unDetectable /detectable

question for the group how often do you get your bloood tested?

at 12 weeks I was undetectable at 20 weeks there was what the dr called a blip on the screen mean I was detectable but he was not concerned, at least not yet. I am not a stats guy and don't ask for copies of my test so don't ask for specfic numbers I just wanted to know if others had  gone from un to detectable back to un durning treatment. And now often most of you get tested, I get blodd test once a month at this point.

[52TELE]

Hi Timedog , thats a really good question and I am interested in seeing responses on that myself. I know that nygirl , all though not UND ,had a lower count at her 12 wk than at her 24 wk , but the difference was very small.

[Hepkitten]

Hubby got once a month till 6 month mark, now it's going to be every 2 or 3 months. He was undetectable at the 2nd month I think

[sfbaygirl]

How are you doing? Did you get on the Neumega? Are your platelets up now?

[MissMiss]

I posted down under Procrit SX.

Turned out that my platelets were 84 after they verified them and didn't need the Neumega.  But that was after two Neumega shots which caused me to crash big time.  102 fever for a week and the drastic drop in HGB.  I couldn't remember when you left for paradise, if I had already started the Neumega or not.  Anyway, it was a very bad experience and am still recouping.  Blood draw today to see if I am above 7.7.  

Two more Peg and I will be finished.  Praying for a miracle!  Thanks for asking.

miss

[mikesimon]

Yes indeed, I made roughly 6 thousand bad choices myself. I apologize for being a jerk - now, that's 6001 mistakes and counting. Mike

[52TELE]

Will you stop that? Our somewhat collectively depleted brains are full and we can not continue to process all this information.

(LOL)just kidding.

[mikesimon]

How in the world did you get infected with HCV? I would have thought your intense obsession with all things healthy would have rendered you immune to every disease. I just can't figure it out. Mike

[GrandOak]

Because my tx has been one big cluster funk since first doc mucked it up big time by simply cutting Riba instead of adding Procrit, my entire tx schedule has been all over the board.  Add to that frequent visits by Brian Fog, BTW thanks FLguy for restraining him down there awhile, and it gets difficult to even remember.

I think we were supposed to do a 4, 12, 24, 48, and 72 wk VL test.  CBC is now bi-weekly, unless we add or subtract meds from the HCV cocktail which usually results in more trips to the vampire den to see what effect the changes have had on me.

As for UND, I'm still waiting to break the million count before even setting my sights on UND, or wondering when SVR will be attained.  I think I got the rabbit strain of HCV.

[MissMiss]

After my 24 week test Doc said no more for a year, that ins wouldn't pay.  I researched a bit and want one 4 weeks after last Riba.  We finally had a long talk and he agreed to 4 weeks but "ins might not pay".  Talked to ins who said if he orders it, we will pay.  Lots of times docs just assume what is covered and what is not. I want to know if I relapse since it could make a difference in some choices I make.

I'm curious if the 6 month test shoudl be exactly 6 months, or is 5.5 or 6.5 months just as good.

Good question, thanks for asking.

miss

[Snookmiester]

Not to discourage you, but you need to contact your Dr and ask what kind of "blip" he is refering to. If you where in fact undetectable at week 12, then at week 20 showed virus, then you quite possibly had a viral breakthrough.. You should asked to have a retest immediately to confirm or rule this out.
Another member here,(Genedog), went through a similar viral breakthrough.. You really need to discuss it with your Dr and asked to be retested..
On another note, why where you tested at week 20? Most follow the week 24 rule?

[timedog]

Sorry I guess I am not getting the anwser I am looking for bluntly should i be concerned if went from undetectgable to what the dr called a blip of being detectable. I am sure I will know more when tested again in a month. Just wondering if I should be freaking or this is within the range of norm.

[NYgirl]

said Back in the early 80`s i thought cocaine was just a powder derived from a plant,which it is,i didnt know it would wind up killing me with hep c,


Ditto...you are NOT alone in that.  I didn't have any idea putting a powder up my nose could give me a SERIOUS disease in a million years.

Baseline was 568,000
I was tested at 4 week because I ASKED to be (411)
I was tested at 12 weeks                     (419)
I was tested at 24 weeks                      UND
I am on week 46 this week will be tested at 48
Then I am not sure when I will be tested until week 72 (but probably not before then).

Hope that helps.

[jmjm530]

Viral load testing:

Week 1, 2, 3, 4, 5, 6*, 12, 24, 36, 48, 54**?; 6 weeks post, 12, weeks post.

In the future plan to test at 24 weeks post, 1 year post and maybe 2 year post, or sooner if any enzyme abormalities show up.

* Non-detectectible

** end of treatment

[MissMiss]

Wanna make sure I understand.  I respect your research in the pcr testing too.

You suggest one at 6, 12 and 24 weeks post tx?  Not again til one year post?

miss

[jmjm530]

24 weeks (6 months) post is SVR. Some doctors don't even test beyond that, but the convention as I pick up here, elsewhere, and with my own doctor, is to follow-up the 24-week post treatment viral load test with a 1 year post treatment VL. Actually, I haven't talked to my doctor about any testing beyond the 1 year post,  but I do know that some here have been tested at 1 year post, 2 years post and even beyond that. The odds as I understand of staying SVR after being non-detectible for one year post treatment approach 100%. At a certain point beyond that, the odds or reinfection probably are greater than the odds of relapse.

-- Jim

[iceboy]

Hi there

It depends a bit on what type of tests they are doing. There are different sensitivity types. This is how my tests where run and the outcome:

week 0 VL 1200000 (quantitative sensitivity 600)
week 4 VL 4000 (quantitative sensitivity 600)
week 12 undetectable (quantitative sensitivity 600)
week 24 Detectable (qualitative sensitivity 50)
week 26 Undetectable (qualitative sensitivity 50)
week 31 Waiting results

There could be a error in either week 24 or 26 test.(it

[NYgirl]

I agree with above - if you have had viral breakthrough...it's important to know it right now what you are talking about.  Between 12 and 24 being such a crucial time as if you are NOT Und at 24 they generally discontinue tx.

I'd be all over his azz on the phone finding out what the H3LL that means.  

Are you sure he was referring to like the vl and not something on the cbc such as a raise in enzymes or something?

You got to find out WHAT he is talking about.

Cause if you have had a viral breakthrough will he stop you IF you aren't clear at week 24?  With a 12 week VL of 419 my doctor said he wouldn't stop me before but if i DID have them at 24 I would have to stop.

[painterlady13]

While I just started, my doctor has me scheduled for blood tests every week for the first 6 weeks then every other week for the next 10 weeks then once a month till 6 mos after end of TX. I Just did my first blood test yesterday since starting treatment and will get copies from my GP here and copies of ones done in May so I can start keeping track myself also.

[iceboy]

Sounds about right painter is saying for normal CBC and enzyme test

[goldyn]

You need to know the numbers, if you are showing a viral breakthrough, you need to discuss this with your doctor to get a jump on it right away maybe by upping your meds, to kick it back out again, i woulndt take this lightly, you have almost half a year invested in this call back and find out what exactly is this blip, i would get a retest quickly and go from there....

[GrandOak]

I guess the answer would depend upon which tests were used.  As previous threads have mentioned, no test is capable of showing that absolutely no virus is present.  All can only claim to not detect any to the level of their particular degree of accuracy.

So, it is possible that UND may have had virus present, but just under the radar screen for the test to detect and since then there has been a slight increase in the virus where it now shows a trace amount present.

As I've posted before a time or two, my VL went from 1.8 mil at wk 12 to 2.9 mil at wk 24, but I also have been wrecking havoc on my body playing with Procrit and Riba dosages in an attempt to recapture the proper tx dosage of Riba without going into severe hemolytic anemia.

If doc is agreeable, you may want to go for another test, or test using a method which has a higher degree of accuracy (i.e. lower threshold of detecting virus) if for nothing else to put your mind at ease.  Just a thought.

[NYgirl]

Is that why they are letting you continue on with treatment although you show such a high VL (or any) at week 24?  Are they justifying because of the rescue drugs not being prescribed?

I was always told that no matter what I had to continue until week 24 but if I showed any virus then...that it was automatic cause to be disqualified for treating any longer.

Of course I finally got my UND somewhere between week 12 and 24 so I am continuing but...I have to continue to week 72 (also because I have two genotypes floating about cause I am one greedy girl and wanted to have all of the fun!)

;)

Debby

[timedog]

I did discuss it with my Doctor, I always do, he was not concerned yet. I don't think there is much else to be done but wait for the next round of test. I am at 1200 riba a day and 180 on peg upping is not an opition. Let's face it Iknew I had about a 50% chance of this treatment working. I am going to be bummed if it doesn't work but it was always the risk I knew I was taking. If it doesn't work I know I did everything I could do. I really don't think we can control this treatment thing other then take the meds, eat as healthy as I can, don't drink, don't take drugs.

[GrandOak]

Both the proper dosage of rescue drugs not being used and that I am handling the sx's quite well, at least as compared to most, of course with the addition of the ancillary tx's for anemia and now neutropenia.

So far I've not had to go to battle with the insurance pencil pushers as my doc has been able to provide them with the proper details to keep things moving along.

I think it might change though after regular 72 wk mark passes and I am hopefully continuing tx.  The key point now is about 10 wks from now when we check to see if VL has dropped 2 logs from the original 72 mil I had when I began this trip through wonderland last January.

[bobbyullc]

one of the biggest mistakes i made is not getting a 4 weeks pcr. i did not have access to this site. other than that the 12 week and post pcr are the only ones that really matter.i think.
bobby

[goldyn]

You know your right we really dont have a  whole lot of control,but i have heard of the docs  upping the riba to 1400 for a couple of weeks ordouble dosing for a couple of weeks just to shake it off guard...but you know what maybe all you need to do is retest,and it will all be better then, and you wont have to worry about upping anything, thats my hope for you.......

[Dale_Ray]

From what my doctor told me and what I have read they are looking for a two and one half log drop at 12 weeks for us 1A's and then undetectable at week 24 and that is according to my schedule. However a blip on the screen could be a blip in the test. Retest is the best thing to do. I was at 824 from a million something at week 12 and my doctor was happy as could be. I won't test again until 3 months post and 6 months post treatment. He says that is the the manufacturers directions and we would follow them. His rate of cure has been higher than the national average so I just trust him. I wouldn't know the difference if he didn't tell me anyway:) Dale
PS He always tells me that the misery I am going through is doctor induced - I always agree.

[OnAPrettyPoison]

I have/had 1A and was tested at 12 weeks (undetectible), 24 weeks (still undetectible), at 48 weeks (undetectible) and will test in 2 weeks for a 4 week post treatment, again at 3 months post treatment, 6 months post treatment, 1 year post treatment, and again at 2 years post treatment.  They want GP to do test every other year after that at my regular physical.  I pray my post treatment tests are also undetectible.  My doc was looking for a 2 log drop at 12 weeks or I would have changed meds to infergen RIGHT THEN.

[beamishboy]

Very interesting book by fellow canadian,Wade Davis-"one river" examines cocoa culture in s. america and other psycho-active drugs,but also great adventure /travel story..Davis is ethno-botanist associated w/ nat'l geographic and one of my favorite can.. writers .Also : farley mowat-"the boat that wouldn't float" is a great laughfest! "a whale for the killing" is terribly tragic tale...my lefthanded lameazz apologys for being on yur case.......Hey i also watched 'This hour has 22 minutes" always !!! and sometimes w/out a joint stickin outa my mugg....PEACE& thank you mikesimon for inspiring some humblepie ,now i'll shut my piehole.....