HCV–WHEN DOES SVR ACTUALLY EQUAL “CURED”?


downloadToday “almost” viral-free Randy from the mile-high stoner city of Denver sends us this important “Well, not exactly.” article that we are coming to associate with the VA medical community. Hepatologists from our favorite AO laboratory at the National Institutes of Health (NIH) are beginning to retreat from earlier ebullient claims and throw out decoy flares to distract us from the fact that SVR-even SVR after six months or a year- does not mean “true” SVR. It merely means the HCV is lying dormant again as it usually does-hiding in this or that organ. Or, it is a reinfection. Or….”‘It’s Baaaaaaaack!” and no one knows why but make sure you notify your local Health Department so they can publish your name (again) in the ‘recently diagnosed with STDs’ BOLO newspaper release. 

Randy and I discussed this yesterday afternoon. He’s using the VA pharmacy and they disburse their Sovaldi in 14-pill, two-week increments so you won’t go out and resell it on the black market. Same for the Ribavirin. No, fellow Veterans. We won’t descend into an orgy of laughter and guffaws over this. Their logic is already well into the Twilight Zone. I merely mention this because they (VA) seem to also have trouble counting. Again, hold the Captain Obvious award. I’m not referring to scheduling practices in Phoenix. I’m referring to much smaller numbers emanating from their laboratory sleuthing.

sesame-street1Randy called to announce his recent reduction in perceived bugs per-square-inch of blood. Seems the stoned folks down at the lab need the services of the Sesame Street Count as they are unable to venture past the number of fingers and toes born with. Their initial number two humans and one extra hand (forty five) but after a quicky do-over, they discovered it was actually two guys  and seven fingers (twenty seven). 45-27= 18. 18 is not a rounding error. 18 is not close as in horseshoes, M-26s and Claymores. In science land, 18 is a gaping chasm. Apparently at the VA, it’s no big deal. Au contraire, ma cher. To us hoping for the Holy Grail of SVR, being off by 18 bugs is the difference of getting stung again inside a supposedly screened-in environment after a heapin’ helpin’ of OFF bug repellent.

Randy and I, being HCV rocket scientists with big long strings of impressive-looking capitalized letters after our names, opined that it may be impossible to scare all them critters out in such short order. Have you ever gone grouse hunting and flushed a covey out off the edge of a forest? There’s always that one bird who hesitates and the dogs almost run over him after you’ve flushed them and shot. Only then does he make his presence known.  And much like the reemergence of HCV, it scares the living shit out of you. We theorized that these rogue grouse viral cells can hide out in your organs. Hell, we know they love our livers. They’re like little PACMAN critters running around munching it up. Endemic evidence over time has revealed their presence in our brains and even the thyroid gland. Considering the x rays of my kidneys look like the Shenandoah Caves’ stalactites, I’d say they hang around there on spring break as well.

When the Practitioners of Medicine read the blood results from the lab, they are looking at the number floating in free liquid (your blood). If you’re running around with a Franchi SPAS  12 gauge and a 20-round drum magazine full of Sovaldi buckshot hosing these viruses, it stands to reason a few could hole up in the recesses of the body to avoid the slaughter. They’re smart enough to mutate ever so slightly to disguise themselves from your white blood cells so it is plausible. After 44 years with HBV, then HCV and now AIH, nothing would surprise me. One thing is certain. It’s freaking out the scientists enough that they’re actually thinking about trying to get to the bottom of it. As usual, the immediate panacea is: Take protein pill. Put helmet on; use protection when having sex, do not share toothbrushes/razors/coke straws and avoid intravenous drug use.  Yo, Gendarmes. Round up the usual suspects tout de suite.

I feel like I’m in the right place at the right time for once in my life. Mark went down from one million to 15 BSI (bugs per square inch) after four weeks and then bingo at six. Randy went from 2 million copies to 27, assuming we trust that latest VA estimate for the last four weeks. Next week I find out my initial number as well. I was starting from a lower number of 448,000 BSI. My autoimmune disorder manufactures a lot of white blood cells (WBC) which ‘hunt’ for viruses. Unfortunately, their aim is less than perfect and they incur collateral damage when they miss and hit the liver.  I’m glad I’m using a civilian lab. They rarely call back and say the bugcounter doomoflotchie wasn’t calibrated correctly.

Medical science re HCV is in such flux now that the Grand Poohbahs of the Art cannot even present a unified front on how to attack it. I hear several schools of thought  coming from different sources that queers me to the idea any of them even knows what they are about. One school of thought from the pharmacy who supplies me is “Do they still have you on the Ribavirin?” Remember, this is the beginning of the second month-not three or four later. If the pill salesman is amazed you’re still on it, it implies some of us are not. It also means they’re partially amazed you made it to the phone and answered it coherently before it went onto the answering machine.

HouseNext, I am becoming anemic. Not just a little anemic but a lot. The monogram on Ribavirin says “May cause anemia”. My Sovaldi minder (Mariah) at the doctor’s office called last Friday and said “Hmmmmm. Seems your getting a leettle anemic. I wonder what’s causing that? Let’s try something here. I want you to take one less Ribavirin a day henceforth. That would be four tablets instead of five a day. Can you remember that or should I send you a letter?” Wowser. Where did you park the ambulance, Dr. House?

Add in that they are perfectly aware, or should I couch it in VA terms and say “They are in constructive possession”, of the knowledge I get a phlebotomy of 800 ml (one pint) every month which, the last time I checked, is the speediest way short of slitting your wrists to attain perfect anemia. No one has suggested I refrain so I didn’t. I almost can’t wait to see the horrified looks next week over the realization that my Red Blood Cells (RBC) are going to be in the subbasement. Screw it. I want the BSI in the cellar. We have the technology to increase the RBC. That’s the very least of my worries right now. Besides, it gives me a bodacious buzz when I tie my shoelaces and stand up. It’s like a 30-second LSD trip where everything takes on that paisley look with a pink tint. Relax. It’s an anemia thing. You wouldn’t understand.

Today’s blog is brought to you by the numbers 2 and 7. In VAspeak, that’s all your fingers and toes, your four appendages and your ears and nose. Do not employ the bilateral factor when adding or this won’t work. Do not round up or down, either.

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About asknod

VA claims blogger
This entry was posted in HCV Health, HCV Risks (documented), VA statistics and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

5 Responses to HCV–WHEN DOES SVR ACTUALLY EQUAL “CURED”?

  1. SPrice says:

    hepper74…..
    A doctor would have to be stupid to not notice that the hemoglobin hasn’t gone down on somebody who’s supposed to be taking Ribavirin. Not following instructions can get you labeled “non-compliant” and if you were to ever need further treatment, it would be a good reason to deny it. I mean, if you weren’t just joking and had actually done that and admitted it.

  2. SPrice says:

    I don’t think you’re supposed to do phlebotomy while taking Ribavirin. Because if you get too anemic it can cause a heart attack. Prolonged anemia can also cause ldeft ventricular hypertrophy (enlargement of the heart muscle) because when you have less blood, the heart has to work harder to get blood pumped to your whole body. When you exercise a muscle, it gets large, same with the heart.

    The goal is not to have to decrease the Ribavirin dose. In other words, Procrit can be used to prevent dose reductions.

    Also, your viral load results may actually be lower. They gave you the results in “copies” (which hasn’t been used in years) instead of international units (the standard used by all hepatologists). Copies is no longer used because there is no standard formula for converting copies to international units. Labs vary and so do tests. For example….

    Cobas Amplicor 1 international unit = 2.7 copies
    Superquant 1 international unit = 3.4 copies
    Versant HCV RNA Quant 1 international unit = 5.2 copies

    Imagine what a nightmare if you’re trying to compare results from two different tests. That’s why they stardardised “international units”. that can be used on all the tests and mean the same.

  3. hepper74 says:

    Wait until I break the news to the VA that I did not take any of the Ribiviran and that should really skew their thinking.

  4. asknod says:

    Thanks for that, Lawrence. I’m hoping my AIH goes into remission as well. It looks good. My IgG went down after week 1. I didn’t check the ANA/ASMAs. It will be what it will be.

  5. Lawrence Gwinn says:

    I was in the Gilead test and went from 1.6 million to ZERO in the first week. Now I am in phase two three year after cure, I am still ZERO after year one and liver function and blood test are normal. Next month I will find out if my liver is healing, the object is to get a health liver but it will take time after 43 years of living with HCV, I will keep you posted.

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