pcr. I went in six months from 0 to 744, 000. Which I guess was quite alarming - that it shot up so fast. They have given me another geno test which I THINK is even more precise. I will have more answers in a week or two.
I am scared to death. I have another illness called gastroparesis which means that the food passes through my stomach at a very slow pace, which means I am always nauseous. They are trying to match me up once they get whatever info they want with the right drug. IF Medicare will pay. But what is the point of being treated for the gastro disease if I'm going to be nauseous all the time anyway from the new med I get or from the Hep C itself. I have had it 40 years
Wouldn't that just suck, to go thru the peg intron (12 years ago, and they took me off after 13 weeks) then wait all these years for a better chance, do 6 months of Harvoni, and then the companies that pay give up on me. I am getting old but I think I need to be here for awhile if possible. I have a 12 year old grandson with severe autism. I take him and his 5 year old pistol of a brother every week. I also have a 23 year old grandson who has been missing 2 and a half years whom I raised who has a lot of mental health issues. A lot of people think he is still alive. What if he one day comes home and I am deceased because I did not fight with everything I've got> I am also married to a good man, going on 21 years of marriage.

I have to try to be strong and face this dragon. We all do. Please feel free to reply to me. I live in a small town in Arkansas , the heart of the Bible belt and it's very lonely here for me.

Lynn K · « **Reply #31 on:** June 10, 2016, 01:35:41 pm »

Hi so sad for your relapse just wanted to let you know that a large increase in virus in a short period of time is not uncommon that is the nature of any virus that is their goal to reproduce as rapidly as possible. When I relapsed on Sovaldi Olysio my prior treatment viral load was 2 million I was not detected at EOT but 12 weeks later when I retested my viral load was at 2.4 million. They're working on finding new medicines all the time I am sure they will find something that works for you soon

audreywald · « **Reply #32 on:** June 10, 2016, 01:39:36 pm »

There is NO chance of my being reinfected by risky behavior. None. And after 40 years, I am pretty savvy as to what might cause it.

Lynn K · « **Reply #33 on:** June 10, 2016, 01:52:28 pm »

I don't think anyone thinks that I hope I didn't say something to make you think I felt that way. I hope your doctors can figure out the cause for your relapse. Are they testing you for resistance factors?

audreywald · « **Reply #34 on:** June 10, 2016, 02:36:57 pm »

Quote from: Lynn K on June 10, 2016, 01:52:28 pm

I don't think anyone thinks that I hope I didn't say something to make you think I felt that way. I hope your doctors can figure out the cause for your relapse. Are they testing you for resistance factors?

Oh no, Lynne, my nurses had to ask that same question. 40 years ago, yes, that behavior is what got me here. But that was in a galaxy far, far away, in another life. The life of the young and foolish, of which I was both.

It is very important that those of you who were on Harvoni contact Support Path. Gilead wants to know everything that is happening to us.

morab · « **Reply #35 on:** June 10, 2016, 02:49:39 pm »

audrey
Thanks for keeping us all informed of the many possibilities! I think it is going to take those of us taking these drugs to do the reporting, as from what I have experienced, the specialists are not!
Do you go to Little Rock to see a specialist? I am in NW Arkansas! I hope you don't have to drive that far!
I told my GP who is following me about your case, he agreed that he would watch me much closer after hearing this news and do followup every year for many years to come checking for any relapse.
I hope Gilead will help you out with the newest best drugs hitting the market soon!
Please keep us posted!
Morab

audreywald · « **Reply #36 on:** June 10, 2016, 04:50:36 pm »

I go to Jonesboro for my specialist. That is my Nurse specialist. Don't get to see the Dr. anymore. I live in Northeast Arkansas, at least I think it is. I live in Wynne. I have been here 7 years but I am from Chicago. Have not gotten comfortable here. But my daughter and grandkids live here so here I will stay. But this is not my home. I am a stranger in a strange land and have not been able to connect with anyone. I guess you can tell I am not happy here.

morab · « **Reply #37 on:** June 10, 2016, 05:06:52 pm »

Oh audrey
The South can be really hard to get used to if you are not born here. I have relatives in Chicago and spent many childhood vacations in Chicago, then I did a few Art show's there and had a blast staying with my cousin and riding the L train.
Hang in there and I hope you can make a new friend in your area! Keep us posted on what you find out about your relapse!
Cheering for you!
Morab

brie41 · « **Reply #38 on:** June 10, 2016, 06:21:13 pm »

Hi Audrey,

At least you have friends here, always!! You have a full plate for sure, and I truly hope you find out what happened to your grandson. How awful and I am sure not knowing is the hardest part. They say God does not give us more than we can handle, but that is questionable sometimes. Please keep the faith that the next treatment will cure you for good. Take care. Brie

gnatcatcher · « **Reply #39 on:** June 10, 2016, 07:13:15 pm »

Audrey, does your Nurse specialist understand the importance of your having resistance testing so that your next treatment won't contain a medicine that your body would resist? Does he or she consult with a hepatologist, perhaps by phone or email? As with doctors, NPs can vary widely in knowledge and experience -- I hope you've got a good one who keeps abreast of the latest advances and treatment recommendations.

You've got plenty of reasons to cultivate your will to live, even if you're being asked to bloom where you weren't planted. Wishing you WELL,

Gnatty

dragonslayer · « **Reply #40 on:** June 10, 2016, 07:46:39 pm »

Folks,

Curious about the role of resistance. If one is resistant to a medication, how is it possible that one can be undetected for nearly a year as a result of taking this medication, before it becomes detected again? Wouldnt that point to something else at work other than drug resistance?

gnatcatcher · « **Reply #41 on:** June 10, 2016, 09:03:29 pm »

Good point, but I was looking ahead to her future treatment. Now that resistance testing is becoming more widely used, surely someone who is having to go through yet another treatment would be best served by having anything ineffective ruled out.

drummerman · « **Reply #42 on:** June 12, 2016, 12:05:08 am »

Quote from: morab on June 10, 2016, 02:49:39 pm

audrey
Thanks for keeping us all informed of the many possibilities! I think it is going to take those of us taking these drugs to do the reporting, as from what I have experienced, the specialists are not!
Do you go to Little Rock to see a specialist? I am in NW Arkansas! I hope you don't have to drive that far!
I told my GP who is following me about your case, he agreed that he would watch me much closer after hearing this news and do followup every year for many years to come checking for any relapse.
I hope Gilead will help you out with the newest best drugs hitting the market soon!
Please keep us posted!
Morab

Just curious... what specialist in LR are you referring to?? I never could find one. All of the hepatologists at the med center are too busy doing transplants and I never got to see one face to face... although some times I did see their initials on some of my charts.

Eventually just wound up with a gastroenterologist and went with viekira.

Would be interested to know if you found a hepatologist that will treat hcv patients in LR.

dm

morab · « **Reply #43 on:** June 12, 2016, 08:01:16 am »

I am in NW AR and just assumed there would be a Hep C specialist in Little Rock. You would think there would be someone there, with the University Hopsitals there. I have a sister with NASH who see's someone in Little Rock, not sure who she see's though.
I am will ask her who she see's may just be seeing a GI person and go there for her testing.
Will get back with you on that one.
My sister who is going there for testing is loosing her mind, her liver is bad and vitamin level's so low so not sure how much true information I will get out of her.
It sounds like most of us in the US see a GI person, mine in NW AR did not schedule any followup nor future appointments and left me hanging. I am lucky to have a really fantastic General Practitioner.
Morab

drummerman · « **Reply #44 on:** June 12, 2016, 10:24:58 am »

Quote from: morab on June 12, 2016, 08:01:16 am

I am in NW AR and just assumed there would be a Hep C specialist in Little Rock. You would think there would be someone there, with the University Hopsitals there. I have a sister with NASH who see's someone in Little Rock, not sure who she see's though.
I am will ask her who she see's may just be seeing a GI person and go there for her testing.
Will get back with you on that one.
My sister who is going there for testing is loosing her mind, her liver is bad and vitamin level's so low so not sure how much true information I will get out of her.
It sounds like most of us in the US see a GI person, mine in NW AR did not schedule any followup nor future appointments and left me hanging. I am lucky to have a really fantastic General Practitioner.
Morab

Well, like I said, when I was being treated at UAMS , I never saw a specialist, but did see his initials on papers at times. Never met him. Only saw a nurse.

Round 2 - I had a gastro. Guess its all you can get in this area.

dm

morab · « **Reply #45 on:** June 12, 2016, 10:40:37 am »

Drummerman
Are you going to be retested after your 1 year mark EOT? I sure will after reading of relapses.
Morab

dragonslayer · « **Reply #46 on:** June 12, 2016, 02:50:37 pm »

I'm about 1.5 yrs post treatment. I was undetected at 48 wks post, but Id be lying if I said the results posted by the op didnt shake me up... Given the incredibly small odds related to delayed relapse, my plan is to continue to get my AST/ALT done for my annual physical in january, and dont see a need to get a yearly viral load done unless either of these liver function tests show a spike. Those tests were the ones to tip I had the disease initially, and so long as they stay normal, Im not going to obsess about it.

FutureThinker · « **Reply #47 on:** June 12, 2016, 03:11:54 pm »

Hi all, this topic of delayed relapse is definitely one for all of us to discuss with our medical personnel. It just may make all of us make it a priority to get an annual physical and blood work, in which ALT/AST will be a part. Dragonslayer is right in that those are the numbers that send up the red flag.

When I was diagnosed in '11 I had been a bit lax in getting myself in for my annual physical ---- actually, it was a toenail fungal infection that was the primary reason I went in, and the blood work for the meds to treat that showed the elevated liver enzymes. The rest is history. The annual blood work doesn't seem to be an option anymore, at this point. FT

beto · « **Reply #48 on:** June 12, 2016, 06:10:45 pm »

Just a word of caution.

ALT/AST is no doubt the best cheap and easy test for red flagging HCV. However, there are other things that can raise these numbers...so, if they come up higher on a test best not to assume too much. We all know what it is like to fear the worst. We all kinda wrote that book. I agree, it is damn time we see more attention from the medical and health community tackling the crap we all do not want to deal with. Relapse, scary side effects and post SVR difficulties even if rare. These subject don't sell pills, however, they especially can not be ignored now. right now!!! not five years from now. If I knew everything I know now a year ago, I would persue these meds with the same power of conviction as I did when Harvoni was an omnipotent deity. But we the pioneers of these amazing but not completely understood drugs, owe it to those in the wings with stars in there eyes to get this discussion beyond our tight forum community.

Audry- My heat goes out to you as well. Hang around and let us know how you are doing. Everyone on this forum is pulling for you. Let's get you undetected again for keeps. Peace...

I fightis thetitis · « **Reply #49 on:** June 12, 2016, 07:37:17 pm »

Audrey,

My GI is in Orange California and I asked the head nurse on Friday if they have seen relapse a year post TX.
Of the 1,200 Harvoni patients the 3 GI's have had from their office since 10-2014, approx 300 are 52 weeks post TX. There was one relapser who was on 24 week Harvoni only tx and that patient confirmed she had not been compliant through the 24 week treatment.

That patient had cut the Harvoni into two doses and took them 1-hour apart from each dose. also was not consistent with time of days.
The patient was UD @ 36 weeks post and positive at 52 weeks post.

Nurse had no explanations or theories if this was a factor with their relapse.
So.... to see if there is any connection here and purely from a Sherlock Holmes type curiosity, were you always consistent when you took your Harvoni?

I wonder if any other relapsers can chime in to see if a possible time of day, consistency ect issue, just to rule that notion out.

Of course the conventional is to assume there is no correlation between relapse and time of day or compliance post 52 week EOT. But doesn't hurt.

I hope you are feeling better and best of luck to you!! Friends, sympathizers and love here!

Best always,
Greg

drummerman · « **Reply #50 on:** June 12, 2016, 09:00:58 pm »

Quote from: morab on June 12, 2016, 10:40:37 am

Drummerman
Are you going to be retested after your 1 year mark EOT? I sure will after reading of relapses.
Morab

At this point I was planning on waiting 5 years. But , if we see more and more relapses then I will reconsider.

dm

Baxter · « **Reply #51 on:** June 13, 2016, 04:40:00 pm »

Quote from: I fightis thetitis on June 12, 2016, 07:37:17 pm

Audrey,

My GI is in Orange California and I asked the head nurse on Friday if they have seen relapse a year post TX.
Of the 1,200 Harvoni patients the 3 GI's have had from their office since 10-2014, approx 300 are 52 weeks post TX. There was one relapser who was on 24 week Harvoni only tx and that patient confirmed she had not been compliant through the 24 week treatment.

That patient had cut the Harvoni into two doses and took them 1-hour apart from each dose. also was not consistent with time of days.
The patient was UD @ 36 weeks post and positive at 52 weeks post.

Nurse had no explanations or theories if this was a factor with their relapse.
So.... to see if there is any connection here and purely from a Sherlock Holmes type curiosity, were you always consistent when you took your Harvoni?

I wonder if any other relapsers can chime in to see if a possible time of day, consistency ect issue, just to rule that notion out.

Of course the conventional is to assume there is no correlation between relapse and time of day or compliance post 52 week EOT. But doesn't hurt.

I wonder what in the world inspired her to do that? Maybe she was one of those who had unpleasant sides, and thought this might minimize them.

I suppose she assumed it didn't make any difference - and in all honesty, it probably didn't - but still! If the prescribing sheet told me take each pill while sitting cross-legged and wearing a flowerpot on my head, I'd probably take all 84 pills while sitting cross-legged and wearing a flowerpot on my head. No matter how silly it seemed. Why not?

Of the 1200 other patients (well, 1199 other patients) who've cycled through that clinic in the last 18 months, you have to assume that at least some of them probably also strayed outside the bounds of compliance, and some of them perhaps much more than she. Stands to reason that there had to be someone in a group that size who missed a dose or two, or drank alcohol, or took drugs, or whatever. So while her odd habit could theoretically have been a factor, it would be hard to point your finger at that and say, "ah-ha! that's it!"

My guess is it was just luck of the draw Most people win, but a tiny percentage get that really short straw. It was just her lot to get the short one, unfortunately.

Baxter · « **Reply #52 on:** June 13, 2016, 04:41:56 pm »

Quote from: beto on June 12, 2016, 06:10:45 pm

Just a word of caution.

ALT/AST is no doubt the best cheap and easy test for red flagging HCV. However, there are other things that can raise these numbers...so, if they come up higher on a test best not to assume too much.

No, but at least it's an indicator. A canary in a coal mine. Just something to let you know you need to dig a little deeper.

I fightis thetitis · « **Reply #53 on:** June 13, 2016, 07:57:23 pm »

Baxter,

Well said and I agree with your take.
With the avail info we can only draw assumptions as to why she chose to be non-compliant with TX.

As to what is the actual cause of relapse, I suspect many of us look forward to the day that question is answered.

Blessings,

G

Lynn K · « **Reply #54 on:** June 13, 2016, 09:34:12 pm »

Yeah
I was debating if I wanted to get tested at 24 months I guess I am more leaning on asking for a 2 year test now in light of this situation

jakas · « **Reply #55 on:** June 14, 2016, 01:37:04 pm »

This is the first case I have heard of

MelHu · « **Reply #56 on:** June 21, 2016, 01:13:30 pm »

Hey Audrey
Sorry to hear of the relapse as I'm sure it's disappointing and discouraging, but I too worry about that. I read somewhere that someone with early stage multiple myeloma (bone marrow cancer) relapsed. I've been monitored for that since 2003. So that thought is constantly on my mind. But I have to say that if SVR lasts 6 months or 5 years, at least our liver gets a break. In the meantime we can all look forward to the future of these treatments.
Paul thanks for that article and as always your input and the input of Ms Porter, Lynn, Kim and all the regulars I feel grateful for the comments and advice. Money can't buy that!

GLCII · « **Reply #57 on:** June 26, 2016, 08:13:25 pm »

I wasn't expecting to ever read something like this. Needless to say, it's blowing my mind. Talk about our worst fears coming true.

Is it possible that this is a case of reinfection?

With the fast replication of the Hep C virus, I would think it would have popped its ugly head up the first chance it got after the Harvoni left the system. After the three interferon treatments I did, the virus always popped up within the first two weeks.

Gileads commercials are claiming cured after 90 days of SVR. For the virus to show up over a year after treatment ended just doesn't seem right. I hope it's not right.

Again, could this be a case of reinfection? Maybe a pair of missed clippers and old tooth brush, etc? Even that would be slim considering the virus would die after so long of just sitting there.

I don't want to be insensitive but I hope there is more to this story than it just came back.

beto · « **Reply #58 on:** June 27, 2016, 01:31:47 pm »

GLC, All,

Disconcerting information true, however, there always was a likelyhood of this type of thing happening. I have a friend that was diagnosed with geno 3 around the same time my 1A turned up 20 years ago when they renamed nonAnonB. She did just 6 months of interferon/riba. Had sides that were not that bad and was cured...zero liver damage. I just ran into her and she is still hep-c free after more than 15 years (her vl was 13 million before treatment). I post this because it shows that cures happened even with the old inferior drugs and stay. she was not alone. For the few unfortunates that relapse or reinfect...they are going to be cured. For a great majority of us that reached SVR on harvoni or other DAA's we will stay in the clear...I feel pretty certain of that. We however are the frontlines and we will have to have patience I guess.

There is a lot of attention on these drugs and hep c now whereas, there was not before. All this attention will keep the dragon slaying machine fine tuning cures for those with stubborn infections. Let's all stay strong and keep up the fine support for everyone on this mission. We all got this. All of us.

AussieRosa · « **Reply #59 on:** June 27, 2016, 09:17:31 pm »

Thanks for those words of reason and calm reassurance, Beto. I, too, am certain that our cures are real for at least 99% of us. We know from one of the links to a study posted above that for a rare tiny percent it has always been true that there were cases of delayed/late relapse. It stands to reason that the mechanism of action in those late relapses (such as extra-hepatic reservoirs of the virus, mutations to non-replicative strains that mutate back into replicative ability) will remain even with these new drugs. With odds of less than 1% that we'll be a late relapser, I think we can rest easy. Although, I know it's human nature to fear the unkown.

jakas · « **Reply #60 on:** June 29, 2016, 02:26:06 pm »

COPY AND PASTE;

SVR means Sustained Viral Response.

When we stop the medications if there is no virus left you will remain undetected and this is SVR.

Undetected at 4 weeks post finishing - SVR4 - predicts a 96% chance of permanent cure

Undetected at 12 weeks post finishing - SVR12 - predicts a 99% chance of permanent cure

Undetected at 24 weeks post finishing - SVR24 - predicts a 99.9% chance of permanent cure

So if you finish treatment and there is virus left it will grow back, your viral load will increase again and you relapse.

If we can not detect any virus you are at SVR and the longer that remains the case the more certain we are it is permanent.

Patients reaching SVR24 post interferon/ribavirin have remained virus free for 18 years of follow up.

With DAAs we don't have that length of follow up but basically with no drugs to hold the virus off if it is still present it grows back, and if it is not still present it can not grow back because it is gone.

You can be confident at SVR4, really confident at SVR12 and pronounce yourself cured at SVR24. There is a strong suspicion that anyone relapsing after SVR24 is not a relapse, but rather a reinfection because if the virus has had 24 drug weeks to grow back and has not.....

audreywald · « **Reply #61 on:** June 29, 2016, 03:32:00 pm »

I have been looking and looking for this site. I am so glad I finally found you all.

Guess what? On May 26th is when I had my viral load taken and it came back as 744,000. Everyone (including all the professionals working with me) said they did not think this had ever happened. So I had my genotype rechecked and they rechecked my viral load at the same time, which I did not know about until they called me recently. Well, guess what? It came back as 0 - so a lab mistake was made. I am going next week to the best lab, I think one that does its own testing then and there. My doc says this result will be definitive.

So for those of you who got worried that this could possibly happen to them, there MAY be no reason to worry.

I will let you know as soon as I do. Thanks so much for all the feedback.

KimInTheForest · « **Reply #62 on:** June 29, 2016, 03:37:14 pm »

Quote from: audreywald on June 29, 2016, 03:32:00 pm

I have been looking and looking for this site. I am so glad I finally found you all.

Guess what? On May 26th is when I had my viral load taken and it came back as 744,000. Everyone (including all the professionals working with me) said they did not think this had ever happened. So I had my genotype rechecked and they rechecked my viral load at the same time, which I did not know about until they called me recently. Well, guess what? It came back as 0 - so a lab mistake was made. I am going next week to the best lab, I think one that does its own testing then and there. My doc says this result will be definitive.

So for those of you who got worried that this could possibly happen to them, there MAY be no reason to worry.

I will let you know as soon as I do. Thanks so much for all the feedback.

WOW! That would be fantastic if it is all just a lab mistake, Audrey. And it would certainly make the most sense. But what a mistake! That lab really needs to up its game.

Good luck on your next test at different lab, Audrey. I have a good feeling about this!

kim

gnatcatcher · « **Reply #63 on:** June 29, 2016, 03:47:17 pm »

Audrey, I'm elated at your latest result. Fingers crossed that the definitive test confirms this one and the SVR12 and SVR24.

Gnatty

Lynn K · « **Reply #64 on:** June 29, 2016, 04:16:29 pm »

Dancing in the street! That is what we have all been hoping for that it was a HUGE mistake!

SVR SVR SVR fingers, toes , eyes crossed!

FutureThinker · « **Reply #65 on:** June 29, 2016, 07:38:12 pm »

Audrey, you got the conga line going again!!! I am so relieved this appears to to be a lab error. Thrilled to hear you are likely UD!! Keep us posted and fingers still crossed, FT

AussieRosa · « **Reply #66 on:** June 29, 2016, 10:00:17 pm »

This is fantastic news. You must be so relieved, AudreyWald

Mila · « **Reply #67 on:** June 29, 2016, 10:15:09 pm »

Quote from: KimInTheForest on June 07, 2016, 04:19:54 pm

Wow! I find this very interesting - and disturbing. It's as though there is no official data collection and tracking of Harvoni patients after SVR12 - at least not by Gilead or any medical organization for that matter. On my clinical trial, Gilead was not interested in any of my test results post SVR12. So they know nothing of my 10 months of unwellness post-tx even though I felt fine going in to treatment.

If post-Harvoni patients are being tracked, it must be very covertly. We only know about your story Audrey because you posted on this forum. I wonder how many others like you are out there, people who achieved SVR24 after Harvoni and then relapsed?

Harvoni is so new, and there is a tremendous amount of potential data collection post-treatment that is being missed and skipped altogether just because there is no centralized mechanism for recording it. The fact that each of our doctors is individually following us for a year or 2 means nothing if Gilead, FDA, AASLD, etc. don't know these outcomes and percentages.

I get my 1-year post-tx test in August.

kim

Hello This is my first time posting here & don't think I quite have it down..I was officially diagnosed last year...in response to Harvoni support path, I was on the phone with a harvoni nurse last week discussing side effects and she told me flat out that the nurse line was there to help us but also data collection because they "really don't know very much about it" and are depending on us the user to inform them what we're going through. My impression was they know only slightly more than we do about side effects.

morab · « **Reply #68 on:** June 29, 2016, 10:16:14 pm »

Audrey. Thank god for happy mistakes!
Morab

FutureThinker · « **Reply #69 on:** June 30, 2016, 01:07:51 am »

Mila, you are right in that we are the pioneers in this new DAA era. It is a hard decision. These DAAs are so much more effective and tolerable than any of the previous treatments available. Some of us have had this disease for 3-4 decades and it's eating away at our livers, quality of life and future. This was the most pressing aspect for me starting treatment, the lack of long term data on these drugs. But it was try it now or wait while the detrimental effects continued. It wasn't an easy decision.

We all just need to be diligent in getting relevant info to the people that need to know our experiences. As for Audrey, I am so very happy that her story appears to be a lab error. FT

Mila · « **Reply #70 on:** June 30, 2016, 02:49:05 am »

Great news for Audry!
I'm sure that eases some minds. Also its good to remember that when they say "97%" that means 3% are the other. Sucks to think it could be you.

It was a real eye opener talking to the Harvoni nurse as it made me realise that even though I am not in the first user group I am still essentially part of an experiment. Its strange to get my head around that as I am not a big fan of pills and don't necessarily have a trust of drug companies. Its been very reassuring today to read all of these forums and knowing that everybody here is experiencing it too. It seems each in our own ways.

So in advance...Thanks everyone for sharing. It really does make a difference.
~Mila

Philadelphia · « **Reply #71 on:** June 30, 2016, 06:35:52 am »

My fingers are crossed that it is a mistake. Sounds promising!

audreywald · « **Reply #72 on:** June 30, 2016, 12:00:39 pm »

How do I become friends with some of you?

Mila · « **Reply #73 on:** July 01, 2016, 04:13:51 pm »

click on their name and then add to buddy list I'm assuming.

dragonslayer · « **Reply #74 on:** July 01, 2016, 06:14:48 pm »

Great friggin' news!!!!!!!!!!!! So happy for you. And, so happy for us!!! Everybody, take a deep breath; it aint gonna come back to bite us after all..

morab · « **Reply #75 on:** July 01, 2016, 07:06:52 pm »

fantastic news Audrey! I do believe we are all your friends!
You can go to a person's page by clicking on them, add to buddy list although I have not really figured out what that does.
Please keep us posted on how you are doing! I plan to follow this site for many years to come! This has been my go to place for several weeks now and a life saver as far as moral support!!!!
morab

brie41 · « **Reply #76 on:** July 01, 2016, 07:13:48 pm »

Hi Audrey,

Sometimes all we need is a chance, and I would say you got that!!! I will be thinking positive thoughts that it was just a mistake and you are svr for good!! Hang in there! Brie

Bucky · « **Reply #77 on:** July 03, 2016, 10:57:15 am »

Quote from: Lynn K on June 13, 2016, 09:34:12 pm

Yeah
I was debating if I wanted to get tested at 24 months I guess I am more leaning on asking for a 2 year test now in light of this situation

Hello Lynn, How you doing?
I haven't been here in a while and was kinda stunned that a few people were relapsing after a year. I had complete Hepc labs at one year and there was no trace of it. When I see my Gastro in August (2 year mark PT) I am going to get another set of tests run. I don't anticipate a problem since my liver panels have been perfect since EOT.
Bucky

dragonslayer · « **Reply #78 on:** July 03, 2016, 06:50:56 pm »

Quote from: Bucky on July 03, 2016, 10:57:15 am

Hello Lynn, How you doing?
I haven't been here in a while and was kinda stunned that a few people were relapsing after a year. I had complete Hepc labs at one year and there was no trace of it. When I see my Gastro in August (2 year mark PT) I am going to get another set of tests run. I don't anticipate a problem since my liver panels have been perfect since EOT.
Bucky

Hey Bucky..... Well, Audrey isnt one of them since it turned out to be a false alarm.. Are there others on Harvoni reporting 1 yr delayed relapses? I know that statistically, it happens, but only to the tune of about 1% or less.

dragonslayerinprogress · « **Reply #79 on:** July 04, 2016, 03:46:48 am »

Crossing fingers and hoping for your results Audrey.
As far as the 1%....that is a lot if you do the math and how many people have the virus.

Lynn K · « **Reply #80 on:** July 04, 2016, 05:46:13 am »

Quote from: Bucky on July 03, 2016, 10:57:15 am

Hello Lynn, How you doing?
I haven't been here in a while and was kinda stunned that a few people were relapsing after a year. I had complete Hepc labs at one year and there was no trace of it. When I see my Gastro in August (2 year mark PT) I am going to get another set of tests run. I don't anticipate a problem since my liver panels have been perfect since EOT.
Bucky

Hey Bucky how are you doing?

I was tested at 44 weeks post as it was time for my annual with my liver Doctor. I was still SVR my ALT and AST were both normal range, my AFP was just slightly above normal at 10 point something so lowest since it has been being tracked, and my platelets were up to 110.

As Dragonslayer said it does look like Audry thankfully was a false alarm due to a lab error. I think I would be looking for a lab technician to kick their butt

Best to you
Lynn

dragonslayer · « **Reply #81 on:** July 04, 2016, 09:18:32 am »

Quote from: dragonslayerinprogress on July 04, 2016, 03:46:48 am

Crossing fingers and hoping for your results Audrey.
As far as the 1%....that is a lot if you do the math and how many people have the virus.

This '1%' is an oft quoted number for which I havent found much treatment specific/genotype specific information. Suffice it to say that for any given person, odds are very small that it will happen to them. Seems odds for lab error may be higher than odds for delayed relapse!

Lynn K · « **Reply #82 on:** July 04, 2016, 11:09:08 am »

I have seen the number that if you make 12 weeks SVR the odds of cure are 99.8% so wouldn't that lead to the thought 0.2% odds of relapse if SVR12 is acheived?

However statistical math and calculation of odds is not an area I know anything about.

dragonslayer · « **Reply #83 on:** July 04, 2016, 03:50:59 pm »

Quote from: Lynn K on July 04, 2016, 11:09:08 am

I have seen the number that if you make 12 weeks SVR the odds of cure are 99.8% so wouldn't that lead to the thought 0.2% odds of relapse if SVR12 is acheived?

However statistical math and calculation of odds is not an area I know anything about.

Hi Lynn,

If you check the table in this article concerning Predictive value of SVR, http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf, you see that 99.8% is the value given to what I interpret to be the positive predictive value of SVR12 toward achieving SVR24...

But if we're talking Late Relapse of a year or more, Im not seeing, at least in that oft quoted article (by me! lol), any reference to delayed relapse ppv.

It does say in its conclusion that, "SVR12 has a 99.8% positive predictive value,
demonstrating the reliability of this time point for assessing a durable response."

But, are they using SVR24 as the end point, or does 'durable' mean for perpetuity?! Maybe I missed it, but I dont think its clear in the article.

Lynn K · « **Reply #84 on:** July 04, 2016, 04:29:57 pm »

I take durable to mean durable vs durable meaning 24 weeks.

However as we are early treaters how many many weeks post treatment are even the people from the clinical trials? Harvoni was only approved Oct 2013 just 2 years 9 months ago so even someone who received Harvoni then and for 8 weeks treatment would have finshed treatment about 130 weeks ago. Just not a lot of us out there yet to generate a lot of data

gnatcatcher · « **Reply #85 on:** July 04, 2016, 04:36:17 pm »

Actually, the FDA approved Harvoni on October 10, 2014, so less than 1 year 9 months.
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm418365.htm

Lynn K · « **Reply #86 on:** July 04, 2016, 06:37:12 pm »

Yeah Gnatty my bad counting on fingers and toes lol

Yeah so I year 9 months give or take so just not a lot of data yet to be had for long term results

dragonslayer · « **Reply #87 on:** July 04, 2016, 07:07:40 pm »

Quote from: Lynn K on July 04, 2016, 04:29:57 pm

I take durable to mean durable vs durable meaning 24 weeks.

However as we are early treaters how many many weeks post treatment are even the people from the clinical trials? Harvoni was only approved Oct 2013 just 2 years 9 months ago so even someone who received Harvoni then and for 8 weeks treatment would have finshed treatment about 130 weeks ago. Just not a lot of us out there yet to generate a lot of data

Actually, it was Oct. 2014! So, even fewer of us out there...

EDIT: (Its really annoying that we cant delete posts!)

Nm this one; I see the correction has already been made!

Lynn K · « **Reply #88 on:** July 04, 2016, 09:51:33 pm »

Yeah my bad sorry about the wrong dates on my part

Hope everyone is having a great 4th of July

spitzbar · « **Reply #89 on:** July 05, 2016, 11:41:21 am »

...laboratory errors are not uncommon...but an error showing a viral load of 744,000...how can that be.

...your name was inadvertently tagged with someone else's blood and tested

...retest should establish SVR or relapse

...blessings

audreywald · « **Reply #90 on:** July 08, 2016, 11:59:11 am »

I had the "definitive" blood test yesterday. Should know in a week or two. Could a lab have mixed up me and my husband? We have the same first initial as well as last name. His viral load was just about 744, 000 - just what one lab said mine was.

also, my husband is showing a lot of symptoms after only 7 years. But he was on/off drinking for many of those years. He is on Antabuse now, so drinking could kill him. He has not had a drink (I am sure in close to a year. Could the disease progress that quickly in only 7 years with the periodic drinking? If anyone could give me some opinions (or facts) I would so much appreciate it.

audreywald · « **Reply #91 on:** July 08, 2016, 12:01:26 pm »

ps - I started Harvoni in January 2014. REALLY early.

audreywald · « **Reply #92 on:** July 08, 2016, 02:16:36 pm »

Just wanted to let you all know that I took my Harvoni every a.m. with my other meds. Also, NO chance of having been reinfected ; NO behavior that could have done that.

Does anyone still feel really crappy after a year post tx? I do. I really want to know about anyone else. I fade out at about 5p.m. and have no energy until the next day. But, as I said, kind of, my stress levels are through the roof. I wake up every morning and cry for a couple of hours (over my missing grandson) I cry if anyone talks harshly to me. My grandson's disappearance destroyed a lot of me. That and being so ill for so long seems to have taken away most of the person I was. Good health again would help a lot.

AussieRosa · « **Reply #93 on:** July 12, 2016, 11:16:09 pm »

Audrey, I'm so sorry to hear you've been going through so much. I can't imagine how I would cope with the disappearance of a close loved one. I just plain wouldn't cope, I know that much. Illness on top of the constant stress of that must really be taking its toll on you. My heart goes out to you. I hope and pray that you receive some good news soon.

audreywald · « **Reply #94 on:** July 13, 2016, 04:35:41 pm »

Good news would sure be a nice change. As for my grandson, I am not handling it. Some days I can handle all of this (health stuff included) some days (twice in the last week) I could not stop crying. All day. That scared me.

audreywald · « **Reply #95 on:** July 13, 2016, 05:35:14 pm »

good news. Lab error. I am at 0 viral load. :-)

KimInTheForest · « **Reply #96 on:** July 13, 2016, 05:40:28 pm »

Quote from: audreywald on July 13, 2016, 05:35:14 pm

good news. Lab error. I am at 0 viral load. :-)

FANTASTIC AUDREY!! Enjoy

Philadelphia · « **Reply #97 on:** July 13, 2016, 05:54:00 pm »

Woohoo!

Patty · « **Reply #98 on:** July 13, 2016, 06:29:02 pm »

Audrey Hi,
My name is Patty. First I'm glad it was a lab mistake. Second I just finished a week ago and I'm in so much pain, but that's not why I'm here. I've learned that undetected means that the virus is to small to read by the instruments they have. So there is still some of the virus still floating around its just such a small amount that they can not detect it with their instruments. Which I believes means that eventual the virus will come back, when who knows, because it's a very slow moving virus. I do know the virus craves sugar so I try and stay away from that, and stress can be harmful. I did not have a shady past nothing wild to write home about, LoL. I was infected by a patient I worked on. I believe we all have the potential to relapse with time. Because the virus is never 100% gone, there are a few floating around, with that being said I'm glad hep-c is finally getting attention for research and cures. I was infected 2003 and was chronic, so I always had symptoms. But I was able to stay steady at stage 1 until my auto accident which took a tremendous toll on my body took me from stage 1 to 4 in just 2 years. So yes stress can have an impact. I was also drawn to your story because my brother one day just dropped off the face of the earth. For almost 2 yrs no contact, than one day we got a phone call, it was him. He had been following the Greatful Dead around on tour and when my dad made the trip from Va all the way across the country to Washington state to get him, he looked as though he had been in a concentration camp. But we had him back and with lots of love and counseling and Prayer he recovered. He now is married and has 4 beautiful children. So don't give up hope. It was many yrs ago this took place but feels like yesterday as I type this to you. You do have a lot to live for, and God is not done with you yet. Thank you for sharing your story, I'm having a hard time coming off Harvoni and you made me forget my pain for a little. Maybe that's your purpose, to be an light and encourager to all of us on here. We all have story's and valleys we had to go thru. But having someone who has gone through it to helps give hope. And today I really needed hope. We are your friends, we lift each other up, give advise and that is so important. To know we're not alone. Thank you. Thank you for giving me hope
Patty

dragonslayer · « **Reply #99 on:** July 13, 2016, 06:30:26 pm »

Patty, just to correct the record, HCV is NOT a slow moving virus; its a very rapidly replicating virus, which means that being undetected in two subsequent blood test is a pretty good indication that the virus is not vital and will cause no problems down the road.. In order to survive, this virus must replicate, and it does so rapidly. It doesnt hang out in small numbers waiting to attack.. Just doesnt work that way.

What's slow is usually the progression of liver disease which results from the virus...

Hope I cleared this up for you.

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