Hep C Discussion Forum

Hi Harry,

Your Hepatologist or GI specialist should be providing you with that information. Unfortunately, that doesn’t always happen. Most of them have more patients than they can handle, so the personal care we wish for is lost. It’s up to us to make the extra effort, when there is an issue, or problem. If you need their input, let them know. Write down your questions and submit them, by phone or in person. 

The stigma still exists, but nothing like it was. My opinion anyway. Its better to educate yourself and then others when that snake rears it’s head. You’ll find those people are poorly informed. Often times, some very basic information helps them recognize the truth. I refuse to be a victim of other‘s ignorance. If people refuse to understand the truth, thats on them. As the people with this disease and those that had it, we know the truth. Let there be no shame! It can be difficult to start that dialogue, but when you do, you’ll find it easier each time. 

Iv got 22 days left on epclusa pills not long to go,i dont like the idea of having to wait 12 weeks after tx to get tested ,im a bit concerned that these powerful DAA if not working to cure the virus may have a negative effect on a persons immune system and effect some other part of a persons body hopefully not but these meds have not been around very long ,i dont see why if they are not doing what they are supposed to do your expected to take the 3 bottles and put up with what side effects even if not working ,originally people were tested at 4 week s? Also thought liver nurse and dr would stay in touch and give bit more support ,like prescribe anti depression nausea or relaxant meds or sleepers ,afterall they insisted there would be no side effects ,general practioners wont give you anything most dont even know what the virus is except that it has a certain stigma involved. Im just hopeing its doing the job ,and everybody gets cured good luck everybody.

Hey STL, I'm not saying you are wrong for being "totally on board" with not knowing any of your VL's from pre to SVR12, I spelled out the reasons for my beliefs and leanings and I (personally) would most definitely find not being allowed to know my VL's that long indeed cruel and unusual punishment, it would have driven me mad fer sure, I would have been one of these people who would have gone out and bought my own PCR. Have a fever and not take my temperature, nope, not me. Every VL they did not spend money on, with you, went into a bigger pot that will actually enable other people to get to treatment sooner or period, look at it that way. Obviously the Aus system is and has been working very effectively and efficiently, they have proven themselves over time and time again about being in the forefront and being organized before many other countries were in many areas regarding treatment.  The "don't give anyone false hope" theory is not wrong in itself (as theories go), because there will be ultimately be about a 93 to 100% chance that everyone is going to be happily cured in the end anyway, no matter what your VL's were at, regardless of how many UNDs you might have owned during treatment or before SVR12. Being that almost everyone IS getting cured in the end, and we are all becoming so confident of this, then why is everyone so afraid of any possible "false positive" VLs? I think failures, relapses and "false positive" VL readings are ALL about as rare as hens teeth these days!

Health systems come up with cost saving measures that in fact help get more people successfully treated, by saving some bucks here and applying them over there instead - so, cost saving measures are not bad things. Movement of funds one way or the other can be just a bit hard to take though, depending on which end of the budget you are wanting to use!

If it were me I would still prefer the VL routines spelled out in the (below) "Core Concepts" and the "AASLD" (these are more American mind you) as I would be willing to risk dealing with a false negative - as we can all see that false negatives are very rarely EVER happening nowadays anyway (thank goodness for that and for the new most powerful, wonderful DAA's). And, had I been a relapser, going for my second treatment, then even MORE so would I be expecting, looking for and wanting to know my VL's as we progressed. 

What did you think of those long reads (the "Core Concepts" and the "AASLD" below), and that off-the-wall older study I posted about the 6 and 8 week therapy thinking?

I think VL's remain a most valued tool pre-treatment and during treatment, and not just at SVR12 and on. VL is important to know pre-treatment especially in deciding on certain 8 week/shortened treatment durations for some with VL's under 6 million, it is especially important for relapsers undergoing their second treatment.

Tig's link in Treatment Related Guidelines (by HCV Advocate) defines failure and relapse (as does the "Core Concepts" guidelines)  but gets further into the emotional aspects as well. Both the "Core Concepts" and AASLD" links delve into when the VL is important to know, as in the case you are failing miserably, early, while on treatment - they still have futility rules today - which cannot be acted on if your VL is not known, why subject a body to many more weeks of futile treatment, entrenching resistance, when (if the VL was known) they could have modified treatment or ceased the pts. treatment more promptly. But, like we are all agreeing, relapse and failure is SO rare nowadays, to the point that early VL's (in some cases) are almost being considered useless info, so then, if we are so confident of cure in the end, why be afraid of a 4 week or EOT VL or more to the point a possibly erroneous 4 week or EOT VL?  Overriding all guidelines is a doc's prerogative. 

BTW - you are quite right to bring up that point out loud Tig about the very folk (we have all seen them around here) who started out (pre-treatment) with LFT's within normal limits - for them there was no (or very little) handy witnessing of their LFT crashes to help substantiate that the drugs were at work, but effect could be seen by their VL drops, and of course their greatest telling drop would be that all important SVR12 one. In my book every single VL you get is important, valuable and holds some significance. Some VL's have more purported value than others. 

A 4 week UND and EOT UND is golden. A SVR12 is forever diamond, so is a SVR24 (diamond in platinum/titanium setting)! 

You are right STL (about two ways of thinking, on the same subject) - having HCV is such an emotional disease to have - I could be anxious and wanting test results all along to soothe myself, or be frightened that no test result will be accurate (real) until I am at SVR12 or SVR24, or I might not hardly be frightened at all and simply riding the whole thing out with an aprox. 97.7% certainty that I will probably be cured regardless of anything. Any of the scenarios are possible, should you be a person who would benefit from ongoing VL feedback then in your case feedback is not being offered/available. I think it would be better for people to at least have choice about testing, if it is not offered (to your liking or wishes or expectation then there is no harm whatsoever to ask for what you want or need). If having HCV were as simple as contracting/having some other organism, say, one infecting our bladder or kidney, would we hesitate to know if the anti-biotic we were taking was indicating it was doing the job by looking at all of our possible signs as we went along in the course of treatment, would i choose NOT to look at all the various labs in respect to the drug, as well as culturing my urine, while being treated, before course completion, just in case the treatment was not working, to ensure it was working to plan, but all the while knowing in all likelihood it was going to work? - poor analogy but you get me, no? - fear based "no-testing" makes no sense to me (ostrich head hidden in the sand I don't want to know syndrome), just as fear-based testing (over the top wack-a-mole shot gun approach syndrome) may be a bad idea. Bravery, calm, logic, perhaps even emotional detachment comes in handy either way, when it comes to testing and you own a fear fraught virus. 

Oh my goodness me, lookit what I have done, again! Tromped all over poor woodies thread. Forgive me woody, I do get easily carried away don;t I, but sometime the subjects we get into are just so riveting, and I always seem to bite! I really must hold or bite my tongue now eh? Do let us know what else is up, as far as your labs/GT and such.  Later, C.

woodytwoshoes wrote:

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Hey, done 2 bottles of pills now, 28 pills to go. a bit tired but still working at a very strenuous job, so not bad. Nurse called yesterday to see how i was doing and if i was on any new meds etc. she said i would have to wait 12 more weeks after treatment ends to get blood work done. bit of a wait but not a problem, been living with hep c for years now at any rate. 

Just tho[ught id check in and let you know 

Woody

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 thnx for the feedback woody

I am with lamassu on this I am afraid STL, but just on the basis of the psychological stress-relieving reassurance-value of seeing or starting to see an early 4 week crash of LFT's and VL (and) perhaps seeing these same or even more crashed results and VL results at EOT. I know what you are saying STL, BUT there IS some great significance to a good early lab response to a DAA (ie at 4 weeks), and the significance is not just psychological but phisiological, and, it is cruel (in my book, when blood tests, including some well placed VL's, are "relatively" inexpensive to perform) to keep a pt. waiting in the dark when they can have current ongoing news about what is happening in them and to them as they progress. You have been given a "cruel and unusual" (and economical) punishment of being forbade to know your own VL's, or to see them decrease, I truly hope this practise does not routinely become the norm, or in other words ... "cruel and usual" punishment  for everyone! - this "no VL" testing thing is NOT written in stone, there IS physician discretion and much variation from country to country, province to province, state to state and doctor to dcotor. Let us hope for a happy medium of expense, knowledge, common sense and disclosure. We have had some other Canadians here receiving regular VL testing prior, and during treatment. Many docs here, in Europe and in North America are still operating under various portions of these old 2017 guidelines ... 

Core Concepts - Monitoring During and After HCV Treatment ...

https://www.hepatitisc.uw.edu/go/treatment-infection/monitoring/core-concept/all

 

 

AASLD 2018 guidelines would also have us guessing that in the USA and perhaps in North America, we may not see them following Australias suit in any quick fashion as we have been seeing happen there wth this less VL testing to such degrees

Monitoring Patients Who Are Starting HCV Treatment, Are on ...

https://www.hcvguidelines.org/evaluate/monitoring 

 

Just like any person should be able to know how they are doing, I would encourage woody to ask for EOT LFT's and a VL, (especially if he has not had any 4 week labs) - simply because he should be entitled to know where he is at, what his labs indicate, at the moment. I do not encourage woody to ask because I fear he would be failing epclusa, not at all, on the contrary, as that is a very unlikely scenario, just as medical science reports and just like most of us now realize and take for granted, that we will be easily and well cured with the likes of powerful epclusa. Woody should be able to know his VL has responded, and not just his LFT's (preferably at 4 weeks and again at or just before his EOT). These are just some of my reasons for not agreeing with "no testing" of VL's. People sometimes just have a "need" to know, and for better or worse, the knowledge, if wanted, should be available to a body.

 

 I could spend hours finding studies on the subject of the wisdoms behind VL testing, but i am not that energetic. There are MANY studies out there (many of them old) but all showing WHY "early rapid response" (crashing LFT's and VL's) to drug therapy (for instance) has ALWAYS been important, and always will be - by "old" i mean I am not going to dredge up the old interferon days of "futility" rules - but there are and have been many good reasons why early/rapid response has been studied - here is just one more of those oddball studies - 

www.hivandhepatitis.com - Response-Guided DAA Triple Regimen ...

www.hivandhepatitis.com ? HCV Treatment ? Approved HCV Drugs

 

but you have to read many more of these semi-related studies just to glean one sentence here and one snippet there to piece together why the early or 4 week crashes of LFT's and VL's are important - I will always remain to lean on the side of feedback and knowing, (versus NOT knowing) what my labs are in response to a treatment, period. Avoiding "bad" news, fears of "false" positives - blooey, it is simply information - what your body is showing at this moment in time in response to therapy. Lab feedback is always good in my book. A cost saving (by doing less testing, providing less info to you) saves the system money alright but it is done at our expense (if you know what I mean). I am not going to do the work to find every study that points as to why it is good to know what your VL is doing while on treatment.

They gave you no choice STL, had there been choice (and, it was not that long ago that the standard in Aus WAS to do a 4 week VL and a EOT VL). Now they are cheaping out, as are others, they try to fob it off on "logic" and "say" it is to save you disappointment should you be given a false negative, baloney, they are mostly just cheaping out, and saving some bucks in a horrendously expensive health system, it is the same everywhere (the need to save money) but as well we have come to see that the new DAA's will in all likelihood work well despite all (imo). By withholding the spending and you the privilege of this VL expense, they extend you no info/comfort/hope/feedback and add stress by making you wait in the dark so long with nothing to go on. In my book it is psychologically wrong to do so to patients. Most people WANT to know, something/anything, knowing your LFT's are OK, as long as you understand the importance and significance of their early crashes in response to the therapy, and, just like the importance of knowing about crashing LFT's, in the same way that there is ALSO absolutely no harm in knowing what your early and ongoing VL's are. There IS wisdom to know that it may not only just be your LFT's that have decreased while on therapy, but that indeed we can see a decreasing VL movement before you get to EOT. There may be the "odd" person who might end up in the rare position where it is decided to have their therapy extended, in a continuous fashion, because their full VL response has been known all along.

As long as it remains on the books that certain GT's can do only 8 weeks of a a certain DAA IF their VL is below 6 million, then IT IS NECESSARY for VL's to be done and known pre-treatment, otherwise how would we know who has a VL under 6 million and who is justifiably getting 8 weeks of therapy versus 12 or 16 weeks.

I too am pleased as punch with your treatment woody, impressed you kept up very well with all your hard employment work, I guess you didn't have any further bouts of the runs?, don't be hesitant to ask them to reconsider and to allow you to have LFT's and a VL at EOT instead of waiting and having them only at EOT+12 next, worst they can do is refuse your request. Did you ever get any of your old lab results, did they decide (confirm) which GT you were (for sure)!?  C.

 

Hi woodytwoshoes,

Glad you are doing well. I would insist on a viral load at end of treatment. You may already be undetectable but it is your life and you have a right to know. Relapse after clearing the virus on Epclusa is rare but usually happens in the first 4-6 weeks after you finish treatment. Knowing your viral load at EOT is important in my opinion. If you clear the virus then unlikely relapse at EOT plus 12 weeks you would have evidence you need Vosevi for your insurance carrier.