Viral count 197,000/2 months after 72 weeks YIKES

[AngelsOnMySide2]

Could this be a real relapse, or just a false positive....I'm going in next week for another test?

What do you think???

Any and all comments PLEASE!

Donna

[portann]

I don't know if it could be false positive. I thought false positives were related to antibody tests, not viral load ones. I think I recall someone mentioning certain possible errors with some of the very sensitive viral load testing but it may have concerned very small numbers, not large ones like 197, 000.

I don't want to personally influence you in how to interpret these results one way or another, since I don't know.  Someone here better placed to understand  this can help. If it were me faced with this, I'd  go into a healthy denial and not jump to conclusions until having all the facts.The lab could have mixed things up. I'd  get myself re-tested (probably twice more!) before going into a tailspin. That's not true - I'd go into a tailspin anyway but I would take busy steps to rule out error.

How soon after your end of tx did you test for viral load? Is this your  first post-tx test?

[portann]

sorry, i just noticed in your heading that you're two months post-tx.

[can-do-man]

Im so sorry to read that, but it does look like a relapse. But do get retested. I've been wrong alot of times and god only knows i hope i'm wrong here again.

I know this felling, like a swift kick in the gut. If this is a true relapse its not over just a setback, you had to do your liver alot of good. With the new drugs that are in trial soon we will all win.

I'm hoping to start soon in one of those trials, give yourself some time, keep your head up, and a smile on that pretty face of yours.

I love your handle, and its so true angels are on your side.

Wishing you only the best

cando

[nygirl7]

I had a false positive after 72 weeks but my number came back at "60" on the PCR.  All of the other false pos I've seen have been in that area (which is why the doctor felt they were false in the first place) so that makes me really think this unfortunately is a relapse.

Of course - DEFINITELY get retested to make sure that it is.

You know how hard we will be hoping for you.  Again, I'm so really very sorry.

[portann]

I see from your profile you're all set to move to California next month. Do you already have your new medical people set up for when you arrive?

One way or another, you have so much to look forward to, by moving close to your granddaughters (and yes, your kids, too).

When I started treatment in May, I had no idea that if I didn't clear or if I eventually relapsed, the medication can reverse liver damage to some extent. That's what my husband often says to me now, when I start feeling anxious about my prospects for SVR. I get mad at him for saying it because I want more than that and feel like he's patting me on the head but really, it's true.

[HCA]

Didn't they do a an LFT along with the PCR?
If your AST or ALT have become raised again it would confirm that it is relapse.
Cant you phone the doctor's ofice and ask what these two levels are now and what they were during treatment?
I have relapsed too ,so I can empathise with you.

[charm27]

If this is a relapse..I am so sorry.......however hopefully liver damage was reversed to some degree.

I know how awful you must be feeling if this is true....
Im sorry but hang in there.........

Charm

DAM I HATE THIS DISEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[zazza]

Being a 72-weeker myself, my heart breaks for you. And reading your journal, I see you had quite a difficult tx ride as well. You are just starting to feel better post tx and then this - it *****!

It looks like although you dose reduced during tx, you were still on weight based dosage due to weight loss. Am I reading your journal correctly?

You certainly did all you could to fight the virus. It beats me why they still have to have those control arms with placebo in the trials. Don't they know enough about the response rates with SOC already, so they wouldn't have to put people through this?

Take care! My heart is with you.

[sfwandwow]

relapse is just another word for hitting it better next time, i was down when i relapsed but iam great now and living to the best i can..

[Deb_c430]

Those aare the hardest words to hear, I am so sorry,  after 72 weeks especially.  My heart goes out to you. breath deep and carry on.

Logically I can understand why the placebo, but heart wise i think it is cruel to put someone through that, especially for that long.

Best Whishes

Deb

[redrodeo]

Personally I've had a false positive, so I know it does happen. It was with a PCR test and the results came back saying 18,700,000(18mil) I totally freaked. Had them do a retest a few days later. That test showed I was still neg......So it does happen. There is a high persentage of fALSE POSITIVES WITH pcr. Although my LFTs were still low. How are yours.
Red

[nygirl7]

It is great advice to check your liver function levels.  I was supposed to have my 2 year PCR this month but it's been busy and with an ALT of 8 I figured I'm ok.......

That just might give you some indication? Did you call the doctor?

We're all hoping for the best (I know I said that before but...we are)

[Bobby1952]

    Get a retest. Never make a decision based on one PCR. I had a false positive at the end of treatment. It was a lot lower number about 4,000 copies per ml, but I would still get it checked.

Good luck

Bobby

[AngelsOnMySide2]

Sorry I wasn't here to answer you all yesterday, but with moving in 2 weeks, things are pretty crazy here, to say the least...

My heart did fall when I was told the news, but with all that's going on in my life right now, and how good I feel, I'm trying very hard to think positive.  The NP did say she could hook my up with someone in Los Angeles for a trial if I wanted, but we shall see.
I believe his name is Dr. Poordad at Cedars.

My AST is 22 and my ALT is 21

The Dr wants me to come in next week for a retest, at his office.  This test was done at my local Labcorp, not that I'm saying they are not capable, but it did take them almost 2 1/2 weeks for it to come back. I've never waited that long before when it was drawn at the doctors office.

Hoping for the best now, and either way my liver did get a rest...and a long one at that!

I will keep you all informed of the outcome, and I thank you so much for all your compassion...I haven't told anyone here except my husband...I really am not in the mood for their sympathy. Especially because I was so sick for so long, and none of them stepped up to the plate to help us here.  My husband has an early onset dementia, and it wasn't easy for him to take care of me, when I am the one usually taking care of him...he did it, but not without setting him back a bit too...

With that said, I feel like I got that off my chest too...thanks for listening, you're all the best!

Donna

[GSDgirl]

I am in no way the most knowledgable in here BUT with those great alt & ast numbers I think luck just might be on your side.  Please post your next results.  I am hoping & praying for you.

Denise

[nygirl7]

Donna,

Wow you have so much on your plate. With all that going on I don't know how you managed getting through the whole thing in the first place.  You are a VERY Strong woman.

Your alt and ast are just perfect - that's a good sign and it can give you some hope.  As to IF you did relapse - a trial might be just the right ticket because you don't need to treat nearly as long...so that is something to consider, but we are going to just keep believing false pos false pos false pos!

I am going to keep you in my thoughts and pray for that false positive.   Keep being strong - this whole thing is so hard (even when it's over as you see) but you have done such an amazing job that I just know it's going to turn out alright.  It has to!

debby

[zazza]

What did your ALT and AST use to be before tx? I agree they are looking good now.

[Deb_c430]

so much can change levels in in people with out HCV.  Mine seem to go up with tx,  pre tx they were normal. same with vls, they fluctuate a lot.

Cedars is a great hospital, I am not far from LA if I can help in anyway let me know!

[wyntre9]

I'm praying it's a false positive.

Having just got my 6 month post tx pcr <10 and having gone through a horrible last 6 months of treatment I understand how you must feel.

Last week I got results showing I was positive for hep c antibodies and i flipped out, thinking it meant i was still infected until i realized it wasn't the hep c quantisure test.  I got those results this past saturday.

Get retested ASAP and keep your chin up.

[Deb_c430]

antibodies will always be positive even after SVR!   hoping all is well

[granitekonig]

You are definitely a strong woman! Much respect to you. Even IF you still have the virus, there are promising treatments coming up AND your liver levels look excellent. I'd say you're right on top of things. =)

[zazza]

Are you sure your liver enzyme levels were really normal before tx? That is what they told me too. I used to have ALT between 30 and 45, now with SVR my ALT is 9.