Return of virus after 1 year

[suly]

I am curious how many geno type 2, undetectable at week 4 and continued until 1 year post treatment, are out there.  I want to know who did it again and was successful.  Feel prety defeated after loosing to 90% odds!  I was treated with ribo and peg, and was not fun to be around for those 6 months.  

[annieCinMD]

I just want to tell you how sorry I am to hear this. It's a huge letdown. I'm a geno 1a and I'm still treating so I can't answer your question. I'm sure someone will chime in that's a geno 2, even though you guys are rarer than us 1s. Good luck.

[alagirl]

I wanted to be certain to understand what you're saying.  You treated for six months, then the virus came back at a year past your last treatment date?  How many times and when did you test during that year?

[epiphiny]

I'm sorry to hear your news also but curious to know what test was used when they tested your Viral Load (ie the lower sensitivity of the test) and also how many they tested after end of treatment.  Was is at end of treatment, then 12 weeks later, and then 24 weeks later?

My first treatment didn't work either (G3) so I fully understand how ou are feeling right now.  Important thing is not to give up hope!

Epi :)

[suly]

Thanks for words.  I was tested throughout tx, at end of tx, at 3 months post and at 6 months post - all undectable.  The test name is Heptimax.  Test for less than 5 IU/ml.  Is there another test?  I thought I had a very updated liver doctor.  The viral load is very low.  About 3 months ago I noticed systems - back to needing afternoon nap, rashes and red dots, and too much hair in sink after shampooing.  I, with thousands of others, lost my job in April and with that, secure health care.  Do have COBRA, even suplimented so it's reasonable until Jan, outrages from Jan to Oct.  So am feeling if I'm going to do this **** again, don't have much time to think about.  Would really love to hear from anyone out there, geno type 2, relasped, then more than 1 year post treatment without return of virus.  Just trying to make my decisions easier.  Not having much luck finding studies on this one.

[GreatBird]

You said that your current viral load is "very low." Wondering how low that is. Have you had it tested again to make sure it wasn't a false reading?

[apache1]

Well I am Genotype 2b

I was UND at 4 wks and all thru tx.
Also UND at 4. 8, 12 16 and 25 week post treatment.
Like you, I also use Heptimax on most all of my VR tests. My SVR was by Heptimax

Officially SVR at 6 month post, has a 98+ % of SVR by most all studies.
Some studies say 6 mo post und is 99% durable.

You are the first I know of on many HCV forums, and my support group to be SVR 6mo, then relapse.

Could you have been reinfected ?

Did you do a repeat test to rule out a false positive ?
Many times a low VL means false positive. I Have seen false positives happen more than once after tx. One girl I know of had the same as you 1 year after tx positive pcr and that turned out to be a false positive.
My Dr always re-tests a positive result if it had followed a earlier negative VL test.

Very sorry to hear this about you.
Please get a re-test if you haven't already.

jmo
apache

[suly]

thanks again for the words.  I see MD the end of the month and know he will retest.  But after a few of you mentioned, I'm going to call to see if I could get rechecked before appointment.  My concerns is also symptoms, which is why I'm not questioning results.  About three months ago I started again with that heavy wad of hair while shampooing, coming home at 2 for a nap, and the increase of those red dots on my abdomin (abdomen).  However I am hopeful it is a false positive.  As for reinfection - not possible.  I am an obsessively health minded individual.  I practice yoga and meditaion daily, truely eat 8 to 12 servings of fruits and vegtables each day, work out at the gym 3x/week, and typically live on organic veges (often out of my garden).  And have had this life style for over 30 years. Finally found a few studies, there has been 2 other cases of SVC until 1 year post for geno type 2.  Both had illness and were given immune supportive drugs to heal.  I don't fit that catagory either - I'm seldom sick.  Maybe my imune system is just too active, found those hiding pockets.  But I am so far removed from any possible reinfection, that the whole world would have to be at risk from the air. I have a fear that's what others will assume, just as it is assumed there was a history of drug use and ignore blood transfusion infections.

[GSDgirl]

Hi, sorry to hear of your results, hoping it was a false positive amd there are many here that were not IV drug users.
I am / was geno 2, one year post VL test was in April.  Still und, so SVR.  My hair is still trying to grow back in.  Sometimes I think I am loosing too much also.

The heat seems to give me those itchy red bumps, never noticed them before or during TX.  As far as naps go..............I have taken one the past 3 days and it feels great, hubby doesn't think too highly of it but too bad.

Good Luck
Denise

[apache1]

quote by suly:
My concerns is also symptoms, which is why I'm not questioning results.  About three months ago I started again with that heavy wad of hair while shampooing, coming home at 2 for a nap, and the increase of those red dots on my abdomin (abdomen).  
=============================================================
Hair loss is usually from the interferon, not HCV.
Not uncommon to get those feelings/symptoms and think its a relapse, especially before doing a post tx pcr.  
Feeling tired, rashes, pains, your not alone...welcome to post hcv.

You say your VL was low, what was your exact Viral Load iu/ML of the last Heptimax in question?


You are SVR, and my bet is a false positive.  ;)

apache

[Marcia2202]

Did you actually have a positive test or are you just suspecting that it could be positive, because of the symptoms you are experiencing.

It is VERY unusual for someone to relapse after 1 year of having had a SVR.

[suly]

my low VL is 120.  Can't get much lower.  I just got OKed to retest.  My initial symptoms which started me just finding a position with medical insurance ( 6 yr ago)were hair loss (my family is knows for dying with full heads of thick hair),  tired and run down, digestive changes and skin rashes.  I was also going through menopause so really thought most was due to that.  Plus I had lived in sub saharan Africa for a few years in the 90's and suspected parasits.  I was very shocked to be diagnosed with HEP c.  But all symptoms fit (but then most any symptom can be added to hep C).  Being in general very healthy I declined tx until 1 1/2 years ago when I just wanted this virus gone - to just no longer have it any part of my life.  I feel healthy living can prevent catastroophy but it does not rid the virus.  Also my liver biopsy (5 years ago) showed level 2, prety insignificant damage.  At this time my liver enzymes continued to be in the normal range but the viral load was sky rocketing.  So began tx, hated it but did appear to rid the virus.  Will go and get retested tomarrow - hate results that take two weeks.  Was also wondering about redoing liver biopsy.  How often does that typically occur?

[apache1]

Glad you are going in for a  new vl test. Like I said, my bet is on false positive ;)

As for another bx, when you do prove to be SVR, another bx is not really needed.
After SVR, you can probably count on some healing to maybe 1-2 stages better. Some experts say more.
You said about your bx, "showed level 2" ..... not familiar with level ?... most bx use  'stage'  for liver damage and  'grade'  for amount of inflammation.  


Only time I have read about post SVR with a valid, reproducible, low vl like yours, is from the occult hcv studies by 2 or 3 particular researchers. Many experts are still debating the existence and validity of occult HCV. Highly unlikely you have 'occult hcv'

A very low VL of 120iu/ml = very good chance of false positive from testing equipment contamination. Most relapse with VL of hundreds of thousands or millions.

apache

[alagirl]

We have had people on this forum who had low false positive viral load results that were negative upon retest.  So before you despair, get retested.

The fatigue etc, can be from many things, including damage already done by chronic hcv before you treated that is just now showing up.  Could be an interferon related autoimmune issue.  I'd get checked out thoroughly.  Crossing my fingers for your retest.