Hep C Discussion Forum

Tig · Admin

RE: Still Detected

Canuck · Guru

Hey Rainy!!!!!!!

That's the news we want to hear!

UND already! And downward directions for your LFT's! https://www.youtube.com/watch?v=a9NIZOvfKpc

Don't sweat the enzymes, it is very early days yet. ALTs and AST's can flucuate.

Man! She even did up a sig line - Yer on a roll girl! biggrin C. https://www.youtube.com/watch?v=mzAfTmC3It0

JimmyK · Guru

Oh that is great news! Fact is the DAA's are working as they should. The Enzymes will come down if Hep C is the elevating factor.

JimmyK

RainyJ · Member

Canuck,

Heard back from the Dr. I did a signature line finally and put the lab results. 5/4/17 UNDETECTED :) So she ordered a Hep B test, I was exposed to it in the past but my body cleared it and I was negative prior to starting treatment. She mentioned about how hpb can reactivate sometimes but she doesn't think that's the case I'm praying it isn't so. She thinks maybe my inflammation is just slow ? Not sure, doesn't really make sense. They should have gone way down but she said she will look into auto immune issues if the ALT and AST don't go down by end of treatment. Another hurdle but at least I'm undetected. woohoo!!!

JimmyK · Guru

Greetings,

If one is found to be detected, at week 4 of Treatment, then the recommendations are as follows.

The assessment of HCV viral load at week 4 of therapy is useful to determine initial response to therapy and adherence. In phase III clinical trials, almost all patients who did not have cirrhosis had undetectable HCV RNA level at week 4; those with cirrhosis may require more than 4 weeks of treatment before HCV RNA level is undetectable. There are minimal data on how to use HCV RNA level during treatment to determine when to stop treatment for futility. The current recommendation to repeat quantitative HCV RNA testing at week 4 of treatment and to discontinue treatment if the quantitative HCV RNA level increases by more than 10-fold (>1 log₁₀ IU/mL) is based on expert opinion. There are no data to support stopping treatment based on detectable HCV RNA results at weeks 2, 3, or 4 of treatment, or that detectable HCV RNA level at these time points signifies medication nonadherence. Although HCV RNA testing is recommended at week 4 of treatment, the absence of an HCV RNA level at week 4 is not a reason to discontinue treatment. Quantitative HCV RNA level testing at the end of treatment will help to differentiate viral breakthrough from relapse, if necessary. Some may choose to forego end-of-treatment viral load testing, given the high rates of viral response with the newer regimens, and to focus on the week 12 posttreatment viral load. Virologic relapse is rare at 12 or more weeks after completing treatment. Nevertheless, repeat quantitative HCV RNA testing can be considered at 24 or more weeks after discontinuing treatment for selected patients."

Guidelines attached below. It is good stuff to be aware of. If still detected at week 4, the attached Guidelines are a tool you could use to insist on a week 6 blood draw. Just to ensure a 10 fold increase is not an issue. I am not in any way saying this is the case with you. I am simply passing on the needed ammunition that defends your request for a week 6 blood draw.

Canuck · Guru

So, are you sure the liver center doc said your 4 week ALT/AST actually went UP? (from your pre-treatment ALT of 140 and AST of 98)? Perhaps she said (or meant) your ALT/AST still remains elevated, or is still the same, or, perhaps she was just ruminating out loud that she was a bit surprised they had not come down as much as she had anticipated yet?

Just because some peoples' numbers do not go down as fast as another person's numbers, does not mean the treatment will not work, I am afraid you HAVE TO wait to see these numbers dropping. I am surprised she did not qualify her ruminating with some statment to that effect, knowing that she should be trying to reassure you. She should have expressed to you that it does not mean the treatment will not work. All the stats on epclusa show how very effective this regime is and especially for GT2's

Your ALT/AST's were fairly high, some people's LFT's do not normalize on a "pre-written/pre-determined" time schedule.

I would phone on Monday, both the PA and/or the liver center doc (as necessary), and ask both places to tell you on the phone what your ALT/AST was? And also, inquire whether the VL has returned back yet - whoever has the results and will be the most helpful in assisting you. Rather than waiting for them to mail you anything, or hope that they do not forget to call you about the VL.

You are fretting without this info, so you need the info as soon as possible - they should understand your fretting and your need to know.

If you find out (maybe Monday by phone) that indeed your 4 week ALT/AST IS the same as your pre-treatment (or higher), then ask for a repeat ALT/AST/LFT's at 6 weeks (or 8 weeks). If you find out (by phone, possibly Monday or Tues) your VL has not started dropping, then ask for both the ALT/AST/LFT's, AND an extra VL to be done a 6 weeks (or 8 weeks). Again ask the office/person first (whom you think will be the most helpful to you, perhaps the Greg PA who originally had you booked for an 8 week VL anyway) for these extra tests. You need the reassurance.

I am still of the mind that your enzymes and VL ARE (or soon will be) decreasing, that the declines you pine for, ARE coming, but are just too slow for your comfort level.

Find out what you can, as soon as you can, for your own peace of mind, ask for the extra testing if necessary/if an extra 6 or 8 week draw will be allowed.

Even people who go UND almost instantly, still fret! It is an occupational hazard when you have HCV and are getting rid of it.

Try phoning on Monday. C.

RainyJ · Member

Canuck, Yeah, I was schedule to have the four week labs which I did on 4/28 and it included the ast/although which I can't remember the numbers just that doc said they went up. They did a genotype by mistake instead of viral so when I went to doc appt for lab follow up on 5/4 at the docs office she realized the nurse screwed up and didn't order viral load so she sent me back that day to have vl so I'm hoping to hear via phone on vl and get the enzyme numbers which I know went up but can't remember the numbers. I Wes so disappointed I didn't think to have them make me a copy of the test so I'll get it in mail soon. They automatically send the pt a copy of the blood work. The first doc I saw in office was Greg who was a PA liver guy and he orders 4,8,12 week labs but he works out of a different office so I saw the actual physician at the liver center and she does labs differently than the PA. I'm guessing that's why I'm not scheduled for another lab until end of treatment the end of June. The waiting truly is the worst. I'm one of those people that can't get stuff off my mind and keep thinking about it and drive myself nuts. Lol. Oh well.

RainyJ · Member

Tig, yeah. I guess I'll have to wait and see. I guess the being still detected sucks but I'm hoping that will change. The fact that the enzymes went up instead of down seems to bother me more I guess because the liver Dr didn't seem to understand that so it has me worried I guess.

Canuck · Guru

Rainy,

So, you had a known pre-treatment VL (and, are now you hoping to find out the results of the 4 week VL, maybe as soon as Tues - they will phone you?), and the other 4 week lab work, such as your ALT/AST's, etc., they are mailing to you??

So, for now, all you know about your 4 week labs, is that "only your doc" has seen your ALT/AST (but did not tell you what the ALT/AST was), just "told you" they were still elevated?

It also seems the "plan" was for you to have a 4 week VL, and a 12 week (EOT) VL, and then, post-treatment, an EOT+12 weeks VL, and EOT+24 weeks VL (as are commonly done), is that right?

Being that you are worrying and wishing for a fast decline in enzymes and VL, and IF it turns out your doc tells you you have not had a 4 week VL drop (I would be surprized if your VL has not budged! - but, like we have all said you should not be worried about it), then you can ask them if they would please do another (extra) VL on you, just for re-assurance purposes. They might. Same for your enzymes, if they worry you, ask if those too could be repeated, just so you will not be fretting about all this so much. It is hard to wait to see these declines and crashes, but they will come! Your doc might be game to try to placate your worries by giving you an extra round of VL and LFT testing (maybe).

If your VL (on Tues) and your enzymes (by mail) do not reassure you, phone and ask if you could please have an extra VL and enzymes done at 6 (or 8) weeks. All they can do is say no.

But Tig is right, there are others who take longer than other people do, for declnes and SVR - slow pokes, but they are still very cured in the end. C.

Tig · Admin

You have to wait until EOT +12 to know. It isn't unusual at all for people to be detected at the end of treatment, then be undetected and achieve SVR. We have members here that went through that same situation. That's why many doctors avoid performing any viral load testing until EOT +12. With your enzyme crash, you were obviously responding well. Don't overthink this. This sort of thing happens!

RainyJ · Member

Hey Canuck & Jimmy, I don't know how to delete the toothbrush thread. I looked around in settings but couldn't figure it out. They are going to mail me my blood results so I'll update then. I'm gonna work on a signature line at that time also. I had the blood work on 4/28 and I notice I'm not scheduled for another until 6/26 which will put me at the 12 week mark almost cuz I took the first pill on 3/31. I sure hope this viral load went down. I'm hoping I'll hear by Tuesday. Still doesn't explain the high enzymes still after four weeks. Oh well, nothing I can do about it.

JimmyK · Guru

Greetings.

The VL can be detected at week 4. It can then go on to be detected at week 6 and all still on track.

The key is what happens between week 4 and 6.

If there is a 10x (ten fold) increase on week six compared to week 4 then your Doctor may choose to stop treatment.

DO NOT PANIC IF DETECTED AT WEEK FOUR. All that means is you need a week six HCV RNA.

I know of what I speak. My week 4 was 115 and then by weeks six in the 300k range. That constituted a breakthrough yet I went on to a different treatment and I am CURED.

Hang in there and keep us updated. We will help and will be there when you finally are rid of this Dragon. wink

JimmyK

Canuck · Guru

Hey Rainy,

Glad to hear back from you - been wondering how things have been going for you!

DON'T, repeat DON't get disappointed - WAIT until you get the VL back - you may still be surprized.

Nothing you can do but WAIT until the VL is back (the one that should have been drawn in the first place). Some people do not have a crash in their ALT/VL at 4 weeks, most do, so, it makes it hard for the people who do not crash as quickly (crash envy) - you will!

So, you did get the 4 week ALT and AST result back, right? (and what else back) for bloods - what are all the other results ? - you did start with a fairly high ALT as I recall.

Did you have that 4 week blood draw (the one that only gave you only your GT and liver panel, ALT/AST and probably more) exactly on day 28? And, on exactly what day, did you now have the second (repeat) blood draw for the VL (that was not done at week 4)?

Hey, I noticed you have 2 dif posts going on under "On Treatment", this one "Still Detected" and another under "New Toothbrush", it is sometimes easier for us folk to follow your progress and ongoing tretament posts in just one "On Tretament" thread, then it is easier for us to review your prior "On Tretament " posts, all in one thread, in an ongoing fashion, so it is more holistic.

Also, without a "signature line", that too sometimes makes it harder for people to recall your particulars (basic info) without going to your other older threads to be able to offer informed wholistic thoughts. I did leave a sample/suggested "sig. line" for you over in "New Toothbrush", maybe you could revise one like that and create a sig line for yourself? (See instruction on how to do up a sig. line by clicking on the red link below Tig's sig. line).

Sit tight, do not be dissapointed, I know it is hard to wait for this VL result to come back, I just hope the VL result returns quickly. Will you have to attend another appointment, just to get this VL result?? Did they tell you when you will get the result?

You will have good news coming, just not today I am afraid. C.

RainyJ · Member

Got my first bloodwork after four weeks. The nurse made a mistake and ordered a genotype which I already had done instead of the viral load. Doc said well I know the virus is still there otherwise the genotype would not have shown up. Most puzzling is my enzymes didnt go down. I went back and had another blood draw for viral load. Doc wants to make sure load has dropped but she's puzzled by enzymes. Needless to say. Im disappointed.

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