4 weeks on Harvoni . My Hep C still detected.

[JillLynn]

anyone else have this happen?      My viral load is 15....but the virus is still detected.  Truly I am disappointed but have 2 mos to go.      I want this gone.......I know we all do!   Big hugs to you all.       My Dr. said it would be gone at week 4 and it's not.

[penny]

I don't know anything about this...maybe someone else can chime in.... I am sure it's gone by your next blood draw.

[JillLynn]

thank you Penny.  anyone else........on Harvoni and having a 4 week viral load still detected.   it's at 15 which is as low as the test goes but still not showing THE UNDETECTED note we all want so much.

This is my 3rd time trying to cure this virus.   Harvoni is way way easier than the peg/riboviron (did that 48 weeks twice) even went on TV (radio DJ) and told everyone it was gone.  9 mos later it was back.  The first time it never did go away after 48 weeks of torture treatment.

Please anyone.......have you had this happen to you at week 4 with harvoni?   they said week 4 it should be completely gone.

[sunrise]

Hi Jill lyn.
   Im no expert, but how long are you sceduled to take harvoni? You would think that if its 15 it will only go down. I think when its not responding quickly, they would continue treatment for up to 24 weeks. Check with Gilead. They might know... wish I could give you more info

[BattleTheBeast]

JillLynn,

My 4 week on S/O has the same thing however my ID doctor says it is undetected which confuses me but I am going with it and allowing it to perk my spirits. I may be in denial but I will wait and see what week 8 says before I get bummed about my <15 after starting at over 8.3 million.

Choose happiness and hang in there with me!

~Mel~

[mario555]

I've read this detectable virus did happen to some studies participants who still had detectable viruses after 4 weeks. In most (all?) the cases they still went on to be cured after the full treatment so I wouldn't worry about it yet.
You don't mention F level in your post. You don't mention if you're on a 12-24 weeks.
I did do 2 runs of INF+PEG and was considered treatment experienced although I don't agree fully because INF does act at all like the new treatment as opposed to Olysio or simaprevir or others...
I was considered like having cirrhosis although I had no problems with that yet. The reading was based on my F4.
So, Gilead suggested to my doctor to get me on a 24 weeks treatment. I won't really care about the 4 weeks reading (nor the 8, 12...). All I want is the SVR12 which is almost assured after 24 weeks of treatment. You should keep going with the treatment and reap all the benefits of having a liver which is not attacked 24/7.
So, don't worry yet. Carry on and good luck with your next reading!

[Doluska]

Hi Mario! I like your positive approach! I will try all my best to keep like this!
It is not easy, cose I got 3 weeks results and my enzymes are not in normal scale. It is gone down from 200 plus something to 80, 60 with something. Good prognosis - than your enzymes are normal in 2 weeks of treatment. My nurse told me that it " slow response " . Now i will wait for 4 weeks VL. I am on 12 weeks on s/g + RIBA! and health Canada didn't approve 24 treatment, it means - no money for 24 weeks, so plan B - 12 weeks on Harvoni, after finishing this one treatment. Hope it will work! May be somebody can give me useful information?  D.

[JillLynn]

Thank you SO much everybody.      I know the bottom line is 12 weeks.   My drs. asst.  was so positive it would be undetectable with the 4 weeks blood test.
 I guess I let that bum me out when it wasn't.  More confused I guess than anything.

I am genotype 1a.
viral load is 1,500,000.    it went down after my 2 failed tries with peg/interferon.  I did pegasus and penintron for 48 weeks each time.  That was a bitch! to say the least.  My virus was clear for 9 months then came back.

My liver damage is stage 2.  I am truly grateful to have harvoni and going to keep with the positive and grateful attitude.    It just threw me because she said adamantly every time I asked "what if it's not gone in 4 weeks?"  her response WAS ALWAYS....it will be!   so now I know that isn't always the way it goes.

sun is shining here today in Michigan..........cardinals and gold finch at my feeder and heated bird baths.....nature is everything!  love you guys........thank you SO much for being here.   Healing thoughts for all of us!!!!

[JillLynn]

battle the beast....MEL......I am choosing happiness with you and hanging in with you positively!!!!!  big hug and thank you!

[rainydays rainbows]

JillLynn,  Stay positive lots of power in positive thinking. 
I go for my 4 week labs next week 11/26 I won't know the results until doctor's appointment 12/02 I will surely advise you of results.  Maybe I will have the same results as you and be a little freaked also understandable.  For the next 4 weeks remain positive and keep on fighting until cured.  It's not over yet!  Take care, live well  K

[Mike]

The purpose of the 4 week viral load is only to confirm that the treatment is working. It does not correlate with final outcome.

It is the "log" drop that is important. If you went from millions to less than 15 in 4 weeks, that is a 10 fold log drop, which indicates the treatment is working it's wonders.

I personally think they should stop doing the 4 week VL, and move to a 8 or 12 week standard., which is what some treatment providers are doing, as the 8 or 12 week VL is the one that counts.

For the number crunchers: A 4 week post treatment undetected VL (SVR4) is 98.2% predictive that the person will obtain a SVR12 (cured). A SVR12 is 99.8% predictive that the person will obtain an SVR24 (the old standard for a cure).

Best wishes, Mike

[BattleTheBeast]

battle the beast....MEL......I am choosing happiness with you and hanging in with you positively!!!!!  big hug and thank you!

We are going to beat this JillLynn!


~Mel~

[RichardEll]

Jill Lyn:    Don't despair.    I'm 1A, ESLD, on the TP list,  2X previous TX partial responder - did the Walk Through Hell for 48 weeks. 

Recently got SERIOUSLY ill,  hospitalized just as I finally got Harvoni (after a 10-month fight over O/S with my insurance company).    Serious intestinal inflammation,  ascites,  plus some fluid got in around my right lung.   I am in the very Late stages  and beginning to complicate badly.   I hope the Harvoni did not arrive too late for me.    I need a new liver,  no matter what. 

After 8 days of taking Harvoni,  my constant liver ache has abated almost completely.   My GI tracts is still inflamed,  but no liver pain!!    Getting a blood draw tomorrow,  but I doubt it will be for Viral Load just yet.    Viral load about one month ago:   2.5 million.   

TAKE HEART:    My TP Drs.  tell me they are getting 100% success rate with Harvoni,  even in the most difficult cases like mine.     Many are UD at 2 to 4 weeks.    Some of the Tests only go as low as <15,   so don't pay a whole lot of attention to that.    Stay on Harvoni,  for either the 12 or 24 weeks (I will be on for 24, and may be interrupted by transplant).   I am quite certain you will get rid of the virus,  based on my TP center's experience.   

[JoeK9999]

thank you Penny.  anyone else........on Harvoni and having a 4 week viral load still detected.   it's at 15 which is as low as the test goes but still not showing THE UNDETECTED note we all want so much.

This is my 3rd time trying to cure this virus.   Harvoni is way way easier than the peg/riboviron (did that 48 weeks twice) even went on TV (radio DJ) and told everyone it was gone.  9 mos later it was back.  The first time it never did go away after 48 weeks of torture treatment.

Please anyone.......have you had this happen to you at week 4 with harvoni?   they said week 4 it should be completely gone.

Jill,
I had a HVC RNA Quantitative test come back today as positive after on Harvoni for 27 days. My doc didn't want to take the test. He also said he was sure it was gone too. I insisted on the test anyway. He wanted to only take a test 6 months after done with treatment. I am on Harvoni 8 weeks as I fit the bill with no chirrosis, never been treated and less than 6 million viral load.
My Hep doctor told me that the HVC RNA Quantitative (viral load test) is not as accurate as the HCV RNA Qualitative test. A viral load test that comes back as <15 UND, could really be a POSITIVE HCV RNA Qualitative test. He says any test with undetected as a result is meaningless. You want to see
Negative or Positive only for a determination.
Doc is out of town and I can't discuss my results with him for another week.

[JoeK9999]

Jill,
I had a HVC RNA Qualitative test come back today as positive after on Harvoni for 27 days. My doc didn't want to take the test. He also said he was sure it was gone too. I insisted on the test anyway. He wanted to only take a test 6 months after done with treatment. I am on Harvoni 8 weeks as I fit the bill with no chirrosis, never been treated and less than 6 million viral load.
My Hep doctor told me that the HVC RNA Quantitative (viral load test) is not as accurate as the HCV RNA Qualitative test. A viral load test that comes back as <15 UND, could really be a POSITIVE HCV RNA Qualitative test. He says any test with undetected as a result is meaningless. You want to see
Negative or Positive only for a determination.
Doc is out of town and I can't discuss my results with him for another week.

[BattleTheBeast]

Here's the details from the studies done on Harvoni

http://depts.washington.edu/hepstudy/presentations/uploads/103/pptx/ledipasvir_sofosbuvir_master.pptx

[lporterrn]

Yes JillLynn - that happened to me - I was detectable at 6 weeks, but still had an SVR.

[JoeK9999]

Lucinda,
When was the first time you tested Negative?
I am a little concerned. I have had this as long as you, but still fall
into the 40% that can take the 8 week path.
After a 10 days he took a cbc and liver panel. All was normal including AST and ALT
which fell from AST 40 ALT 56 to AST 25 ALT 28
My doctor scoffed when I asked for a test at my 27th day appointment and said the only test that matters is 6 month EOT. He also said he already knows the test will show undetected. He said tests during treatment don't matter and even if I tested positive, I still need to finish the 8 weeks.
He order the qualitative test that just shows positive or negative (no viral load). My test came back positive and he is out of town until the Dec 8th.
 TESTS RESULT FLAG UNITS REFERENCE INTERVAL LAB
HCV RNA NAA Qualitative Positive Abnormal Negative 01
 Positive: HCV RNA Detected

My question is should I demand a total of 12 weeks when he comes back or just stay with the 8 week plan.
I just want to be cured.
Thank you.

[JillLynn]

JoeK999, Richard, Lucinda, Mel.............so glad we're communicating about this here.    Lucinda...that offers hope for sure. 
 I'm getting another viral load test on Monday ( 2 weeks after the last one) just to see whats going on.  My dr. suggested it.          Praying for all of us and hoping we each get virus free once and for all!!!!!
Jill

JoeK999........That's kinda weird that your dr. didn't want to do the 27th day.  Seems most of us are on the same kinda schedule with our blood draws.    For me I started on Oct 17 and had blood draws on Oct. 27, Nov 3, 10, 17 (viral load), Dec. 1,15 and last one on Jan 12 (viral load).  My Dr. knew for sure my virus would be undetected too at day 27, and as you know it wasn't.       But everyone on here has said not to worry so I'm not......but........I wouldn't want to wait 6 months for my first viral load test thats for sure.

[JoeK9999]

Jill,
No sense in worrying. Just remember the viral load test only detects 15 or greater.
Don't let people saying they are undetected at 1 month fool us. They could have 5 or 14 and the test cannot detect that. I really believe it takes at least 7 or 8  or more weeks on Harvoni before every last virus is destroyed. Some of these little guys like to hide out when there brothers and sisters are being mass destroyed.
Yes I agree with you on my doctor's opinions. He's treated many patients over the years and I think he doesn't like to do early tests because it gives a false sense of hope especially with the previous treatments that didn't have the success that Harvoni does. Bottom line is are you cured after 3 months and 6 months EOT. That's all that matters.
Joe

[Bucky]

Hi Joe,
Did some reading about my labs and HCV RNA Qualitative test is the same as HCV RNA ULTRALOG. Target not detected = negative so I was at EOT.
Bucky

[Mike]

An HVC RNA Quantitative PCR test can actually confirm the presences of the virus below the <15 limit. However, the test can't give the precise number below that level (1-14).

Since the test actually detects below the limit it can provide a quantitative number for, a negative test result is just that - a negative finding for the presence of the HCV virus.

In addition, the Hep-C virus does not ''hide" which is a good thing, and is why it can be eradicated.  The ability to hide is what the HIV virus does, which is why it cannot be eradicated with current antivirals even though it can be rendered undetectable.

Best wishes, Mike

[JoeK9999]

Bucky,
Great! You are joining the cured crowd!

Mike,
Thanks for the info. It's hard to interpret a lot of this data on the internet
and which and who is correct.
I just want to be cured of this bug, just like everyone else.
 i guess the numbers on treatment don't much matter until we all see the magic SVR 12 and SVR 24.

Joe

[Mike]

Hi Joe,

You're correct. The only numbers that matter are the end of treatment (EOT) viral load (needs to be undetected) and the 12 and 24 week marks post treatment (SVR).

In any event, I hope you and yours have a great Thanksgiving!

Best wishes, Mike

[lporterrn]

Joe,
My week 4 labs were undetectable, but my week 6 was detectable. I think you hit the nail on the head when you wrote, "No sense in worrying." In fact, although your doc isn't doing more regular viral load, he is technically correct - the only one that really matters is the last one (assuming you are nondetectable up to that point).

[sunrise]

Hope everyone had a grateful Thanksgiving...
 My 4 week PCR came up no numeric to measure. It is a sensitive test that registers  5 IU/ML or higher. I am hopeful,  but relapsing is a possibility.  I just pray we all stay UD in the end. Next VL test Dec 22. Last day of tx is Dec 21. I guess 12 to 24 weeks to see if it really did the trick. It s hard not to worry. Thankfully we have newer txs in the works. Have a restful night.

[JoeK9999]

Sunrise,
Hope you and everyone else had a nice Thanksgiving also. Keep the faith. The odds are greatly in our favor with these new meds. We all have the worry that we may be one of the few percentage of relapsers. As I said in another post, it's not very clear why the few percentage do fail. We all would be curious of what factors played a role in it.
I believe if you finish all the meds, and keep healthy you will be cured.
Hang in there.

On a side note, I feel better than I have in a long time. My fatigue is gone, I had a great appetite and food tasted great yesterday. It's been a long time  since I felt this good. Something is working. I have 3 more weeks to go, unless my doc decides to switch me to 12 weeks from 8 weeks of Harvoni.

[sunrise]

Thanks for the pep talk Joe. Im on the S/O  treatment so its alittle different.  I have had a real healthy appetite as well since startimg treatment. I guess I shoild jist be positive and know there is help if I do relapse. Hope your Thanksgiving was great also!.. Sunrise

[JoeK9999]

I just read this about the Cosmos S/0 trials.
For Harvoni I would think it would be the same, but could not find literature about that.
Rapid virologic response (RVR, defined as undetectable HCV RNA at Week 4 of treatment) was not found to be predictive of achieving SVR.
In patients receiving simeprevir and sofosbuvir alone for 12 weeks, 93 percent achieved SVR, while 57 percent achieved RVR.

43% were positive at 4 weeks and still there was a 93% SVR.
If I read it correctly, if you are or not detectable at 4 weeks on treatment it makes no difference in the final outcome. Keep your chin up!

Here is the link:

http://www.jnj.com/news/all/Final-Data-from-the-Phase-2-COSMOS-Study-of-Janssens-Once-Daily-Simeprevir-in-Combination-with-Sofosbuvir-Presented-at-The-International-Liver-Congress-2014-of-the-European-Association-for-the-Study-of-the-Liver-EASL

[magicpill]

Joe, i got my results back to day.HEPATITIS C QUANTITATION       HCV Not Detected

[sunrise]

Thanks Joe, thats odds I would take to Vegas! I guess its just the jitters . I have 23 days left of tx, and am praying hard for svr. My anxiety level has been higher with this medication. Im taking something for it, and it does help. Think I am wearing thin from all the ups and downs. I am trying to walk in faith, and just relax and face things as they come
 It has been one heck of a rollercoaster ride somce my dx in June. I appreciate you taking time to settle my fears. I hope for you SVR as well.

[BattleTheBeast]

Hi Joe,

One of your comments really struck me; "my food tastes good".  Seriously I am just starting to notice this myself 7 weeks into treatment; some food tastes good again!  Hooray!! I can eat something besides fruit that actually tastes good!

~Mel~

[Doluska]

Hi guys! Very promising information about SVR. Does somebody know something about enzymes going down slowly. Mine are down from 200 + something to 56 and 64. In 3 weeks. But still not normal. Is it a bad sign? My 4 weeks VL I'll know in 3 weeks only. Will be glad to have something to stick my hopes toit! D

[sunrise]

All I know Doluska is that if they are going down, that is an excellent sign. Good luck with your treatment.  Eat healthy and get your rest. 

[sunrise]

How long have you been on tx? Harvoni? 8 weeks tx length?

[Rubye]

Mike,
I've read that HCV can pass through the blood brain barrier and hide itself in the brain to where the new drugs - sovaldi/harvoni - cannot reach them. I've only read this in a couple of forum comments but they were from people who seem to be quite knowledgeable about these things. I'm either too lazy or too scared to research it myself.

[Doluska]

I am on S/O + RIBA, fibrosis3-4, 1b more than 30 years. On 12 weeks, now is week 5. Brace line VL >6 mln.

[Doluska]

Hi Rubie! I don't think it is relevant, cose they traveling with the blood stream, and cannot stay there for a long time.

[Doluska]

Rubye, sorry I didn't spell your name right. My bad

[Rubye]

Misspelling Rubye is commonplace. It only bothers me when people spell it like Rub eye.

Anyway, it does make a difference if it does indeed happen that the virus hides out in the brain or in tissues of the liver. I think, don't really know that much about it, that this is one of the main theories as to why people relapse. It's not like the virus keeps moving through our systems with our blood in treatment.

[Doluska]

Well, so RIBA for sure getting through hemaencefalytic barrier, cose it effects mood and can be trigger of depression and paranoia.may be this is why they still recommend to treat with RIBA? Still, we are just speculating on this. I guess, Lucinda will have more info

[sunrise]

I did alittle research and sulphonamides do pass brain blood barrier which is what olysio is

[sunrise]

I am not a doc and do not know much, but what I do know is that HCV is a blood borne disease, and we have blood going thru our brains. That is why we are using drugs that go thru our blood.

[lporterrn]

Hep C definitely passed through the blood brain barrier, and on PET scans, the hep C brain is significantly different than the non Hep C brain, especially in the prefrontal area.
Interferon and ribavirin definitely affect the brain, in multiple ways. I don't know enough about the newer drugs to comment.

As to why are we still using ribavirin - we need it for GT 2 and 3, and now there is this news: http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml - I know a Kaiser patient whose doc wants her to take Harvoni + rib for 12 weeks rather than 24 weeks of Harvoni. I am livid. 

[sunrise]

Hi Lucinda hope your holiday was good. I am concerned as well. I am not on rib or harvoni, but it is true that these meds get to the whole body correct?

[Bucky]

Hep C definitely passed through the blood brain barrier, and on PET scans, the hep C brain is significantly different than the non Hep C brain, especially in the prefrontal area.
Interferon and ribavirin definitely affect the brain, in multiple ways. I don't know enough about the newer drugs to comment.

As to why are we still using ribavirin - we need it for GT 2 and 3, and now there is this news: http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml - I know a Kaiser patient whose doc wants her to take Harvoni + rib for 12 weeks rather than 24 weeks of Harvoni. I am livid.

Hello Lucinda,
I just want to be clear because I value your opinion ( not knocking the other moderators). Since the clinical out come is nearly identical which do you think is the better protocol, the short and rough 12weeks of H&R or the long 24 weeks and mostly smooth (just H)?
Bucky

[lporterrn]

Sunrise: - It depends on what you mean by "get to the whole body" - Hep C gets to the whole body...
Bucky - I am not a fan of ribavirin, so I'd choose 24 weeks of Harvoni any day.

[sunrise]

I apologize, let me clarify. When we take these DAAs, they a broken down to absorb into our bloodstream correct? Now our arteries carry this medication to all our cells in our bodies right? The only thing it would not reach would be cerebral fluid? Why then is there such a high rate of SVR if the virus was able to hide out there? My doctor tells me that HCV is curable because it does not hide out like HIV. Is he giving me wrong information?

[Bucky]

Sunrise: - It depends on what you mean by "get to the whole body" - Hep C gets to the whole body...
Bucky - I am not a fan of ribavirin, so I'd choose 24 weeks of Harvoni any day.

Lucinda,
Same here. I have some HIV LTS friends and they were given Ribavirin and AZT and it nearly killed them. Although I know you are aware of this, I bet a lot of people don't know how long Ribavirin has been around and its role in the early battle against HIV.  Interferon was used for some cancers and was deemed to be to toxic for that purpose.
I am so glad that we have new meds.
Bucky

[magicpill]

when i was first tested for hep c in 2012 my viral oad was 14 million.I am 3 time cancer survivor and therefore the doctor said icould not do any trials,so i been waiting on harvoni for quite some time,i took my 35 pill today at 7.30  am and i have taken the pill everyday at the same time within a minute or two,I think this is one of the most important points of information,i take it in the morning because that is what my Gastrologist recommened;when they did my viral load October 10 and they came back with a average viral load of 6,5 million,so iwas put on 12 weeks treatment.Iwas very fortunate my insurance approve it the same day and even called me on aSaturday to tell me personaly.I took my first blood test 30 days out and recieved results yesterday and the virus was undetectable,Thank God.I would tell the people whose blood don't back undetectable from what i have read on differant sites is that not a real big deal,and you will be undetectable within your next test,remember take your pill at the same time everyday. HAPPY HOLIDAYS

[Mike]

Rubye,

If the Hep-C virus hid (like HIV) it could not be cured. The research is well established. Hep-C is a RNA virus and must replicate it's self to remain active. This means it only takes one virus to manifest in to millions. Since the virus has been cleared through treatment  for decades (yes the old treatments [INTF and INTF+RIBV] cured up to 70% of Hep-C infections i.e., genotype 2, it doesn't appear that the blood–brain barrier is an issue.

This means either (1) the HCV virus does not jump the blood–brain barrier or (2) the medications used for decades jump the barrier and eradicate any virus that may be present in the brain.

The theory that HVC "hides" relates to some trying to explain why a small percentage of patients who clear the virus relapse. The most plausible explanation for this small group (1-2%) is reinfection with the HVC virus after treatment.

Best wishes, Mike

[JoeK9999]

Magic,
Good news your UND at 30 days.
I did my test at 27 days because I was at the doc's that day. Maybe if I waited 3 more days it would have shown UND. Who knows?
I saw that some people got tested every week. Most of them went from a low level
of detection one week to undetected in the next weeks test. They could have been UND 1-6 days after the prior test. We'll never know.
All we all need is to remain UND after we're done with this stuff.
The odds are greatly in our favor.

[Mike]

Here's research regarding HCV and the brain:

"HCV RNA Association With Brain Tissue:

The majority of reports supporting HCV in the CNS have used PCR-based approaches to detect viral genomes in brain tissue and cerebral spinal fluid (CSF).[14–21] However, the detection of viral RNA alone does not reflect active sites of replication and may simply represent viral carriage from the periphery. More recently, several authors have reported negative-strand HCV RNA, a replicative intermediate, in the CNS suggesting viral replication.[15,16,22] However, many studies include small numbers of patients, making it difficult to ascertain the frequency of HCV in brain tissue. A recent study quantified the levels of HCV RNA in multiple samples from the brain and liver of HCV-infected patients,[19] demonstrating between 1000 and 10 000-fold lower amounts of HCV RNA in brain tissue compared with liver, consistent with mild neuropathologies observed in HCV-infected patients. In summary, care is needed when interpreting the physiological relevance of HCV RNA genomes in brain tissue, where viral RNA could be a result of blood contamination and not direct evidence of viral replication.

There is some evidence of genetic diversity between viral strains isolated from brain tissue, PBMC, serum and liver biopsies from the same patient; Radkowski et al. observed that HCV NS3 sequences isolated from a variety of brain regions were similar to those isolated from lymph nodes but differed from serum-derived virus, suggesting independent viral evolution in the brain.[15] This study failed to detect negative-strand HCV RNA in the serum, leading the authors to conclude that viral sequences detected in the brain were not a result of blood contamination.[15] Similarly, variability in the HCV internal ribosomal entry site (IRES) was reported in brain tissue from two HCV-infected patients, compared with liver sequences.[20]More recently, a study of 13 HCV-infected patients, of which four had detectable HCV signals in brain tissue, used single nucleotide polymorphism analysis to identify a brain-specific mutation that constituted approximately 10% of HCV sequences in the cerebellum and medulla, whereas this mutation was undetectable in the liver and plasma of the same patients.[19] Taken together, these studies strengthen the evidence that HCV may replicate in the brain, raising questions on which cell types within the CNS support HCV

Conclusion

Hepatitis C is a member of the Flaviviridae, whose members include a number of neurovirulent viruses, including Japanese encephalitis virus, West Nile virus and Tick-borne encephalitis virus.[54] Neurological symptoms associated with HCV infection have been reported many times; however, it has been unclear whether these symptoms are a function of liver disease, peripheral inflammation or direct infection of the CNS. The detection of HCV RNA in brain tissue, together with evidence to suggest independent viral evolution within the CNS, has suggested that the neurological symptoms reported in patients may result from direct infection of the brain. Recent advances in the tools available to study HCV have allowed researchers to address the question of whether HCV replicates in brain-derived cells. The recent observation that HCV can replicate in brain endothelial cells, and that neuroinflammation is a feature of HCV infection, may provide a mechanism for the neurological symptoms observed in a significant number of infected patients."

Best wishes, Mike

[dragonslayer]

Hep C definitely passed through the blood brain barrier, and on PET scans, the hep C brain is significantly different than the non Hep C brain, especially in the prefrontal area.
Interferon and ribavirin definitely affect the brain, in multiple ways. I don't know enough about the newer drugs to comment.

As to why are we still using ribavirin - we need it for GT 2 and 3, and now there is this news: http://www.hepmag.com/articles/Harvoni_ribavirin_cirrhosis_2501_26459.shtml - I know a Kaiser patient whose doc wants her to take Harvoni + rib for 12 weeks rather than 24 weeks of Harvoni. I am livid.

Lucinda, is the Hep C brain with a low stage/grade liver damage as in 0-1 also identifiable?

ps... Mike, I posted this before I read your post, and now I find I cannot delete it.. Thanks for the informative entry.

[Rubye]

What has yet to be clearly and fully explained is why people who have been undetected for a number of weeks and have completed treatment, have the virus show up again within weeks or a few months. People who were "cured" on Interferon stayed clear of virus for many months and then some tested positive for a viral load again some time later.

Why was it they had no viral load for many months and then had it come back. It happened to too many people for it to merely be reinfection. So, there is speculation that the virus tucks itself away in parts of the brain or in tissues of the liver and then for some reason begins to replicate again. It's very sneaky.

With the new drugs, obviously we don't know how long people who are "cured" now will stay clear of the virus. This is yet to be seen in another couple of years.

Just my thinking but a lot of it is based on a lot of reading and research I've done over the last year. Being sick has given me way too much time for this sort of thing I'm afraid.

[dragonslayer]

What has yet to be clearly and fully explained is why people who have been undetected for a number of weeks and have completed treatment, have the virus show up again within weeks or a few months. People who were "cured" on Interferon stayed clear of virus for many months and then some tested positive for a viral load again some time later.

Why was it they had no viral load for many months and then had it come back. It happened to too many people for it to merely be reinfection. So, there is speculation that the virus tucks itself away in parts of the brain or in tissues of the liver and then for some reason begins to replicate again. It's very sneaky.

With the new drugs, obviously we don't know how long people who are "cured" now will stay clear of the virus. This is yet to be seen in another couple of years.

Just my thinking but a lot of it is based on a lot of reading and research I've done over the last year. Being sick has given me way too much time for this sort of thing I'm afraid.

Can we not be guided by the ION3 trials?  Is SVR12 not good enough even with these new drugs?  That relapse rate for Harvoni shows up at only about 2% provided the treatment duration is followed per Gilead guidelines.  According to the Journal of Hepatology, SVR12 is 99.8% predictive of  SVR24 results, which I thought has been the benchmark to use for SVR. 

[JoeK9999]

Rubye,
Note that Lucinda under treatment was undetected at 4 weeks and then detected at 6 weeks. I know there are many opinions on this board about the quantitative viral load test. Undetected does not necessarily mean every last bit of virus is gone. It's just below the detection limit. Lucinda's 4 and 6 week tests prove that, and in the end when it counted she was cured.
 
SRV 12 and 24 will show the true results. The odds are in all of our favors with S/O and Harvoni like they never have been before in the past.
Worrying doesn’t change anything. Don't worry about tomorrow. Tomorrow will worry about itself.

[sunrise]

Good morning
         Well said Joe. This ride can get overwhelming sometimes, but a dose of common sense goes a long way
 The facts show the cure rates. We are blessed to be able to have a chance to slay this dragon. Thanks Joe....:-)

[lporterrn]

A couple of comments in this thread:
Dragonslayer asked,

Lucinda, is the Hep C brain with a low stage/grade liver damage as in 0-1 also identifiable?

Yes - and it is improved with an SVR. Some of this may not be because the virus itself passes in to the brain, but of the body's immune response to HCV, which affects brain chemistry.

Rubye wrote:

What has yet to be clearly and fully explained is why people who have been undetected for a number of weeks and have completed treatment, have the virus show up again within weeks or a few months. People who were "cured" on Interferon stayed clear of virus for many months and then some tested positive for a viral load again some time later.

Why was it they had no viral load for many months and then had it come back. It happened to too many people for it to merely be reinfection. So, there is speculation that the virus tucks itself away in parts of the brain or in tissues of the liver and then for some reason begins to replicate again. It's very sneaky.

With the new drugs, obviously we don't know how long people who are "cured" now will stay clear of the virus. This is yet to be seen in another couple of years.

I'd like to see what you are reading - It contradicts all the evidence I've seen - and when I say evidence, I mean solid, current, scientific evidence - not anecdotes. It is so easy to scare ourselves with hearsay, and I just can't do that anymore. It is scary enough what the insurance industry is doing to us. 

We don't need to know

how long people who are "cured" now will stay clear of the virus. This is yet to be seen in another couple of years.

This virus doesn't hide out  - it replicates. If it can't replicate, it is gone. The exceptions to this are in people with cryo, and some rare immune dysfunctions.

[sunrise]

Thanks Lucinda!
          Im glad you set it straight. .. 21 days left on my treatment
 Im so excited for the cure! Have a wonderful holiday season... Sunrise

[Doluska]

Hi Lucinda!
I am totally agree with you! It is scary to take those pills and deal with side effects, to add to this statements that doesn't have solid facts, - it is just drive yourself down the road to nowhere . Let's stay strong and stay tuned with optimism and calm approach!
What I really know for sure, and Lucinda will agree with me - optimists are cured better and have less side effects! I saw it and every time when I witnessed it - it was so truly unexplainable, but fact!!
Good week ahead for all warriors! SVR is ahead of us!

[lporterrn]

I don't know if optimists have better cure rates, but I do know it feels better to live in optimism!

[Mike]

Relapse after a SVR24 is very, very rare. All the scientific research I've read and the professionals I've talked to, indicate that this (relapse) is do to (1) reinfection or (2) false negative test results at the end of treatment.

There is no body of empirical evidence or data that indicates HCV hides like the HIV virus.

In fact, the research indicates the opposite - that the virus does not hide, which is why it can be eradicated in the body and thus "cured."

Best wishes, Mike

[dragonslayer]

Relapse after a SVR24 is very, very rare. All the scientific research I've read and the professionals I've talked to, indicate that this (relapse) is do to (1) reinfection or (2) false negative test results at the end of treatment.

There is no body of empirical evidence or data that indicates HCV hides like the HIV virus.

In fact, the research indicates the opposite - that the virus does not hide, which is why it can be eradicated in the body and thus "cured."

Best wishes, Mike

And since that's true, we might as well recognize SVR12 is as predictive of SVR as is SVR24, as is SVR4, with very little fall of in reliability .. This from the Journal of Hepatology:

"Specifically, research comparing the predictive value of a sustained virological response 12 (SVR12) and a sustained virological response 24 (SVR24), found no statistical difference between these to end points in patients treated with a Sovaldi (Sofosbuvir) based regime.  In fact a SVR12 has a 99.8% positive predictive value, demonstrating the reliability of this time point for assessing a durable response.   Also a SVR4 has a 98.5% predictive value, that individuals who achieve an SVR4 will achieve an SVR12 and SVR24!"

[Rubye]

Overall, 779 of 796 patients (98.0%) with an SVR4 also achieved an SVR12, making the PPV of SVR4 for SVR12 98% and the NPV 100%. Of the 779 patients with an SVR12, 777 (99.7%) also achieved an SVR24, making the PPV of SVR12 for SVR24 >99% and the NPV 100%. Of patients who relapsed post-therapy, 77.6% did so within 4 weeks of completing therapy.

http://www.ncbi.nlm.nih.gov/pubmed/25314116

[Rubye]

I meant to add this is why I'm doing my first eot vl at eot 1 week rather than right at the last day of tx. Then again at eot 4, 12, and 24 weeks. Because I'm such an optimist I am sure I will remain und each time but I just love validation.

[JoeK9999]

Lucinda and/or Mike,

The Cosmos study for S/O showed 57% had a RVR at week 4 and 43% didn't, but still
93% had SRV12. They concluded that RVR did not affect the outcome.

My question was there any similar data on Harvoni (S/L) collected?
When I called the Gilead help line they told me 4 week VL tests had nothing to do with length of time on Harvoni, but were vague and said to talk to my doctor. Since my doctor just buried his wife, I am concerned his mental state is not so clear right now.
Joe

[JillLynn]

 Today I get my 6 week VL on Harvoni.    So by Wednesday or Thursday, I'll know if it's undetected.   But like Lucinda, Mike and many have said....... the bottom line is SVR at 12 or 24 and I get that......still......my hope is for UND with this result of course.   
         
sending hopeful and positive healing energy to all
   
     

[mario555]

Good luck on your VL after 6 weeks. I'm only on week 3 and I am curious to see how other patients turn out...

[Bucky]

Relapse after a SVR24 is very, very rare. All the scientific research I've read and the professionals I've talked to, indicate that this (relapse) is do to (1) reinfection or (2) false negative test results at the end of treatment.

There is no body of empirical evidence or data that indicates HCV hides like the HIV virus.

In fact, the research indicates the opposite - that the virus does not hide, which is why it can be eradicated in the body and thus "cured."

Best wishes, Mike

Good morning people,
Mike is absolutely correct! HCV does not hide (according to my IDS). My HIV+ friends should be so lucky.
Bucky

[mario555]

And you too Bucky! I sure hope you're free of this awful disease. Is dec 8th the day of your blood draw or is it the day where you know the answer?

[Mike]

Hi JoeK9999,

I would imagine the statistics are comparable with Harvoni. The important VL test is the one you get at the end of treatment (EOT). The 4 week test doesn't correlate with successful outcome. It was used as a marker in the clinical trials to gauge  how fast the drugs were knocking out the virus and as a data point.

HCV is an RNA virus and must replicate to survive. It really doesn't matter if you knock every one out in 2 weeks, 4 weeks or 6 weeks. The important thing is to knock them all out while on treatment so it can no longer replicate. Once this is achieved, the dragon is slayed.

Best wishes, Mike

[Rubye]

That's such good news to hear that the HCV does not hide out like the HIV.
It sounds like because HCV replicates that means something like a single virus could not be in existence. Is it like a strand and each piece is connected to the other so that there are no single pieces and it's all one long strand? Does HIV not replicate?

I suppose I should take a biology class this winter. 

[sunrise]

Hi Rubye
      There is a really good presentation on you tube. Made by MSB it shows exactly how HCV replicates and how the RNA strands work. You will learn alot. It is an animated display. 

[Mike]

Hi Rubye,

Here's a quick primer on HCV at the cellular level and how it replicates. The goal of treatment is to knock out the virus (and consequent RNA) faster than it can replicate. Once the virus is significantly reduced, the medication overpowers any RNA strains/viruses that may be lingering. Once done, the HCV is eradicated and the HCV life-cycle is ended, resulting in a cure. (HIV replicates much in the same way, but 'hides', meaning it is never completely eradicated and the life-cycle continues through replication.)

Here's the link:

https://www.youtube.com/watch?v=Y8h2wzwdzZs

Best wishes, Mike

[Rubye]

Thank you! The video helped a lot and I enjoyed it. Now I really want to take a biology class. I've forgotten all this stuff since college. Plus, I saw a lot of other videos I'm going to watch but for some reason I do much better in classes. Structure.

Still, I don't see why replication rules out the possibility of a maverick hanging out in the liver tissue or brain. HIV also replicates. I'm sure it's because I don't understand the process enough though and so will keep reading.

Thank you again.

[Doluska]

Oh, Mike! It is such a relieve to learn that not everybody getting excellent result too quickly, cose my body doing it, but slowly. And another  thing, I am glad that I am not on Harvoni, I am on S/O + RIBA, so Harvoni will be my plan B if the dragon still in my body! D.

[Mike]

Replication doesn't rule out that a virus doesn't hide. The effectiveness of treatment of those who obtain a SVR12/SVR24 rules this out.

Simply put, there is a very, very small number of relapsers (1-2%), and it is felt that this is due to reinfection or false negative EOT VL test results.

I hold to the reinfection explanation. For example,  HCV can survive outside of the body for 42 days. This means one can be reinfected by simply using a toothbrush, nail clipper, acupuncture needle and so on. I also believe it is possible to reinfect yourself via these modalities, which is why threw out all toothbrushes, nail clippers, combs, brushes and so on when I became undetectable. I did this at the end of treatment as well.

Although the chance of infection from these modalities is very, very low, there's still a chance, and I wasn't willing to risk it.

Some will dispute the self-reinfection thesis; but if it can work on paper - and it does - it can work in the real world.

Best wishes, Mike

[sunrise]

Hi Mike one question. Is boiling my steel implements for 15 monutes good as well?

[Rubye]

Oh ok, I see what you are saying about reinfection now Mike. On the other post when you said this . thought you meant reinfection from a renewed iv drug use and maybe I'm naive but I don't think most of us go back to using hard drugs. But, I agree with you about reinfection from toothbrushes, razors, etc. I was changing mine every two weeks and just ordered more so I can change once a week in my last 3 weeks.

However, I wear retainers and they cost a lot to replace so I'm thinking since my backup pair have not been used for a few months they should be safe.

I have a friend who has no idea how she got HCV - no iv drugs, no transfusions, no tattoos. I think one easy way to catch it may be during manicures when the tool for cuticles draws blood and the girl uses the same tool on another, with no sterilization in between, and it draws blood from the second person. I quit getting manicures for this reason.

[sunrise]

Me too Rubye. Im in the business and alot of the techs are sloppy. I was told by the Gilead nurse in the class that bleach and water is the only thing that kills the virus, not barbicide. Which stunned me because that is what state board requires. I do my own feet and hands. That is why I will sterilize, as a few of my implements are costly, bleach  following boiling. At least thats what I learned in Solvaldi class. I do replace toothbrush every week though. Nail clippers are cheap enough also.

[Mike]

Relapse could occur through reinfection from another or (as I believe in some extremely rare instances), through self-reinfection.

The chance of self-reinfection, however, is very minuscule  and nil after 42 days post EOT.

I want to be clear hear: Not everyone will agree that self-reinfection can occur, as it is not a well documented occurrence, though in theory, it could happen. 

So just in case, I got rid of all my razors, toothbrushes, combs and so on when I became undetected. The cost of replacing these items is really pennies on the dollar  in the scheme of things.


Best wishes, Mike

 

[sunrise]

Hi Mike
 I agree, again the Gilead nurse instructor did tell us re infection can occur with personal items . New toothbrushs are a must as well as razors and nair clippers. Being a barber I always use fresh disposable razors on every client. Also I wear gloves when shaving. That more than anything scares the c**p out of me. Ive had clients reveal their hcv status aaah! I am sooo careful as well as germaphobic. Better safe than sorry

[dragonslayer]

During treatment, how often should these personal items replaced..  For instance, if on an 8 wk course of treatment, would changing at the 4 wk mark, and again at eot be prudent?  Can boiling and bleaching in between have any effect?  Thanks

[sunrise]

Hi Dragonslayer
     Again im just going on what the Gilead nurse instructor taught us in our Sovaldi class. I use a new toothbrush every week. I boil and bleach my shears and tweezers. Thats up to you. Razors, get disposable and only use once. Throw away after. As for combs and brushes bleach an water soak for an hr. Rinse. Again im no expert but this was the guidelines set by nurse in class. Best wishes

[dragonslayer]

Sure would be nice if we could get some real numbers as to how real a threat this self-infection really is, and if it exists in reality and not just in theory, what is its incidence!

[sunrise]

Don't worry so much. Being a barber I come into direct contact with many people, and I know for a fact I got hcv through a transfusion in surgery. Just be careful and dont take risks. Just be smart and use your best judgement. I found a pack of 5 toothbrushes for $1.00. Worth it. After my UD in 4 weeks I use a new one every week. Never reuse razors. They are inexpensive as well as nail clippers

[Rubye]

Sunrise, plus $45 for a pedicure is way too pricey for me nowadays.

[sunrise]

True Rubye also you never know how the techs take care of their tools. Scarey. Although a foot massage sounds good right about now :-)

[Mike]

Hi Paul,

For ethically and  practical reasons, you could not design and implement the type of study needed to obtain a quantified number regarding self-reinfection.

But let's consider a research design and method to study this: The easiest way to quantify this would be to have a Hep-C free group of participants and provide them with Hep-C infected toothbrushes, razors, nail clippers et. el. for daily use.

After a defined period of time, you would  test the participants for the Hep-C virus to determine how many developed an infection. Once determined, you would have a number that could be used for extrapolation.

As can be seen, this would be unethical and this design would never be approved by Institutional Review Board nor would it meet federal guidelines  "[r]isks to subjects are reasonable in relation to...the importance of the knowledge that may reasonably be expected to result" [Federal Policy §___.111(a)(2)].

Another design could be gathering a group of HCV+ participants who are starting treatment. A viral sample would be taken for storage and, once the participants were deemed to have cleared the virus, provide him/her with an instrument infected with his/her stored virus. After a defined length of time, the participants would be tested for an active infection.

Of course, in this population there would be design issues with false negative results, relapse that would occur despite re-exposure and numerous other variables that can't be controlled, which makes the previous design more attractive.

Again, this would be unethical and would not meet the  "[r]isks to subjects are reasonable in relation to...the importance of the knowledge that may reasonably be expected to result" [Federal Policy §___.111(a)(2)].

Then there is the issue of informed consent  and so on.

Because of these factors, this type of research would be unethical and impractical.

However, we do know that Hep-C can be transmitted through the use of infected items such as needles, nail clippers, razors and so on. We  know that Hep-C does not discriminate.  Further, we know that the virus can be cleared (cured), and acquired through reinfection/exposure. It is also known that reinfection can occur with the same genotype or a different genotype. We also know that having a chronic infection and clearing the infection does not make us less susceptible  to reinfection.

Knowing this, it seems reasonable to conclude that self-reinfection could occur, though the chance would be very low.

So my question is this: Is it worth the risk of reinfection when simply changing toothbrushes, nail clippers and razors et. el. avoids this possibility entirely?

Best wishes, Mike

[dragonslayer]

Mike, excellent post!!!  Clearly the kind of study that would shed some light on this issue would be impossible.    I think the whole area of transmission modes is a bit cloudy once you get outside of the methods usually thought of in this context.. Whether its sexual transmission, or toothbrush sharing etc, we hear that its very rare, but without quantification, we really dont know how rare it is.  Lets just hope its not more common that is thought, and replacing personal items that may have had blood contact is the prudent thing to do... But of course there's the question of how far do we go with this.  Do we replace every week during treatment?  In my mind, Im likely to replace after 4 wks, and again at eot..  Everybody will come to their own conclusion about how they want to deal with this.  Hopefully, we wont be in for any surprises.

ps... not to focus on stupid stuff, but ive got a pair of clippers and tweezers that I really dont want to part with.. Any way to sterilize these through boiling, bleaching, or however, so I can be safe, and still hang onto them?

[Rubye]

It just seems like common sense to me. When I brush my teeth, half the time my gums bleed and so it figures my toothbrush is going to have blood on it and even if I rinse it well it seems like there's a possibility some will remain and with it the virus. So when I brush my teeth again and my gums bleed again then the virus is reintroduced though my gum tissue.

[sunrise]

Dragonslayer
        Just letting you know when you boil steel for at least 15 minutes it is sterilized. If you follow up with a soak immursed in half bleach half water that will kill anything. Make sure you apply a good clipper oil to your clippers after you dry them. as they can get stiff.

[Mike]

Here's an article that disuses relapse after an SVR24 is achieved (1 relapsed at 8 months, 1 at 65 months [5.5 years] and one at 78 months [6.5 years]). The research analyzes very small samples (3 and 6 persons); but tries to answer if the relapse was due to reinfection or relapse from the original Hep-C infection.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=8&cad=rja&uact=8&ved=0CE4QFjAH&url=http%3A%2F%2Fjid.oxfordjournals.org%2Fcontent%2Fearly%2F2013%2F11%2F14%2Finfdis.jit543.full.pdf&ei=awx9VPHPLKbIsQTfi4HQBw&usg=AFQjCNGMIMgJ-NdPcLLT-8b1nzPKPv553Q

Best wishes, Mike

[dragonslayer]

Thanks Mike..   Seems there is still a lot to be learned, particularly with regard to the new drugs and their efficacy over the long term.. Particularly disconcerting was the last paragraph!  Wow...

Its a highly technical article, but if Im reading it right, most of the findings, because of the longer time frame required to accumulate these results were based on Interferon based strategies, and, the reinfections mentioned were believed to be more a case of relapse than reinfection.  Not that that's any solace!  Its not known, I guess, how much of this is applicable to the newest drug regimens.

[Mike]

Hi Paul,

I know. I was hesitant to post it; but it's important to stay up to date on HCV clinical research and what it is pointing to.

I thought the research line that suggests that it is the weak, ineffective HCV virus that may be overlooked by the antivirals due to it not producing RNA strong enough for the drugs to detect, that latter mutates in to an effective virus that produces the RNA need to replicate itself, leading to late relapse.

The positives are that scientists are researching late relapse (after a SVR24), even though relapse after an SVR24 is very rare and that it is felt that within 3 years, almost everyone will be cured.

This line of research may help unlock the key to other viral cures, including HIV.

It's truly amazing.

Best wishes, Mike

[dragonslayer]

Mike, I couldn't glean this from the article, but what do you think might account for this:

"...patients achieving SVR in the absence of
cirrhosis still progressed to cirrhosis
despite being cured of HCV infection."

I went to the referenced study for further clarification, and was fortunate to find this near the end.. I think Ill choose to remember this instead:

"The observations of the present study strongly suggest that fibrosis regression including resolution of cirrhosis will occur in the vast majority of paitents who will achieve SVR with these future therapies"

http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20(changes)%20(F_060614V)_PROTEGIDO.pdf

[sunrise]

Yes after reading that report, it does give one pause. To think that because there is not enough time elapsed with the new DAAs, that there isnt enough data to provide whether late relapse can happen.  Oh well All we can do is pray we won't be a relapser and enjoy this treatment for what it is. A chance to get better...

[Mike]

Hi Paul,

That really surprised me - and I have no firm answer other than some of causes could relate to other health issues (fatty liver, a return to heavy alcohol consumption, obesity et. al.), though I would think there would be some controls to factor out these variables - especially data based on a longitudinal analysis.

I would also note that the article is an editorial summary of current HCV research studies and tentative findings.

Best wishes, Mike

[Bucky]

"The observations of the present study strongly suggest that fibrosis regression including resolution of cirrhosis will occur in the vast majority of paitents who will achieve SVR with these future therapies"

http://www.annalsofhepatology.com/revista/numeros/2014/HP144-03-Long%20(changes)%20(F_060614V)_PROTEGIDO.pdf

Now that is what I want to see!
Bucky

[BattleTheBeast]

Ok, kind of concerned from all this; does this mean if we somehow were in a pool and cut our foot or scrapped ourself and there was blood even a tiny bit that we could have potentially infected others. This is crazy to think about given how many years I alone was undetected. What is safe, what isn't, what's over the top? No one else in my family is infected after all these years of not knowing but what does that mean?

I don't know what is ok to do, then we wonder why we have a stigma in our own minds. Just hard to know right from wrong.

~Mel~

[sunrise]

Yeah Bucky
        Thats more like it. Good wishes on your results

[Mike]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

[sunrise]

Mel
 No worries. Pools are treated with clorine. That kills virus. We cant be so stigmatized. Its not easy to transmit or I would be out of a job. Rest easy Mel

[Bucky]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

Yes, this was the same conclusion that I reached after reading both reports. Since most data was reflective of clinical treatment with I&R then one can hope for an improvement for the final outcome when you consider those of us treated with DAAs.
Bucky

[dragonslayer]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

Still trying to find some good news here, I note that the actual quote is as follows:

"40% of patients resolved ALL fibrosis..."  There were also partial reductions, which of course would bring up the total number of reductions.  The abstract also lists the mean reductions.   Its an acrobat file so I cant copy and paste from it. Ill just type it in:  " Patients with SVR had a significant decline in mean inflammation and fibrosis scores (from 6.7 to 2.2 and 3.3 to 1.8 )"   Remember this study was done on patients having received interferon treatments.  We really dont know what these numbers will look like with Harvoni or S&O treatments.  Guess we're the guinea pigs for now.

[Mike]

The way I read the good news is that if the virus is eradicated and an SVR is achieved, the inflammation is stopped as well as the progression of fibrosis. This, in turn, can improve liver function and lead to regression of fibrosis and cirrhosis in many who obtain a SVR. This process continues 5-15 years after an SVR is achieved, indicating that a Hep-C damaged liver can rejuvenate.

However, there is a significant number of those who obtain an SVR who do not experience this and may have a progression towards cirrhosis irrespective of an SVR (gleaned from the other article).

Best wishes, Mike

[BattleTheBeast]

Mel
 No worries. Pools are treated with clorine. That kills virus. We cant be so stigmatized. Its not easy to transmit or I would be out of a job. Rest easy Mel

So i guess I need to go find a hot tub and throw all my stuff in every couple of weeks for a thorough cleaning

[Bucky]

I just wanted to point out that the abstract that appeared in the Oxford Journal  "Hepatitis C Virus Infection: When is a cure not a cure" was an editorial commentary containing references from 21 sources dated 11/14/2013. The paper published form the Annals of Hepatology Contained 46 references and was dated 7/2014.

Now, not to discredit but maybe question the accuracy of these two papers and all the other information that we are being flooded with, let me give you a little background about myself. I retired this spring as an instructor from a State Funded ICF facility that is home to 350 individuals who are mostly severe/ profound intellectually disabled. Beside teaching them basic care and vocational skills our main objective was to investigate new medications and behavioral approaches.

Most all of the anti psychotic, anti depressant, and dementia medication were tested at the facility many years ago before they were issued FDA approval. We also investigated different approaches to behavior interventions involving different types of stimuli that evolved from shock boxes (no longer allowed) to more humane rewards such as a favorite editable or preferred items for not exhibiting maladaptive behavior. All the data relating to these finding was recorded and annualized by our research department comprised of roughly 25 people.
   
Every spring our campus was flooded with doctoral students preparing their dissertations for graduation. They all had a trial or subject that they investigated and collected data on as well. Most all had their papers were published ( I am now referring to all the references note in the first paragraph). The research department at my old facility had literally thousands of abstracts published to reflect the current theories of the time. The next year a student or another clinician would publish another paper with a different theory than the one from a year earlier.

My point in all this is that although these abstracts appear creditable and accurate they are mostly reliant on a copulation of references from other authors. With my heavy involvement in clinical trials, data collection and individual interpretations, I can attest to the fact that you cannot believe everything you read (good or bad) in published reports as they are sometimes subjective interpretations of other peoples findings.

Bucky

[sunrise]

Hi Bucky
      Guess the proof is in the pudding.  Im really anxious for your results! Is this your end of treatment or 12 week after?
       Thanks Sunrise

[mario555]

To ''Battle of the beast''. On which treatment are you on? S/O or Harvoni?  Your liver condition appears very similar to mine and I'm interested to know how things progress with you. Please continue to tell us your numbers. This way I can see what will happen to me 3 weeks down the road!

[Bucky]

Hi Bucky
      Guess the proof is in the pudding.  Im really anxious for your results! Is this your end of treatment or 12 week after?
       Thanks Sunrise

Hi sunrise,
Yes, it is my 12weeks EOT blood work. I had my baseline MRI yesterday and I sure wish I had taken a Xanax before that! I will find out that result on Monday when I see my IDS. I have some nonfocal small lesions identified during my US six months ago but my doctor said that they were probably caused by my liver trying to regenerate. My blood test #s for tumors was very low so I am not concerned.....yet.
Bucky 

[sunrise]

Well I'm plugging for you Bucky. I have 20 days left on txm o have a doctors appt later today and im gomna pick his brain aboit this relapse issue.

[JillLynn]

Bucky........pulling for you too!

[Bucky]

Thank you my friends. I still feel really well and have lots of energy so I am only anticipating the best news. We shall see.
Bucky

[Mike]

Hi Bucky,


I did note that the post was an editorial discussion, which summarized current research studies and findings. Since it was written by Dr. Hans Tillman and published in a  juried journal from one of the top universities in the world (Oxford), I gave it a little more weight then an abstract from a doctoral  dissertation.

The author, Hans Tillman was appointed Professor of Medicine in Leipzig, Germany in 2004 and continued to focus on viral infections. In 2007 he joined the Duke Clinical Research Institute (DCRI), which can be considered the largest academic clinical research institution worldwide, where he is now  responsible for viral load and safety monitoring for various clinical trials. He has an interest in treatment prediction and optimized use of antivirals. Dr. Tillman has published over 120 original and 65 review and opinion articles, and 35 book chapters, and has edited 2 books. 

Having been a research assistant myself at a  university for 4 years, I'm  versed in research methods & design as well as applied statistics and so forth. I also work in the field of integrated disability management, which requires the consumption of current clinical research in a variety of areas.

This being said,  I thought Dr. Tillman did an excellent job summarizing current research studies and discussed the findings in an objective manner, giving appropriate references and citations.

Best wishes, Mike

[sunrise]

Wow Mike
           Thats a whole lotta information to take in. Sounds like we have some good people watching over us  :-). Guess we are all just anxiously waiting to see our progress. Thanks for all your answers and concern
Sunrise

[Bucky]

Hi Bucky,


I did note that the post was an editorial discussion, which summarized current research studies and findings. Since it was written by Dr. Hans Tillman and published in a  juried journal from one of the top universities in the world (Oxford), I gave it a little more weight then an abstract from a doctoral  dissertation.

The author, Hans Tillman was appointed Professor of Medicine in Leipzig, Germany in 2004 and continued to focus on viral infections. In 2007 he joined the Duke Clinical Research Institute (DCRI), which can be considered the largest academic clinical research institution worldwide, where he is now  responsible for viral load and safety monitoring for various clinical trials. He has an interest in treatment prediction and optimized use of antivirals. Dr. Tillman has published over 120 original and 65 review and opinion articles, and 35 book chapters, and has edited 2 books. 

Having been a research assistant myself at a  university for 4 years, I'm  versed in research methods & design as well as applied statistics and so forth. I also work in the field of integrated disability management, which requires the consumption of current clinical research in a variety of areas.

This being said,  I thought Dr. Tillman did an excellent job summarizing current research studies and discussed the findings in an objective manner, giving appropriate references and citations.

Best wishes, Mike

Mike,
It appears that we something else in common.  I had 30 years in the field and have witnessed many theories discredited during my time at my former employer. Over the years we have had many doctors and students from Duke conduct studies and trials of which I was part of the data collection and interpretation. I met Dr. Tillman when he was a guest of our facility director.
Bucky

[JoeK9999]

JillLynn,  Stay positive lots of power in positive thinking. 
I go for my 4 week labs next week 11/26 I won't know the results until doctor's appointment 12/02 I will surely advise you of results.  Maybe I will have the same results as you and be a little freaked also understandable.  For the next 4 weeks remain positive and keep on fighting until cured.  It's not over yet!  Take care, live well  K

Rainydays rainbow,
How did your 4 week VL test turn out?
Joe

[rainydays rainbows]

To All,   My viral load was undected at 4 weeks ALT and AST were fine in normal range I believe the test that were done are the same as the ones done to diagnosis my Hepatitis C.  I am just going with HOPE!  Keep our HOPE alive for the best.  Thanks to everyone

[JillLynn]

Hi Joe.......Hoping today to get the results.   If I don't hear from my DR.  I'll call around 4pm.     Thank you for asking!  I'll be back for sure with the results.
   This is such an interesting thread.  I never even thought about re-infection from my toothbrush, razor etc.    My gums don't bleed when I brush but still I'm gonna go get some new ones today and disposable razors.  All good to know.
    I was cleared from HCV for 9 mos in 2004 and it came back.   
In 2000 I did 48 week also of int/rib and the virus never did clear.   

[JillLynn]

rainydays........that's gotta be a GREAT feeling.   Happy for you.    Even though we know it's the final one that counts....just being UND is a huge mental and spirit boost.  big hug to you! I'm hoping for that today or tomorrow when I get my week 6 VL result on harvoni. 

[JoeK9999]

Good job Rainydays.
JillLynn yours should be cleared. Praying for the good news!

[JillLynn]

OK.  My week 6 blood test shows I'm undetected~so happy about that.   Whoo hoo!   I know its not official until it's over but it just feels frikkin' great to be undetected!!

BUT....my liver enzymes are higher than they've been in a long long time.   Put a call into Dr. just now.
AST 107
ALT 171
Anyone else on Harvoni have elevated liver enzymes?     My liver enzymes have been in the normal range for quite a while so this is new.

[Doluska]

It is interesting! My enzymes were in the sky, getting slowly down, but after 3 weeks still not Norma , a tiny little bit up from normal. I was told that I am "slow response" I was asking couple of times on this forum - nobody had it, or people didn't want to share. My own opinion - everybody are different, our body  work by it own way. Wait for a final result, hope for the best, if we'll eat our heart and brain - cure will not come easier.
P.s. - what your doc. told about it?

[Rubye]

JillLynn, do you have cirrhosis?
I wasn't undetected until week 8 but at week 4 and since my liver enzymes and labs have all been very good but I'm on S/O. Alt and ast went way down right away.
What did your doctor say?

[sunrise]

Hi everyone
      Went to doc last night. He was really upset as I did not get a test for vl at 8 weeks. It was wierd becausr when I got my lab orders for the 12 week treatment I noticed there was pcr orders for 4 wk and 12 wk. I questioned the patient advocate and she said doctor only wanted those weeks tested. Well he was pissed. He said I could get vl doen bit since im in my 10th week it doesnt really make a difference now. He will do 4 12 and 24 week EOT tests though. He seems confident that I am going to be cured as I am following protocol to the tee. He talked to me about people being so negligent about forgetting meds and actually drinking alcohol during treatment. Said "Dont know why they waste his and their time if they aren't committed to treatment." I totally agree. Why would you even do ot if you weren't going to do it right. So I asked him what of I relapse. He said no worries we will just use a different med. I love my doc... great to hear undetected ladies!!!

[Rubye]

Actually, I don't see how anyone could miss taking their meds for the most part on time every time, or why anyone would want to drink while on tx. At the same time, I can understand it to an extent.

That's too bad about missing the VL. My prescribing doctor didn't want to check VL until 12 weeks so I had my pcp order them for me. If nothing else, knowing I'm undetected has given me that extra impetus to hang in there and it simply makes me feel good.

Not much longer now. She said smiling.

[JillLynn]

No, I do not have cirrhosis Rubye.
I'm waiting to hear from my DR. about the high liver enzymes.  They've been in normal range for a long time.  So this is very puzzling to me.
      anyone have an idea as to why my alt/ast have gotten so high in the last 2 weeks on harvoni?
they were normal 2 weeks ago.

[JoeK9999]

Sounds strange.
That liver panel test is very inexpensive. I would ask the doctor to have it tested again to make sure it's not in error.

[mario555]

About the jump in AST and ALT. Have you eaten, drank or taken anything out of the ordinary? It only takes one product to have an effect. As an example, if I eat a handful of nut 2 days in a row (or ice cream), I get a major jump in my enzymes from 110 standard to 3-400.  I have a friend who is a doctor in an emergency ward and I'd call him when I'd feel pulling in my liver after ingesting nuts/ice cream so that he'd take a blood sample as the ''liver pulling'' is happening. So I'd have a real time read out rather than a blood test 4 days later when everything is back to normal.  I love nuts and ice cream but this stuff will kill me! I would suggest you check what you've ingested in the 2-3 days before your blood test.

[JillLynn]

JoeK......gonna see about getting one Monday.   My drs asst is out until tomorrow.    But I talked to the girl filling in for her today and she said she has seen this happen on treatment but she didn't know anything really.
Mario555.......I eat a lot of raw almonds and cashews so maybe that was it.  hmmmmm....but I've always eaten them so I don't know.    But something spiked it thats for sure.
    I'm going to suggest another blood test Monday instead of waiting until the 15th.  Hopefully she'll agree.       I get my liver enzymes checked every 3 months and they are always low so this was really out of the ordinary.   

[Rubye]

That's so interesting about the nuts and ice cream. It just goes to show what a difference how we eat makes in our overall health.

[Doluska]

4 weeks undetected! Yey! But anzimes still not normal, going down so slowly! But good news are so exiting, that i Told to myself: " you going to be thankful ,and happy!" So here I am. And I wish a good news for everybody!

[JillLynn]

great news Doluska!      thankful and happy sounds great!     

[Doluska]

Thank you, dear! And you see, my enzymes are still not normal! Am I being worried about it? Yes, I am, but I am confident, that our body's are not working strictly by the book! We all different in our own way. Good luck to you and all our pen friends!

[JoeK9999]

Everybody just make note, there are no experts in this forum that I know of, meaning hepatologists or direct researchers with these new drugs. If I am wrong please state your credentials. The few people here, out of thousands being treated do not represent the facts. We have not heard the masses stories. I have come to the conclusion not to pay too much attention to this forum, other than side effects and things like that.

We all know one thing that is a fact. Approximately 95% of study participants in all the Sovaldi combo trials (Harvoni and S/O) were cured. I think my doctor was right when he said he doesn't like taking HVC RNA tests until treatment has ended. He said if positive on a test then a patient has doom and gloom and if negative then maybe a false sense of hope. His opinion is these are the miracle drugs we have been waiting for.
What difference is it going to make as he said. The only true reading is 3-6 months EOT.  The odds are that we all will be cured if we take our medicine as directed.
I still don't have facts on why a small % failed treatment. I'm sure there will be some data on that available in the future, other than the folks who lied and  who skipped pills, split them in half for their partner to take also, and drug abusers/alcoholics while on treatment who probably lost or missed pills.

[Picnic]

Boy , you sure are a downer! No this may not be the Mayo clinic but it sure brings pleasure to many of us that have gone through hell for many years! Larry

[BattleTheBeast]

Boy , you sure are a downer! No this may not be the Mayo clinic but it sure brings pleasure to many of us that have gone through hell for many years! Larry

I am with you Larry, I can't tell you how much I appreciate the input from my fellow warriors!

~Mel!

[JoeK9999]

Larry, Mel and anyone else,
I don't mean to offend anyone. People on this forum
including myself worry based on others on-treatment results.
I am simply stating that we can't worry when we are not experts
and haven't seen all the facts. And yes I like to see others input too.

[mario555]

Sorry Joek, I'm gonna vote for picnic. This site has an incredible amount of knowledge "as a group". Every single piece of literature available has been scrutinized by one of us and reported here. Reading everything on hep c can't be done by a doctor because of a lack of time. As a group we know most of what there is to know on hep c. We are real specialists on "relapse" which is the subject that can cause the most heartaches. I wish I would have found you when I was doing INF because I had never been so lonely! So long live the Dragon slayers!

[JoeK9999]

Well now that you guys/gals are pissed at me,can you find me the stats on why the failures happened? Remember I am one of you. I have had this nasty bug since the 70's most likely.

[mario555]

We're not pissed off, we are galvanized... I guess you just touched a sensitive subject, that's all. We'll be the ones not achieving svr and we'll be the ones helping to find the response

[Bucky]

Well now that you guys/gals are pissed at me,can you find me the stats on why the failures happened? Remember I am one of you. I have had this nasty bug since the 70's most likely.

Well JokeK9999,
I am highly offended as many of us are being seen by the best in the field of HepC treatment. Our moderators are top notch and most have attended the conferences on Hepc management and cures.
My IDS is the department head at a very large and nationally recognized Teaching Hospital/University. The doctors don't yet know why the failures happen, but if you can figure it out you will be in line for a Nobel Prize.

Now....Just messing with you man!  This is a great forum and we are very protective of our members. You do bring up a good point about our backgrounds but since we have walked the road we know a lot. I hope you have noticed that no one has ever recommend that someone go against their doctors orders. Most advice suggested here is just good common sense concerning how to cope with the stresses of treatment.

Bucky

[JoeK9999]

Bucky,
Yeah I know. We are all serious about curing ourselves and I see
so much worry on here it depresses me too. I'm praying in less than 1 year from today, all we will we hear in this forum is "The beast is gone!"

I am not a doctor, nor a medical researcher, but I did read something else very interesting. Standard antibiotics today have a 94 - 95 percent cure rate for infections.
So that says something about the percentages. The only time an antibiotic didn't work on me is when I had a root canal and the dentist prescribed only 5 days and I came back to him with an infection a few days later. He prescribed 10 days and cured. I have a feeling these rates are the same with just about any drug on the market now and the only reason not to cure is because too short a time or the patient didn't take all the medicine. I hope this cheers everyone up. Have a great weekend.

[Bucky]

Bucky,
Yeah I know. We are all serious about curing ourselves and I see
so much worry on here it depresses me too. I'm praying in less than 1 year from today, all we will we hear in this forum is "The beast is gone!"

I am not a doctor, nor a medical researcher, but I did read something else very interesting. Standard antibiotics today have a 94 - 95 percent cure rate for infections.
So that says something about the percentages. The only time an antibiotic didn't work on me is when I had a root canal and the dentist prescribed only 5 days and I came back to him with an infection a few days later. He prescribed 10 days and cured. I have a feeling these rates are the same with just about any drug on the market now and the only reason not to cure is because too short a time or the patient didn't take all the medicine. I hope this cheers everyone up. Have a great weekend.

JoeK9999,
Good point about antibiotics. I am really concerned about the news concerning the Flu Vaccine for this year. I have had it before and it wasn't fun.
Bucky

[JillLynn]

" Have you been exercising lately? Sometimes muscles can release the same enzymes."  this is what my hepatologist wrote me back about my elevated liver enzymes at 6 weeks on harvoni.     And I also just got another blood test to see where they are today (one week later).   I'm so happy to be undetected at this point....(its a psychological boost for me) although I was undetected before and it came back 9 mos. later.....I'm still happy to be undetected again.  the harvoni makes me nauseas all the time ( not to be negative ) it's just the side effect that I am experiencing and I don't get nauseas in my "real" not on treatment life.      I learn a lot from all of you.   I know we are a very knowledgeable group of people.    How could we not be?   Some of us have been living and studying this ever since Hep. C was made known to the public.     A long time.   
   

[Doluska]

Dear Lynn! Bananas help me a lot, as well as peanut batter, taken after the med's, it'covers your stomach and prevents from the chemicals irritating it. And try to eat something  every 2-3 hours, not acidic, but calming, small  portions. Good luck with the treatment!D.

[JillLynn]

thank you Doluska.
I eat them but never AFTER the meds.  Will try that today!  ......  and small portions.   I often let myself get too hungry and then eat too much.    Good luck with your treatment too!

cheers my friend!

xx

[Doluska]

Dear Lynn! Apropos, my ALT , AST still not normal too, after 4 weeks, but thanks God - undetectable!!D

[Proudgmma]

Hi Mike.... I have a question. You mentioned that HCV can live outside of the body up to 42 days. I recently read an article from the Centers for Disease Control (CDC.gov) that the HCV can only live outside of the body up to 4 days.

Can you share with us where you read your stats?

Appreciate it.

[JC]

I've been lurking on the site for the past couple weeks and thought it important to share to support the community. I've had HCV for probably about 30 years, but didn't find out until about 10 years ago. Unfortunately, my son had contracted it as well, probably during childbirth. That was the hardest thing for me. He did end up doing the 1-year torture treatment about 9 years ago and was cured. I wanted to make sure he had the treatment before he got off my insurance. He was about 16 at the time and it was really hard on him. But he stuck it out and all is well.

I chose not to do the treatment because I was older and feared it would be much worse on me. I had options due to my work insurance and could wait it out. Prior to diagnosis, I wondered why I was always so tired...everything in life seemed hard. But I've led a fairly normal adult life, have a good job and have continued to work full-time for over 35 years. My nurse practitioner said as long as my labs were decent, I could wait.

Started taking Harvoni two weeks ago today. I only have to do the 8 week treatment - low viral load. I have been feeling surprising well. One thing I've noticed is I don't have the intense brain fog that I have been used to for so many years. I'm not sure if that is due to what's in the medication or something else. I did get my first headache yesterday. Fine today so far. I should be finished by the end of January. I'll post again if there is anything that will be helpful to others. Good luck everyone and so excited that the time has come where we don't have to use the earlier drugs. Also, insurance approval was a breeze...however, I do have good insurance. All the best.

[BattleTheBeast]

Hi JC,

Thanks for sharing your story and joining in! That's great that your son is cured and you will be next. So happy you are doing well with the Harvoni and hope to here more from you as you continue your journey.

Mel~

[Mike]

Hi Proudmme,

Here's a scientific research study documenting HCV survival in water jugs stored at room temperature for 3 weeks:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCAQFjAA&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3611766%2F&ei=tFaOVJ-bKcf7sASbvYHQDw&usg=AFQjCNEl5ttVCtC0USir-PxcXjukO4T5XA&bvm=bv.81828268,d.cWc

Here's a link to a fact sheet indicating that dried HCV can survive for 42 days in certain circumstances and up to 63 days in other condition:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0CDgQFjAE&url=http%3A%2F%2Fwww.hcvadvocate.org%2Fhepatitis%2Ffactsheets_pdf%2FHow_long.pdf&ei=tFaOVJ-bKcf7sASbvYHQDw&usg=AFQjCNEQoJcoZ-U_fnaAct85Ap0knwiQNA&bvm=bv.81828268,d.cWc

Best wishes, Mike

[Mm]

This is my first post.  It took me a month to decide to join and be a part of a community.  i have faced this alone as I felt ashamed.  It's irrational, I know, but not knowing how I got this nasty virus only made things worse.

I am waiting for my 4 week tests to come back.  At 2 weeks I went from 5,975,000 down to 68 and my liver function tests went into the normal range.  I'm not sure why I was so anxious about the 4 week results, but I was.  I read all of the good advice given by you all and my spirits are lifted.  Many thanks.
MM

[dragonslayer]

Let's cut JoeK a little slack!   I didnt get the impression he was dissing anybody here... I think what he was speaking to was the fact that while there is a preponderance of great information available on these forums, some of the responses can get a little aggressive if somebody's doctor has not ordered the same bloodtest on the same schedule as they have.. By the same token, folks who's treatment details are not  exactly like somebody else's are likely to question their own doctor's orders.. Maybe they should and maybe they shouldnt..  But  as JoeK says, people responding on this board are just other patients, like we all are.  While some have done more research than others, the fact is, medical advice is not supposed to be given here... This is supposed to be a support board; not a 'you need to do xyz, etc' board.  These drugs are new, obviously, and some doctors use the same blood test regimen that they used to use with Interferon and drugs of that generation.. This is a new game now..  New rules.. and various doctors will approach things differently.  SVR12 and SVR24 are really all that matters. Some doctors, as JoeK said, have ordered tests more frequently had found it eases their patients state of mind; others have found it causes more angst.   So, lets all respect and support each other the best we can, and make our suggestions in a helpful, non biased way without trying to put down other folks' treatment and monitoring plans simply because they dont look the same as ours. 

Ok off my soapbox now.  I just didnt think JoeK deserved the little bit of lashing hes gotten.

[BattleTheBeast]

Hi DS,

I think the posts you are referring to are a couple of months old. So just wanted to bring that to your attention. I'd also like to say I feel it was settled in a very kind, supportive way, with no hard feelings.

Personally I feel like we are all very supportive of each other. Once in a while something will come up on here that touch a hot button but hey we are all dealing with a very stressful situation. In my humble opinion I can honestly say that overall I haven't seen anything but a bunch of concerned people trying to support each other.

Mel

[bridget]

MM,
That's great news on the drop in your viral load! I hope you see UNDETECTED on your next result sheet.
BTW, yes, I felt ashamed at one time, but put it behind me. I don't discuss my HCV with anyone other than my husband, but this community helps a lot.
Good luck!

[dragonslayer]

Mel. I swear, I was not referring to any specific posts.  Really! Just in general.

[BattleTheBeast]

HI DS,

I went down the thread you had replied on because it appeared to be what you were referring to. Just wanted to bring out the positive from that interaction and how long ago it was.

It's all good and I agree we should all be supporting each other and I normally see that which is what I was pointing out in my response.

No worries, just keep up the happy positive thoughts and we will all get through journey in one peace! (yes I misspelled on purpose)

Mel

[JoeK9999]

One thing I want to note here. When I spoke to Gilead months ago, they made it clear that "our" doctors would make the decision of 8 , 12 or 24 weeks based on our individual criteria. They stated it was not a test while on treatment based criteria like
past protocols were where they lengthened times if the test results were not what they liked. In other words if you are scheduled for 'x' weeks, that's what you will get and finish, then you will have to wait 12 weeks post treatment for your outcome. We may not like that approach, but that comes straight out of Gilead's mouth.

We could get a test everyday and it could be different. The proof is with Lucinda on the trials. At 4 weeks undetected, at 6 weeks detected and at 12 weeks post treatment undetected. I can still feel the effects of the meds in my system 2 weeks after EOT. I don't know if they were still active or they just wacked my body.

I have no idea what my 12 weeks post test will be and yes I have anxiety about it,
as we all do, but all I we do is wait and see. At EOT it is out of our hands.
All we know right now is the results of the clinical trials of 2000 people.
In the worst case scenario, we all know there are great strides going on right now in research for other cure protocols that will be hitting the market soon.

 

[BattleTheBeast]

Hi Joe,

Thanks for sharing that, I like many others are choosing to follow what my ID doctor thinks is the best approach for me to beat this infection. Testing frequently or not may be done for various reasons and each physician has a different approach. I think the key for me is to have a doctor I trust and following his directions, that's what I am doing. When I don't agree, I ask him why and he explains until I do.

That works for me because he is the one with the expertise in this field and if I didn't trust him he shouldn't be my doctor.

It's such an emotional thing, to be sick in the first place then to deal with the stigma attached to Hep C well that just makes it more emotional. Today I am in treatment and my fog has lifted. I am going to enjoy that for now along with the break my liver is getting and keep taking my TX, maybe one day later this year I will be SVR . I agree "all we can do is wait and see"

We all want the same thing for ourselves and others.

Mel

[lporterrn]

Hi Everyone - This topic digressed in wonderful ways, but it is hard to follow. I thought Mel's words were good to end on, so I am locking this topic. If anyone feels they have more to add, or want me to unlock it, just report this to the moderators. Thanks for great stuff everyone!