Author Topic: The Return of the Beast! (Read 70897 times)

slats1056 · « **on:** August 19, 2018, 09:06:00 am »

Hello Ladies and Germs of Heplandia

It seems that the plague has returned! Just got My lab work results back , and after almost three years of SVR the Dragon has awakened once again.

HCV RNA by PCR Quantitive count is 1.02 million , AFP tumor markers elevated, glucose levels and ldl cholesterol as well! Have a referral to a new gastro. since mine has retired , have an abdominal ultrasound scheduled in a couple of weeks. Getting ready for the battery of labs and tests that are coming , as well as the accompanying doubts , fears , and stress that come along with it.

I am so over all of the bullshit that has transpired over the last three years . What should have been a remarkable set of circumstances has turn to shit at every bend in the road. After effects from treatment , separation and pending divorce (and the sordid details that accompany it) , Hurricane and flooded house , repair of said house and having to live in an apartment for six or seven months , work is in the toilet these days but I still can't afford not to work. Thinking about retirement should be an enjoyable time after working full time since a teenager but that ain't gonna happen. HSA account will be decimated once again. AND THAT IS JUST THE BEGINNING!!!!!

But I digress. It has taken Me 61 years to realize that I cannot control any of this shit , so I must accept and proceed to the next step . Excuse My French but Fuck them all and feed them fish heads!!!!!!!! I apologize for the rant . It does make Me feel better to vent rather than vent to My kids and kick the dog , LOL!

Oh well, it looks like I am back for better or worse , for richer or poorer , in sickness and in health--- OH WAIT , THAT WAS A CROCK OF FUCKING SHIT AS WELL! Sorry , no witty anectdotes today Boys and Girls! Hello to all of You around the world. I hope to re-join the conga line in the future. SLATS.

Lynn K · « **Reply #1 on:** August 19, 2018, 09:09:29 pm »

Oh my gosh so sorry to read all tha has been happening to you

I have no words

danton · « **Reply #2 on:** August 20, 2018, 11:58:12 am »

You relapsed after 3 Yrs. SVR ??

I don’t believe there is any documented cases of that happening.
I would imagine any one involved in the research of “Sustainability of SVR” would certainly be very interested in your case.

Mugwump · « **Reply #3 on:** August 20, 2018, 12:50:12 pm »

OMG. What can I say slats! The only thing that might be happening that I can think of is a different HCV rna than the one you were treated for. It may very well be that dual infections can happen and be masked with DAA treatment and you are one unlucky person that had more than one strain of the virus.
I was wondering why my doctor retested after 3 years SVR "just to put a nail in it". My GP is one smart cookie and does keep up with all the latest info on infectious diseases.
I know that this is another hell you are going through, I just found out that my younger brother has confirmed prostate cancer so your situation has brought tears!
Please keep us informed when you have confirmation of what strain of HCV is now eating away at your liver and if it is the same strain you were treated for or a rogue ill defined one. Retro viruses like HCV are horrible and the more we understand how they act over time the better treatments will become.
Easy for me to say all this ...but do try to occupy yourself with things that take your mind away from the horror while waiting for information. For a great many years if I did not have my classical guitar and fly fishing to look forward to I know I would have not made it this far.

slats1056 · « **Reply #4 on:** August 20, 2018, 01:55:14 pm »

Thanx for the replies guys! I am totally confused now. I just went to the Docs office and got a print out of the tests for My records. It reads as follows---HCV RNA, QUANTITIVE REAL TIME PCR 1020000 H NOT DETECTED IU/ml followed by 6.01 H NOT DETECTED Log IU/ml The numbers are in bold print. The Doc was not in the office and the Nurse Practitioner was very vague as to why she told Me I was detected positive. She apologized profusely and suggested I come back and talk with the Doc. I am so pissed and confused at this point that I cannot see straight. I am so disappointed about the retirement of My Gastro because he was so thorough in testing and explaining things to Me. I also need to verify the genotype as I was tested and treated for Type 1b initially. I am livid about the incorrect info. and lack of explanation at this point. I won't get to see My new gastro. until 9-14-18 , so I am trying to calm myself any way possible. Do the above numbers stick out to You guys?

danton · « **Reply #5 on:** August 20, 2018, 02:11:21 pm »

slats

Can you copy the actual report?
It does show 1.2 mill and the log to to represent same
Do Not Det. seems odd.
Possibly where the numbers are is the lab reference range.
If you can somehow copy report I should be able to decipher.

lporterrn · « **Reply #6 on:** August 20, 2018, 02:20:06 pm »

Hi Slats,
If you can scan it in or take a photo and attach, that would be great (blot out your name, med rec #, etc). Also, it would help if you showed a copy of your 12 or 24 week post-treatment viral load.
Cheering for you and we'll help you get through this.

slats1056 · « **Reply #7 on:** August 20, 2018, 04:34:41 pm »

I have not been able to locate My records since the house flooded a year ago. Things are still in disarray with things still in boxes as well as storage. Don't know if they are still packed up or were lost to the water in the house. Trying to get My records from My Gastro who retired last year.

Lynn K · « **Reply #8 on:** August 20, 2018, 04:41:25 pm »

I guess your doctor doesnt have something like MyChart or similar online account access.

I sure like using that as I can see my tests any time. Also to communicate directly with my doctor if not urgent as it takes a couple of days to hear back.

Really would like to see your currents results sounds very odd a viral load number and not detected really odd I sure hope this is a weird false alarm

lporterrn · « **Reply #9 on:** August 20, 2018, 07:11:37 pm »

To anyone following this thread, I asked Slats to email me his results since we couldn't figure out how to upload them. I don't usually take personal emails, but this is a highly unusual situation and I think we all want to know what's going on. He's given me permission to move the discussion to the forum.

Slats is indeed HCV-positive. He is looking for his week 12 EOT results. I looked up his previous post about it and it said, " HCV RNA VIRAL LOAD NON DETECTED Log10 <1.2 IU/ml"
Looking at the way this current lab report was written, if they used a similar format for the EOT, then in fact NON DETECTED referred to the reference range and his results were Log10 <1.2 IU/ml, meaning he had a viral load. This is only speculation on my part, but I suspect he never had an SVR.

Slats, you probably need support and condolences rather than a discussion of good news right now. However, ff there is any good news to be had here, it is that a savvy doc checked you now. And there are really good treatments for you. And if my suspicion proves correct, the other good news is that you don't have a new infection.

If you want the help, we'll hold you up through this.

slats1056 · « **Reply #10 on:** August 20, 2018, 07:38:47 pm »

Thank You Lucinda! I AM TOTALLY NUMB right now! The total disbelief is extremely unnerving! I am having trouble processing all of this right now. The one bright spot is that the Forum is so supportive and informative. Here is hoping for the best. Wish I had the ability to come up with a witty response right now , but I just don't have it in Me.

lporterrn · « **Reply #11 on:** August 20, 2018, 08:15:26 pm »

I've looked at your EOT + 12 week labs. They are quite confusing, but it does appear you were cured. In short, my theory was wrong. I've never seen anything like this. Is there any chance that this could be a new infection? Your enzymes would likely be quite high about 6-12 weeks after the infection.
I assume your doc will run a genotype test to see if this is a different type. By any chance, were you genotype 3?
Do you have questions that you want to run by us? If so, ask. Even if it sounds like a silly question.

The witty response will come. Even if you had one, I don't think any of us could muster a good laugh - it's all quite a shock.

Stay close. I'm sorry you are going through this but thank you for allowing us to learn from this.

danton · « **Reply #12 on:** August 20, 2018, 08:31:43 pm »

slats,

First and foremost I am sorry this was the result you received 3 yrs post treatment.I can only imagine how you are feeling.

The good news is as Lucinda mentions, Vosevi and Mavyret are now on the market and both ,especially Vosevi is tailer made for just this situation.
In trials it had better than 97% success and many in those trials had failed Harvoni.

I think I would possibly tend to have a different opinion about the interpretation of your past results and whether or not you SVR'd,given a few things I see in your signature line,however I don't feel right now may be the time with what you are dealing with.

I will say though I hope the new gastro is going to run a new Genotyping and resistance testing before initiating any new treatment.

Sending good thoughts your way.

danton · « **Reply #13 on:** August 20, 2018, 08:32:35 pm »

Posts crossed Lucinda

My thoughts exactly

slats1056 · « **Reply #14 on:** August 20, 2018, 08:45:04 pm »

I we are talking about ns5a/ns5b ravs? Is dual infection even possible? I cannot think of any way of re-infection with the exception of the flooding from Hurricane Harvey a year ago! Wouldn't the genotype testinf initially done show a co-infection? is there a specific test for the different genotypes? Has anyone seen My brain? I seem to have misplaced it. If You have , please alert the authorities! LMFAO

slats1056 · « **Reply #15 on:** August 20, 2018, 08:50:48 pm »

BTW, danton, I didn't intend to by pass Your original post. I initially found this website through Lucindas' blog when I first began treatment. My apologies as it was not intentional. Had a brain fart and went to familiar territory as it were. Nice To meet You!

danton · « **Reply #16 on:** August 20, 2018, 09:08:32 pm »

slats,

Absolutely no apologies needed. Posts cross and I have also read many of Lucinda's writings and also have very high reagard.

I agree that this is very confusing and even moreso for someone who has not seen the actual PCR report.

The viral load of 1020000 certainly means there is viremia,however Not Detected means just that,so those two results beside each other certainly causes confusion.

If this was me,before anything else I would have my PCR repeated for clarification and at the same time ask for a genotyping done then go from there.

slats1056 · « **Reply #17 on:** August 20, 2018, 09:15:24 pm »

All of My initial testing for genotype showed 1b. I have been clean for at least 25 Years( been so long I can't remember) Although I drank like a fish for years until I got the Hep C diagnosis after a routine check up and blood work. And I ain't no angel or a liar , I did have the celebratory drink or three after the fact. Can't think of how I might have gotten re-infected during the flood! Any ideas?

?? If You have read My initial post You can probably guess the answer to the sex question. ROTFL!!!

Haven't been riding for years , so no fights or wrecks to have been cross contaminated by anyone. No transfusion ever , no air guns since child hood , no new Tattoos ( although I have been tempted but broke). I am totally stumped by this outcome. THIS IS NOT SOMETHING THAT I WANT TO BE KNOWN AS BEING THE FIRST AT

$:-\$

LMFAO , My head is hurting so I am taking a break guys. Toodles, Tommy

lporterrn · « **Reply #18 on:** August 20, 2018, 10:13:54 pm »

It's not uncommon for us to have multiple genotypes. Usually the most dominant one expresses itself, thus we appear to have only one type. Occasionally people will switch types as one becomes more dominant. This happened to me, but in my case it was just 1a to 1b. Occasionally, a genotype test will show more than one.

That said, the reason I asked if you could be GT3 is because there have been some cases of GT3's becoming viremic between weeks 12 and 24 post-treatment.

Danton is right - get retested because this could be a mistake. And they should check GT.

Clearly, you don't have any obvious risk factors, so reinfection doesn't seem plausible. Unrelated to the flood. The alcohol use would not do this - hope you enjoyed it. Nothing to worry about there. Hope we can raise a toast to you again when this is behind you.

slats1056 · « **Reply #19 on:** August 20, 2018, 10:27:33 pm »

Allready have a list a mile long in anticipation of Doc visit. i.e. re-testing , genotype, quantitative , rav testing , an so on. I was not aware of dual genotype infection or dominant genotype take over, interesting to say the least. Well I thought I enkoyed the drinks but paid the price the next day. Felt like crap big time. Never been first at anything that I can remember , but this sucks big time.

Mugwump · « **Reply #20 on:** August 21, 2018, 02:13:19 pm »

I know I might be blowing smoke out my arse with this post. BUT a newly networked software spreadsheet may very well generate a spurious report error. If it is done through a poorly executed excel spread sheet networking extension that automatically forwards to doctors offices.
AND STILL report as NOT DETECTED thus confusing the hell out of even a doctor.
It may very well be something as minor as a change in a spread sheet equation input field that is causing obfuscation of results going on here. Otherwise it would be completely asinine to use the words NOT DETECTED in such an important document!
My reports never combined the words NOT, and DETECTED until it actually happened in 2015. So I have never been unsure of a viral detection report result when I received one.

Otherwise I am sure I would have had kittens upon seeing them and thrown a chair through a window. When I was shown the lab results on screen the first time I failed treatment in 2003-4 the word used was detected with an actual viral load.
Clerical error and software error, in what are essentially networked spread sheets are certainly not unknown problems. Especially in modern medical imaging information management, which is my wifes specialty. Anyone who works setting up networked spread sheets can easily make an error that can do strange things to the screen printouts of information streams.
By any chance did the doctor you are seeing just re-establish or newly establish online records communications? Is it a new Doctor's office you are seeing? If this is the case be patient with them, I am sure they have your best interests in mind.

All my best thoughts and wishes that this is what actually happened here.
Eric

Steve76 · « **Reply #21 on:** August 21, 2018, 06:05:09 pm »

I haven't posted on this forum for quite a long time. I was cured in 2016.

I think this is a mistake. You did not mention your alt or ast levels, I would imagine they would be elevated if you were reinfected.

Personally I would not wait, you can get the alt and ast levels checked anywhere really cheaply. If your Alt and Ast levels were elevated then I would believe the report. Since the report did say Not Detected I believe that is what you are! So you had your AFP test done why not the Hepatic panel which would include the Alt/Ast. I am confused...Good luck

Lynn K · « **Reply #22 on:** August 21, 2018, 06:19:01 pm »

Yes that is a good idea when I relapsed after 12 weeks of Sovaldi/Olysio the first result I got back was my liver enzyme test which showed one of my liver enzymes has risen above normal and soon after they were both again above normal range. Elevated liver enzymes would still not guarantee a relapse but would be an indication you may have.

Again so sorry to read you are in this situation. I am hoping for better news once you see your doctor.

lporterrn · « **Reply #23 on:** August 21, 2018, 07:01:55 pm »

Hi Slats - one more question - has your doc ever tested you for cryoglobulinemia? I don't suspect this, nor do I think it is at play here, but I am curious because of some things I saw in some of your posts.

slats1056 · « **Reply #24 on:** August 21, 2018, 07:30:23 pm »

Not that I recall, ( cryo do what LOL ) I will check as I found parts of My records last night. AST 22 ALT 30 , Three more pages of results that have not posted. Lucinda if You would like I can repeat process & send to You. Has anyone heard of a relapse after this long of a period?

? I usually update My signature when labs come in, just been totally blown away and My mind is still going 90 miles an hour. TMI syndrome. Mugsy , I will check with Doc and Lab about procedure. Sorry to here about Your brother as well. I'm going to get a re-test i.e. hepatic panel , genotype , etc. as soon as I can. The problem is juggling work, the house & repairs , family problems , so I can afford everything! Trust Me I an working on it, just way to much on My plate at the moment. Everything off of the platter is being crammed onto a saucer.

lporterrn · « **Reply #25 on:** August 21, 2018, 07:44:58 pm »

I am still trying to find a way to get this info visible to everyone, but at this point, let's hold off with more labs. I think seeing your doc is your next step. Actually, an even better next step is to take a break from this for a bit. This feels bad, but medically speaking, it isn't urgent. Recapturing your sanity and inner peace are priority. We are here for the long haul and if you can find a way to step back for a bit, you will be too. One thing I tell myself is, "Step away from the computer." It helps.

Albeit rare, all the return of hep C stories I've heard have had logical explanations, including false lab reports.

danton · « **Reply #26 on:** August 21, 2018, 08:04:27 pm »

Lucinda says:

" Actually, an even better next step is to take a break from this for a bit"

I would certainly second that,given what you have on your plate slats.

Just like to leave you with this until you get all your tests done.

If this is a false lab report you are golden and if in the event you have indeed relapsed then know that Vosevi for 12 weeks in the Polaris trial cured 75 of 75 patients who relapsed with GT 1b

Hope that helps relax you a bit.

Good luck

slats1056 · « **Reply #27 on:** August 21, 2018, 08:42:36 pm »

Good call Guys. That is what I love most about this place, the voice of reason is always right up there calming the frenzied mind from eating itself alive

What You never think about , someone is always there to ground You. Letting things cool off as well as calming the storm. Strangely I feel better with those words of sanity in this crazy ass journey. Here is hoping for mistakes for once

. One last tidbit of info, My kids think they might be able to help with getting the info. uploaded and posted to the Forum. We will see , but after a calming period to keep My brain from going off the rails of this crazy train to quote Ozzy Osbourne.

You guys just cannot fathom the feelings that I am experiencing knowing all of You are out there with kind words , support , caring , and all of the help that You provide. All of You deserve a virtual pat on the back from Me, so here it is

Lets' lighten the mood a bit , any body out there that have joined the world wide conga line . All hail HEPLANDIA

lporterrn · « **Reply #28 on:** August 22, 2018, 12:07:48 pm »

Here are Slats results, and when you see them, I think it will be easier to discuss:
Recent results:

12 week post-EOT

EOT

As you can see, the recent results are clear because they put the results in one column and the reference range in the other column.

The EOT lab reports are oddly written but I assume that the results are reported and they don't state reference ranges in the column form but put an explanation below (since technically there aren't ranges but goals).

Does anyone see this differently?

Another explanation did occur to me that maybe the 2 EOT labs were wrong, but probability makes it more likely that the recent lab was wrong rather than 2 prior labs.

dragonslayer · « **Reply #29 on:** August 22, 2018, 12:25:51 pm »

I agree, Lucinda. Leaving the ref range column blank is confusing, but assuming the 'non det' is not meant for the ref range column in both the EOT and EOT+12 results, then the latter result looks like SVR to me too.

Clearly, an anomaly like this shatters the security many of us feel once reaching what has been known as SVR. Im SVR + 3.5 yrs, so Ill be following this thread Closely. Have to find out what this is all about. So sorry for Slats. Being such a rarity, all I can do is throw my hands up with a 'WTF'.

danton · « **Reply #30 on:** August 22, 2018, 12:29:32 pm »

HI Lucinda,

I was under the impression that we were possibly taking a break from this for a bit until slats had the opportunity to settle and get his retests done.

Does slats want to pick up the conversation on this now?

My notification goes off on this thread as I am very interested in this situation as I imagine many others are also.

I have definite thoughts on what I am seeing ,however still want to know slats is ok with discussing before I comment.

Thx

lporterrn · « **Reply #31 on:** August 22, 2018, 12:53:47 pm »

Danton - I am so appreciative of your thoughtfulness. I told him I'd post these. and I think if you have insight on this, it is welcome.

danton · « **Reply #32 on:** August 22, 2018, 01:06:35 pm »

Ok,just didn't want to be discussing someones lab reports without him possibly knowing we were,however if he agreed you post them for perusal then thats great.

Just a question Lucinda, I see the first report is a Quest Diagnostic Lab form,however I dont see a date. Have you blocked that out with copying an if so do you have the date on there?

Steve76 · « **Reply #33 on:** August 22, 2018, 01:57:32 pm »

This is very odd, I think going back to my previous post that slats needs to test his liver enzymes again. The test is cheap and will give him some relief if his enzymes fall within the normal range.

I realize that you can be infected and have enzymes within the normal range(out of normal range enzymes is still a huge red flag), but I think this would be a good start. This is how I found out I had Hep c, and probably many here as well.

Slats mentions AST 22 ALT 30 but no date. These numbers are in the normal range, but I think the ALT range is being revised to a lower upper limit and I think it is somewhere in the 30 range for men and women it is at 30. Possibly someone can enlighten?

As danton said there is no date on the first lab results. Just a heads up I think Quest Diagnostics is pretty horrible, just my opinion though.

Slats this will work out, I still think there is a mistake here. So you were checked at 3 months EOT, did you get checked after that? A physical with blood work? Again the liver enzymes can be telling.

This makes me want to retest my viral load again

Lynn K · « **Reply #34 on:** August 22, 2018, 02:26:51 pm »

My lab (labcorp) has normal ranges as follows

AST 0 to 40 IU/L
ALT 0 to 32 IU/L

Different labs have different reference ranges. Might depend on the units being used.

I had above normal ALT a month ago but was recovering from a broken ulna bone near the wrist and had been taking Aleve for pain. It is back to normal now on recheck. Any way elevated liver enzymes can be caused by other things.

I had a physical at work and had donated blood at about the same time. My work physical said I had elevated liver enzymes. The blood bank said I had hep c antibodies and thanks for donating but don’t come back. I got those letters one day apart. That was how I found out I had hep C.

I am hoping the recent lab is in error somehow but it sure looks like a positive test. I am more wondering about his EOT and 12 week post and that HCV LOG <1.2
I am wondering if he was actually clear or maybe weakly detected on the HCV LOG?

Mugwump · « **Reply #35 on:** August 22, 2018, 02:39:57 pm »

I just hope that this result was lab error caused by a sloppy lab technician. This problem has also been known to happen. Contamination of equipment is usually the problem and this is precisely why at first here in Canada the test was repeated to rule out any possible lab errors.

However it is still silly and irresponsible for their automated reports to include words NOT DETECTED in the same line as a result like a 1 million twenty thousand copies of virus. Reports I have seen only use NOT DETECTED in the method description above or below the result! It was an insensitive CLOD or a medically challenged software coder that coded that little bit of sql data base to networking extension!

slats1056 · « **Reply #36 on:** August 22, 2018, 04:05:33 pm »

Hey Guys , Go for it . If I get stressed I do like Lucinda said and back away from the computer and shut it off.
Regarding EOT & EOT+12 Labs , I will have to check the paperwork , but My signature should coincide with them by about a week. The ALT/AST numbers and current labs from Quest were drawn on 8-8-18 and went to the Doc on 8-17-18!

I WILL GLADLY ANSWER ANY QUESTIONS THAT I CAN ON THIS SUBLECT! LUCINDA HAS MY PERMISSION AND AUTHORITY TO POST AND YOU GUYS CAN DISCUSS FREELY THE INFO. PROVIDED. JUST KNOW THAT I WILL BAIL OFF OF THE COMPUTER WHEN EVER I GET OVERWHELMED AND RETURN WHEN THE BRAIN CALMS DOWN

PLEASE BE PATIENT AND KNOW THAT I HAVE ALOT ON MY PLATE AT THE MOMENT.

Here hoping for errors and mistakes!!! I am working an getting another full blood work up as soon as I can.

slats1056 · « **Reply #37 on:** August 22, 2018, 04:28:05 pm »

Docs office just called & He concurs 1.02 iu/ml & 6.01 log is a definite positive result for HCV virus. Waiting to find out if He or the new Gastro will do the complete Hepatic panel with Genotype & the works.

lporterrn · « **Reply #38 on:** August 22, 2018, 04:38:39 pm »

Thanks for the update Slats. Holding good thoughts for you.

slats1056 · « **Reply #39 on:** August 22, 2018, 04:45:58 pm »

No offense intended Lucinda , But You are a bright ray of sunshine in the shit storm that is life at the moment. I don't know what it is , but whenever I see a post by You or Gnatty ( even though You are both on the west coast and I am on the gulf coast ) I feel a smile come across My Face knowing that I will get an upbeat message from You guys. Not that all of the rest of You don't brighten My day as well

Thanx a bunch guys!

dragonslayer · « **Reply #40 on:** August 22, 2018, 05:22:27 pm »

Slats, this is such a cruel blow to you. Im sure you had written this whole episode off and gotten on with things; this must have been the last thing on your mind.. I mean, SVR is SVR, right?

Here's a study result with a not tiny cohort.. results were a late relapse rate subsequent to achieving SVR with a DAA of about 1%.. so it does happen but is extremely rare, although long term results on a more general scale are not known yet with DAAs.

https://www.ncbi.nlm.nih.gov/pubmed/29993164

slats1056 · « **Reply #41 on:** August 22, 2018, 07:09:59 pm »

The Doc himself called Me as I was getting off work. Apparently He wanted to clear up things for Me. He said and I quote " The referral to the new Gastro. was not just to have a new Doc. but for HCV SCREENING FOR THE PURPOSE OF RE-TREATMENT OF THE VIRUS AND TO SET UP TESTING AND A PROTOCOL TO DECIDE WHAT COURSE TO TAKE GOING FORWARD" . The new gastro. will completely re-do bloodwork and testing to decide what is what. I.E Colonoscopy , Liver Biopsy , Gentype , MRI , ETC. ETC. So after the ultra sound all records will be forwarded to him , as well as trying to get all of My records from My first Gastro. who has retired.

danton · « **Reply #42 on:** August 22, 2018, 08:31:12 pm »

Hi slats,

I was hoping for you that this was a lab mix up somehow,that even possibly Quest had sent out one of your old PCR reports by mistake. Thats why I inquired about what date was on it.
Real long shot, but failing that I felt that you probablyhad viral load as those numbers were staring us in the face.

A blow for sure slats, however as I mentioned to you in a previous post that with the new drug out now (Vosevi) if this is a true relapse it is tailered made for it.
Not one GT1b in their trials on that drug failed to SVR and it is having excellent results out here on the market in relapse cases.

The new doctor should obviously run a Genotyping ,just to rule in or out that this could be a new infection. I read above you mentioned no risk factors for that,however as we all know, many folks have been diagnosed with this sneaky virus and had no risk factors and had no clue how they mayyhave been infected.

Finding this out may make a difference in what treatment you would do,however with either your chances of success are beyond excellent.

.I have a few questions for you about what testing you recieved after SVR 12.

If you are up to that great and if not maybe at a later time.

Sorry you have to face this again slats ,however I have no doubt you will get rid of this once and for all!

lporterrn · « **Reply #43 on:** August 22, 2018, 10:02:50 pm »

When the doc personally calls, I know you are in good hands. Now you can do some serious relaxing!!! We can relax through shit storms, or freak through them. A good support system and a doc who calls you is an invitation to relax.

slats1056 · « **Reply #44 on:** August 22, 2018, 11:20:54 pm »

I ,located some of My records from EOT+12 through early 2017. Most are regular CBC blood work , some with AST/ALT numbers , from Internist and Gastro. ! No Viral loads or liver panels though. Brain dead at this time , so time to shut her down boys and girls. Thanx again Lucinda. Feel a strange calm although My mind is still a whirlwind of thoughts and questions. Good nite all!

Mugwump · « **Reply #45 on:** August 23, 2018, 02:29:29 am »

Hey slats after you have a good sleep. I predict that next week you will be puttin' redfish and shrimp with fresh peppers on a slow grill with a good San Antonio Texas BBQ chili sauce and chilling out. HANG IN THERE. The storms will pass. Just wish I could go wet a line and get a few for you!

Philadelphia · « **Reply #46 on:** August 23, 2018, 09:37:13 am »

Slats my friend, my buddy, my treatment partner. I don’t know what to say, other than I am holding you in my thoughts and hoping that this is a nightmare that is quickly resolved for you.

I always appreciated your humour, your steadfast positivity and your presence here. Anything I can do to help, just let me know. Seriously.
Big hugs.

Steve76 · « **Reply #47 on:** August 23, 2018, 05:32:09 pm »

Slats,

This must be hard I understand, regardless you will make it through.

To beat a dead horse again your Ast/Alt are in the normal range. You said in your last post about old labs "Most are regular CBC blood work , some with AST/ALT numbers".

The Ast and Alt are part of the liver panel generally. Those numbers are how most people first get tested for Hepc when they are found to be above normal which yours are not.

The Not Detected in the Reference range slot is strange as well.

Personally I would seek out another medical group. 2nd opinions are a valuable tool for consumers. I would not trust the lab report showing the virus(2 big red flags). All of the testing they want to do sounds expensive(unless you have grade A insurance).

Get another Viral load test from a different provider and get your liver panels done which would include the ALT/AST. You can get this done quickly especially the Ast/Alt.

I am opinionated and I am trying to help. Too much testing when a little bit would clear everything up. If you indeed have the virus again then yes the extra testing would be required(genotype,and blood work,fibroscan).

Peace

slats1056 · « **Reply #48 on:** August 23, 2018, 07:50:03 pm »

Hey Mugwump , I was just thinking last week about a big saddle blanket Flounder deboned and stuffed with a mixture of cheese crackers,shrimp,crab,onions,celery,and bell peppers then topped with butter , smoked with some pecan tree trimmings from My back yard . Squeeze a lime over it when done , roll up Your sleeves and dive in My brother from another Mother

Drop some of the boiled shrimp in a jar and fill it with the BBQ sauce and chill over nite for a Texas style cocktail (Jalapenos optional)

Philly Girl , How are things down under My friend? I appreciate the thoughts and well wishes big time. Hope this post finds You in good health and spirits. Not back to My witty usual self at the moment , but it should come. Been watching Your blog , too! I don't remember if I ever thanked You a while back for the nod to the Heplandia name!

. I usually strive to be at least right up there with things that I do , but this is not what I want to be remembered as #1 for LOL! Steve , Hard?

Not really! Angry, Disconcerting, Unnerving ,Baffling ,Disappointing! Big time.

More bloodwork to confirm the matter is in the pipeline. If affirmative the battery will follow. Will look at the test results again when I get then sorted out and do some more looking, lots of stuff still in boxes and storage from the flood. Strange but most tests are Biopsy , Hepatic panel , Ultrasound , and MRI s. Fibroscans don't seem to have caught on down here , but I will inquire! PEACE ALL OVER YOU GUYS AND HUGS TO ALL, AS WELL AS GOOD EATS! ROTFL

There it is , it is coming back to Me!

slats1056 · « **Reply #49 on:** August 23, 2018, 10:30:47 pm »

O.K. Guys and Gals!!!! This is the question that I need help with--------------------------DOES ANYONE KNOW OF ANOTHER CASE WHERE SOMEONE WAS UNDETECTED AT EOT, AND EOT + 12 ACHIEVED SVR12 AND FOR ALL INTENTS AND PURPOSES WAS CLEAR FOR ALMOST 3 YEARS AND RELAPSED AFTER TREATING WITH HARVONI FOR 12 WEEKS WITH GENOTYPE 1B?

?? This is the one thing that I cannot fathom. I knew going in that it wasn't going to be 100% proof positive , but this has taken a piece of My sanity as well as a piece of Me and was pretty costly as well even with good insurance and help from Gilead. This not a poor , poor pitiful Me post and I know You can't put a price on life! As for the sanity part , I have been told many times that I am a crazy S.O.B! This is just seeking info. for My peace of mind and a little closure I guess You could say. THE MIND IS GRINDING AGAIN AS DOUBTS AND INSECURITIES CREEP FROM THE NOOKS AND CRANNIES OF MY LITTLE OL' PEA BRAIN! Time to bail and re-group guys! See You in the funny papers or here on the Forums! Health and well being to all of You around the world of Heplandia

Lynn K · « **Reply #50 on:** August 23, 2018, 10:39:04 pm »

Pretty much this is why it is so concerning other than being worried about you is you are the first at least I have heard of. I think we had a couple of false alarms but haven’t heard of any confirmed.

slats1056 · « **Reply #51 on:** August 24, 2018, 08:40:48 am »

Thanx Lynn , I was doing some looking around last nite , but the brain was not co-operating. LOL. I am currently researching My new gastro. Doc referral as well as relapse stats and re-treatment options when I have the time. I appreciate the quick response. Very disturbing and worrisome indeed. NOT TO ALARM ANYONE OR CAUSE A PANIC THIS EARLY IN THE GAME , BUT REGULAR RE-TESTING SEEMS TO BE IN ORDER ( REGARDLESS OF YOUR SVR STATUS ) I am wondering how all of this will get into the records and what Gilead would say? Assuming this all goes the way I think it is , being the rarity will not bother them in the least.

$:-\$

danton · « **Reply #52 on:** August 24, 2018, 09:31:15 am »

slats

The reason I asked you the other day what tests you had done after your EOT+12 was to see if there was a time frame on a possible relapse.

You said you had some CBC’s after but no viral loads done, and that would make it impossible to know with any certainty when you relapsed(if indeed you have).
The AASLD is still recommending a EOT +24 be done to confirm SVR.

Reason being, there is research ongoing on the length of time for SVR beyond any doubt.
As dragonslayer was good enough to copy one of those studies above it shows that there is indeed cases of true relapse after even 24 weeks ( one patient even as long as 32 Months after in that particular study

As dragonslayer also mentions because these drugs are relatively new the time frame is just not yet a certainty.

With the data so far though it is rare, looks like approx. 1% or less.

Many doctors knowledgeable about treating today will do EOT +12 but also 24 and many are doing 48, and even beyond yearly

If you have had a relapse it could have happened at week 13 post or anytime thereafter, be impossible to know because of no PCR done after post 12.

In most cases Alt/Ast will rise in the meantime as Steve has mentioned which is always a red flag. I agree with Steve that it is odd that yours did not rise.

Your VL test coming up will tell the tale if you have virus slats and you take it from.
I have already mentioned there are excellent treatments for relapse and you should do very well .

I still have hope for you that this is just a lab cluster fuck error , however just my personal opinion is it could be late relapse(beyond EOT +12)

Hang in

slats1056 · « **Reply #53 on:** August 24, 2018, 11:46:36 am »

I must have missed the question about testing copies between EOT+12 and present in the confusion! I thought that I had made it clear that after the flood , I have lost/packed/not yet unpacked a lot of things . The labs that I have located so for were posted by Lucinda. The remainder I am compiling and trying to locate. I am also trying to get My records from My Gastro who treated Me as He has retired. I would assume they would be in there. The attachment that Dragon Slayer posted I believe pertained to Daclatasvir/Asunaprevir. While informative and are DAA's were not about Harvoni! At the time I was treated if I recall correctly , protocol was EOT and EOT+12 = SVR12 being the gold standard. But that was 3 1/2 years ago. I of all people am keenly aware of the need for an accurate time line and am making every attempt at doing so. WHY DON'T WE JUST LEAVE IT AT RELAPSED AFTER EOT+12/SVR12 UNTIL I CAN PROVIDE CONCRETE EVIDENCE IN THE FORM OF HARD COPY LAB REPORTS! None the less I am still seeking any available info. on relapses for Genotype 1b for those who were treated with Harvoni ( Ledipisvir/Sofosbuvir DAA's) for further research into what RAV testing and treatment options are open. I am not quite sure Why I had such a rough time during treatment compared to others (possibly a harbinger of what was to come? ) , but this time around I am trying to do My due diligence , more extensive research , ask more questions , and be as informed as I can! That is what I love about the Forums. Extensive library of information from people that are much smarter than I am , Ask the obvious stupid questions and yet still get an answer , unending support , great people , many new friends around the world , and BY GOD JUST A FEELING OF BELONGING AND SELF WORTH! Oops, getting long winded and ranting again (but damn it feels good to get it of My chest )

Later 'gators. Time to chill out.

lporterrn · « **Reply #54 on:** August 24, 2018, 12:41:22 pm »

Although you aren't the first person I've known to have a relapse after an SVR12, you are the first I've known without a reasonable explanation. Examples of this are:
People with genotype 3
People who are coinfected with HIV
People with cryoglobulinemia
People who were tested with an insensitive viral load assay
People who were tested short of week 12 and didn't get further testing
False-postives

Danton is correct - usually liver enzymes are an indicator, but so far, what we have seen looks normal, so this would not have helped.

Danton pointed out the AASLD/IDS follow-up recommendations. The week 24 post-EOT recommendation is vague. The week 12 post EOT is clear:

Quote

Quantitative HCV viral load testing is recommended after 4 weeks of therapy and 12 weeks after completion of therapy.

But at 24 weeks, the wording makes it look optional:

Quote

Quantitative HCV viral load testing can be considered at the end of treatment and 24 weeks or longer following the completion of therapy.

Despite the apparent optional of it, I am leaning towards retesting at the very least at week 24, perhaps one-year.

Lynn K · « **Reply #55 on:** August 24, 2018, 01:49:34 pm »

For myself after my fifth treatment of 24 weeks of Harvoni and ribavirin I asked to have testing at 6 months and one year but that was because of my treatment history of being a three time null responder to interferon based treatment and having relapsed after treating with 12 weeks of Sovaldi and Olysio plus having cirrhosis.

So with all that behind me it seemed reasonable to do additional testing. Kinda thinking about asking to do a viral load next spring with all this going on.

But with you being treatment naive without cirrhosis and 1b being more responsive than my 1a one would expect SVR12 would be a reasonable stopping point for viral load testing.

I am so hoping this is some egregious lab error.

danton · « **Reply #56 on:** August 24, 2018, 07:07:48 pm »

I agree that the AASLD is somewhat vague on the 24 week testing ,which I have known them to be on a number of topics important to clinicians and patients.

These leading Hepatologists who are on the front line treating and teaching others are not so vague though.
This is an article put out just 8 weeks ago at CCO by :

Stefan ZuezemProgram Director
Jordan J. Feld, MD, MPH
Hemant Shah, MD, MScCH HPTE

PostTreatment Management
Successful Therapy
SVR is determined with measurement of HCV RNA using a highly sensitive assay 24 weeks following the end of treatment. SVR12 has been adopted by drug approval bodies as a surrogate for SVR24. Earlier response at 4 weeks after treatment is often reported by trial investigators as it is predictive of later response. These markers are undergoing validation in clinical trials. For patients treated with PI-containing regimens, SVR has been specifically defined as HCV RNA < 25 IU/mL at Week 24 posttreatment.

Lucinda says,"Despite the apparent optional of it, I am leaning towards retesting at the very least at week 24, perhaps one-year."

Personally I believe this should be recommended to all until the current research is more complete and published.

dragonslayer · « **Reply #57 on:** August 24, 2018, 08:02:05 pm »

Here's a study I found done in October '16 with Harvoni investigating long term relapse.. The link for the study abstract itself, performed by Oxford, is contained at the bottom of the linked article..

In a nutshell:
Out of 3004 participants who were SVR12, only 5 experienced relapse at 24wks post treatment, ie, a percentage of about .16%

https://www.hepmag.com/article/late-viral-relapse-hepatitis-c-treatment-rare

Unfortunately, Harvoni, which only became approved at the end of 2014 hadnt been around long enough to get longer term results. Hopefully, study results will be available which test for longer periods post treatment.

slats1056 · « **Reply #58 on:** August 24, 2018, 08:06:05 pm »

Hey Lucinda , Danton , & All other interested Folks, I have located six more Lab reports from 1-13-16 to 5-15-17 that total thirteen pages. Don't see any Viral loads quantitative or otherwise . I have also for Liver Biopsy from before treatment , results of a HIDA scan post treatment , and a lab report from My Urologist as well. The kids are setting up a printer/scanner tonite and we are going to try to upload them if possible this weekend. Please let Me know if I should leave any of the aforementioned tests out like the Biopsy , HIDA scan, and the urologist report. Still digging guys , bear with Me.

slats1056 · « **Reply #59 on:** August 24, 2018, 08:10:46 pm »

Thanx Paul, I am going to take a break and have some dinner with the kids, Plan on reading that link after I eat. I APPRECIATE the help!

lporterrn · « **Reply #60 on:** August 24, 2018, 08:57:10 pm »

Paul - that's a good study.
Danton - I sure respect those experts, so thank you.
Slats - As curious as I am, I recommend you take a break from scanning and uploading and let's see what your doc has to say about all this. New info may be more useful than anything at this point. We can always revisit the older labs later. Personally, I think this is a good time to boost your immune system with low stress activities, esp. since you already have a lot going on. How does that sound?

Type0Negative · « **Reply #61 on:** August 24, 2018, 11:22:04 pm »

The scanning, the posting, the discussing are all in attempt to cope with this change. You doing good. I like your humorous approach. It is hard to just wait, humans have ability to solve problems and you want to do something to solve it, but you can't speed up the process.

I been reading about HCV for over 25 years and my impression was that you NEVER can be absolutely sure in Cure. This is like addiction- they say- it is life long condition. You can not be cured of alcoholism or substance misuse. It can return. So as HCV. One of the articles I have read in the past said that HCV in some cases able to cross blood/brain barrier and affect the brain, and medications can't cross the barrier, so the virus can return from there. I just recently got my EOT +12 results as not detected and I can't think of myself as being cured. I still view myself as someone with HCV. I am Gen 3 and I have a feeling it will return or already returning/returned. Does it gets better with time? I just don't see myself ever believing in cure. I actually believe in being cured from addiction. I think my chances of using opioids in the future are less than develop HCV again. Sorry for pessimism, but HCV is not that bad. We lived with it for so long- it does not make that much difference. I see very little advantage. If it returns, I will accept it. I had pretty hard time on treatment and not sure I would want to put myself through it again.

danton · « **Reply #62 on:** August 25, 2018, 05:48:56 am »

T Negative

Thanks for the input.

Mugwump · « **Reply #63 on:** August 25, 2018, 09:00:49 am »

Quote

Extensive library of information from people that are much smarter than I am , Ask the obvious stupid questions and yet still get an answer , unending support , great people , many new friends around the world , and BY GOD JUST A FEELING OF BELONGING AND SELF WORTH!

This is not meant to criticize or critique your intelligence slats, indeed you are my brother form another mother. WE all become unsure of our intelligence, diligence, sanity and most of all sense of self worth with this God forsaken son of dog disease!
Waiting for test results is the hardest part of HCV regardless if the waits are during treatment or post treatment. I am sure all here feel the same way.
Please don't blame yourself or anyone if indeed you have relapsed. If you are still feeling energetic and otherwise in good health with normal or near to normal liver functions then most likely if anything the Harvoni treatment if it did fail, may very well have slowed down the progress of the disease somewhat.

When I was treated in 2003-04 with interferon and my liver was given almost a year of at least lower levels of infection the treatment, though a failure may very well of temporarily slowed my progress to cirrhosis. I had genotype 1a and before treatment in 2014-2015 and cure my sense of self worth was at a terrible low because my overall health was failing.

But enough about me: I know your mind is reeling and I know well what you are going through. Brother please do not beat yourself up over what is happening.
Eric

dandyindeed · « **Reply #64 on:** August 25, 2018, 11:54:21 pm »

Sometimes the best or only good part part of living is that I'm not using cocaine and don't even think about it. It was using cocaine that got me this hep c

slats1056 · « **Reply #65 on:** August 26, 2018, 08:21:49 am »

I am having a little trouble with the link that DANTON supplied but there is a ton of info. there!! DRAGONSLAYER( Paul) I thought that Oxford study had a lot of info. & was an interesting read as well. TYPE O Hit the nail on the head Big time. Not pessimistic at all. I would say realistic. More along the lines of this---- Three people are discussing the definitions of PESSIMISM-OPTIMISM-& REALISM!!! While the first two are explaining the differences of a glass of water on the table being half empty or half full , the realist just listened to them as He drank the glass of water!!!!! I classify myself in that category--- LOL! MUGWUMP No offense taken at all, the stress , doubts , insecurities , & short comings all come out in a wave when a crisis like this strikes. The Psyche has no choice but to turn inward and reflect--critique--blame something--troubleshoot--rationalize things. Unfortunately not always correctly and always going into sensory overload as a way of coping and trying to deal with said crisis. Here on the Forums , calmer heads prevail & bring back to a grounded state! That being said I always look forward to the insight and thoughtfulness provided by You & others here!!!!! LUCINDA!!!!HELLOOOOO NURSE!!!! ROTFL

I took Your presciption to heart Yesterday. I shut down electronically for a while to recharge !! The result being that I watched a lot of Comedy/Cartoons, that is where the Nurse joke comes in, LOL! I woke up extremely early today so its' catch up on the News and the Forums . I was reading an article by Greg Jefferys dated July 28,2016 titled THE R WORD:THE SAD REALITY OF RELAPSE (Great title I must say!) It mentions Magnesium , which was a supplement I took regularly BEFORE Tx. and AFTER SVR12. Was just wondering if any residual from before Tx. or re-starting post tx. could have any co-relation to relapse/Harvoni?

? I stopped ALL supplements and vitamins before starting Tx. by about two weeks. I also am a regular coffee drinker , 3-5 mugs in the morning! Was told by the Doc that he saw no problem , just in case check with the Specialty Pharmacy Rep. for My Rx. and was given the thumbs up to go ahead. Just two minor thing that popped up while thinking about relapse. TIME FOR ANOTHER CUP OF JOE FOLKS

Later!

slats1056 · « **Reply #66 on:** August 26, 2018, 08:57:01 am »

Dandy , I can totally relate in spades

. First and foremost take care of Yourself, if You don't , no one else will. Try to be truthful and patient to and with Yourself. As far as Your partner , You can't control them or what they do. All You can do is try to communicate to the best of Your ability with out compromising Your own integrity and seek help if needed. Stick around and check things out. Lots of info. & insight into before , during , and after treatment. A veritable Cornucopia of reference here. Take some time to look around and PLEASE don't dwell on the negatives ( a lot of them are mine , LMFAO! ) embrace the positives, a lot of us vent and rant at times but, there is a lot of spirited discussions that point out the unknowns and prompt new info. as well

Good Luck and Good Health!

slats1056 · « **Reply #67 on:** August 26, 2018, 05:14:23 pm »

I have been wondering all weekend why testing is not recommended strongly for SVR12, 24, 48 and at least yearly there after! I am thinking maybe it is a cost issue for the Insurance Companies!

Just got finished reading up on Vosevi and Mavyret on the website www.hcvguidelines.org dated August 18, 2018. Looks very promising as You guys said. A little peace of mind at least. Now to wait for a new set a Labs for verification and all pertinent info. to find out what comes next!

$:-\$

dragonslayer · « **Reply #68 on:** August 26, 2018, 06:15:15 pm »

Quote from: slats1056 on August 26, 2018, 05:14:23 pm

I have been wondering all weekend why testing is not recommended strongly for SVR12, 24, 48 and at least yearly there after! I am thinking maybe it is a cost issue for the Insurance Companies! Just got finished reading up on Vosevi and Mavyret on the website www.hcvguidelines.org dated August 18, 2018. Looks very promising as You guys said. A little peace of mind at least. Now to wait for a new set a Labs for verification and all pertinent info. to find out what comes next! $:-\$

Given the overwhelming odds (fraction of 1%) that relapse post SVR, it becomes cost ineffective to recommend it as a post treatment strategy, your case notwithstanding. My doctor had me tested at 48 wks post, which Im glad he did.. But I was a slow responder and was detected at EOT and even 8 wks post.

danton · « **Reply #69 on:** August 26, 2018, 07:07:28 pm »

Yes, anything that effects less than 1% pertaining to tests run medically is never recommended strongly.
Also keep in mind that the <1% is what the current research shows for after wk.12 up to weekb24. After that the numbers get infinitesimally small.

As I mentioned above in a prev post though like dragonslyers doctor did ,many are recommending
at a minimum 24 and some 48 to be sure.

However slats,look at it this way.If you had tested VL again later it would still not have changed the result other than you would have known before now and that may have made your anxiety about relapse even worse.

What I mean by that is there is 2 salvage treatments available(Vosevi & Mav) but have only been on the market for about 11 months.

So if you tested at say week 24 and found relapse you would have had to wait 2 years to treat anyway with all the anxiety and worry about if they were going to come up with a good salvage regime

As I mentioned prev. there were a total of 75 1b patients in the Polaris Trial that had failed Harvoni and a few other regimes with an NS5a in it and the success was 100%.(one pill a day 12 weeks and with no real side effects of note.)

You will do great.

danton · « **Reply #70 on:** August 26, 2018, 07:17:49 pm »

Also , you mentioned your new gastro may scedule a biopsy??
I don’t know why you would have to do that as they are not performed much these days and it would not change the regime anyway. Vosevi had the same results regardless of damage including chirrotics.

danton · « **Reply #71 on:** August 26, 2018, 07:18:23 pm »

Also , you mentioned your new gastro may scedule a biopsy??
I don’t know why you would have to do that as they are not performed much these days and it would not change the regime anyway. Vosevi had the same results regardless of damage including chirrotics.

lporterrn · « **Reply #72 on:** August 27, 2018, 01:13:51 pm »

I wrote this because of my experience here. Thank you everyone! https://www.hepmag.com/blog/passionate-hepatitis-c-support-groups

Lynn K · « **Reply #73 on:** August 27, 2018, 04:03:22 pm »

Nice article very heartfelt Lucinda.

You could visit us more lol

Your guidance and wisdom are always appreciated

lporterrn · « **Reply #74 on:** August 27, 2018, 04:09:09 pm »

Thanks Lynn. Truth be told, I visit regularly, but you all have such good response, there isn't much to add! So, I just sit back and feel appreciative.

I fightis thetitis · « **Reply #75 on:** August 28, 2018, 05:40:58 am »

Hey Slats,

Hang in brother.. it will all get better soon.
If this is possible, and you have affordable health care, you may be able to just visti the ER and they can run a CBC and liver panel.

I was experiencing some abdominal discomfort, went to ER and explained tx ect, and was blown away at how fast they got my labs back.. 30 mins/ish and my out of pocket was only $25.00 billed later.

I understand you may already have a GI appointment, and if there is anyone else out there that might get anxious and want to know or get an immediate second opinion, the ER's is a resource and I suspect all are now set up to get results right away.
A quick call to confirm they can do it.
They may even be able to test for HCV as well..

We are pulling for you. Some amazing people and resources here.
Lucinda, Lynn and Mug always seem to have some sage wisdom.

Best always,
Greg

lporterrn · « **Reply #76 on:** August 28, 2018, 06:40:45 pm »

I know that sometimes the ER is the best option for some, depending on the resources in their community. However, the ER is for emergencies, and there can be stiff consequences in some communities when it's used for non-emergencies. (Such as high co-pay or being put on a list, which flags you in the future, which may delay you being seen when you really need to be seen). Although this advice is well-meaning, in this case, I don't think it is a good use of the ER.

I fightis thetitis · « **Reply #77 on:** August 29, 2018, 04:27:17 am »

Thanks Lucinda,

I did not know about consequences in ER for non- emerg. I stand corrected.

Of course in my case I felt it was enough of an emerg bc with any serious ab pain plus cirrhosis, plus workouts, I may be more prone to a Variceal bleed, thus I have been told by more than one Dr. "don't be a hero..get to the ER and better safe than sorry."

I was blown away at how fast my labs came back and forgot to factor in the non emergency point for my fellow heppers.

Thank you once again for sharing.

G

lporterrn · « **Reply #78 on:** August 29, 2018, 11:57:35 am »

Greg - thanks for reminding me to say that the ER is THE place to go for an emergency, and without hesitation. I've heard too many horror stories of people ignoring chest pain or other serious signs of life-threatening conditions.

One time I was on my vacation and my husband had an adrenal crisis, which is life-threatening. The person sitting next to me was there for TMJ pain. I was shocked. But I get it that she didn't have insurance and it felt like her only option. Healthcare needs fixing.

northfork · « **Reply #79 on:** August 31, 2018, 11:31:58 pm »

Sincerely hoping that a lab error has happened here.

KimInTheForest · « **Reply #80 on:** September 02, 2018, 12:03:04 pm »

Hey Tommy - my treatment buddy of 2015, the year of the Conga line! You kept us all laughing. Just reading about this now. Sending you cyber-hugs from my coast to yours! This is crazy awful news. Feeling for ya! I'm going to be following this thread for updates. But for sure - give yourself a break whenever you need to, for however long you need. You've been through so much these past 3 years.

Much love,
Kim

slats1056 · « **Reply #81 on:** September 03, 2018, 12:34:48 pm »

Hey Guys, Just did some work on My signature to update info. that I have found so far after digging through boxes and around the house. Scheduled appointment 9-7-18 for abdominal Ultra sound ( AFP Tumor markers up ) and new Gastro & Internist for results and new screening to see what is up with relapse as well as how to proceed from here. Also, have to have a tooth removed by dental surgeon that has some gnarly distorted roots and an abcess. Dentist said she won't even attempt it. YEA , My bad luck seems to be holding out!!!!!

I appreciate all of the well wishes , virtual hugs and such from all of You out there in Heplandia! If I have any new info. or questions , I will post. If You guys have any questions or info. , fire away and I will try to answer them.

danton · « **Reply #82 on:** September 03, 2018, 01:36:59 pm »

Hi slats,

Good to see you again. There are a couple of things that stick out to me on your updated sig.line. Possibly you have just mistaken the dates or mis-typed.

I see you put your EOT date was Oct.15th and then your EOT +12 was Dec.15th.

If those dates are correct then your doctor ran the supposed SVR 12 at only 81/2 weeks,

That could be important as the research shows that the number of people studied that relapsed between week 4 and 12 was significantly higher than after week 12.

Still rare but still higher.

The second thing that stands out is that your AST &ALT are in the normal range even up till this last test almost 3 years post treatment.

As we all now those are Red Flags post treatment and if relapse has happened they usually rise(not in all cases,but most)

So ,all very odd indeed slats and glad you are going to finally get some answers in the next few days.

Good luck

slats1056 · « **Reply #83 on:** September 03, 2018, 03:07:57 pm »

A little of both Danton , brain fart and fat fingers. If memory serves Me correctly it was eleven weeks at draw 12-30-15 and results 1-18-16 due to Holidays schedule , Lab closed , vacations , and so forth. I re-typed the dates to include MONTH-DAY-YEAR to be a little clearer, so that would make it SVR11 actually! Wish I had the presence of mind to be a little more diligent with the Labs. and requested follow up testing at 24 weeks. That was about the time that SHTF on the home front and everything went to hell in a hand basket. Just out of curiosity , I noticed You didn't have any info. in Your signature field. Then I noticed You were a recent member. I appreciate Your posts as well as Your concerns and attention to detail as I have a tendency to get scattered at times. Welcome to the Forums Big Guy!

Steve76 · « **Reply #84 on:** September 07, 2018, 07:53:51 pm »

Steve76 here again slats. You also mentioned your AFP levels are elevated. Your signature information has your AFP at 6.3 which is in the normal range. I think you need a new clinic and care providers, something sounds off in my opinion.

Possibly your AFP #s are higher than your earlier ones? Still it is within the normal range. Your enzyme levels are normal as you know. Something is off here.

Personally I would have gone and gotten a second opinion immediately after receiving the report

Good luck!

slats1056 · « **Reply #85 on:** September 08, 2018, 09:03:58 am »

Hey Steve, Yea , My AFP markers are elevated compared to previous tests , but still under 10 which is the normal range. Since the anamolies that are present as well as some tenderness in the liver and some abdominal discomfort I am having more testing done. Internist is interested in finding out why all indicators are in the normal range , but the Quantifiable viral load is present. Trying to rule out any errors , false positives , ETC.! Next week I go to My new Gastro who would probably want an ultrasound done anyway. He will do the second opinion as well as the screening for what will be done this time around for treatment should it be required.

slats1056 · « **Reply #86 on:** September 08, 2018, 09:15:39 am »

BTW , I have used this lab and the one at the Hospital for many years and have not had any problems to date! With the exception of one set of Labs lost at the Hospital that had to be redone during treatment in 2015. Everyone is trying to figure out cause of possible relapse including ERRORS , and or HOW I was re-infected. Definitely as Jig Saw puzzle of large proportions.

THE WAITING GAME BEGINS.

slats1056 · « **Reply #87 on:** September 15, 2018, 12:15:35 am »

Hello My Forum Family!
Got a call from My internist today , Abdominal ultra sound looks good. Liver and all looks normal with no anomalies or question marks with the exception of gall stones , which have been there for years.
Went to the new Gastro. this afternoon. Asked him about testing for Cryoglobulinemia and He was not concerned at all. Didn't see anything that warranted testing. Went through all the possibilities for a re-infection with him. His only concern was maybe a family member connection. My oldest daughter has been out of the household for years , so I am going to have the two younger ones tested in the near future. In the mean time remove any possibility of household items that could be a source of the virus just in case. Completely eradicating as many variables as possible. The topic of the separated spouse came up as well , no contact for several years. So that is pretty much ruled out. Still will ask her to get tested as a precaution.
Got orders for blood tests--A,B,C,Genotype,Fibrosure , ETC. Medical assistant wanted to get tests done next week , but I said screw it & had them done today. The sooner the better , and I had taken a half day off for the office visit anyway. As soon as Labs come back I go back for results and consultation about what to do going forward. Strange no one seemed worried about relapse only re-infection. But that is splitting hairs , second opinion comes back positive and will still be HCV either way You look at it!
Doc seems to think that Mavyret fits the bill considering Profile and history with Harvoni . If all goes as I believe it will , Monday the Med. Asst. will start the ball rolling to fast track Rx. From Abbvie and the insurance company for approval as soon as needed. All that remains will be to determine treatment duration and clear up any questions and concerns by the powers that be!
I am stilled baffled by the turn of events as related to relapse/re-infection! If errors are ruled out and second set of labs. come back positive , I am either an exception to the rule or just one unlucky S.O.B!!! The thought just crossed My mind that maybe it is both judging by My track record. LOL. I will be doing research on Abbvies Mavyret clinical trials info. and any related info. that I can find. I am still stressed as shit what with all that is going on , but I seem to have settled down a bit and realize that life still goes on. I can not control what happens ,but can influence the outcome by My actions and reactions to all that surround Me!
I will be in touch with any new info. as it emerges. Thanx again to My Forum friends and family who I can count on unconditionally in this screwed up tragic comedy that is life!

$:-\$

Tommy

KimInTheForest · « **Reply #88 on:** September 15, 2018, 12:24:58 am »

That's great that your doctor is on it and attending to things promptly, Tommy! Still pretty baffling - the relapse or re-infection question. But at least it is fixable. Thanks for updating us! I look forward to your next news.

kim

lporterrn · « **Reply #89 on:** September 15, 2018, 06:58:08 pm »

Thanks for letting us know. This has been quite the ride!

Mike · « **Reply #90 on:** September 16, 2018, 06:48:09 pm »

Hang in there Slats. I know this setback is disappointing. The good news is that you have an excellent medical team and you have treatment options that will help you clear the virus.

Best wishes, Mike

slats1056 · « **Reply #91 on:** September 16, 2018, 07:49:26 pm »

Hello Guys,
Thanx Kim,Lucinda, & Mike! The waiting game begins yet again! LOL

As I interpret the info. concerning Mavyret , I should probably be approved for 16 weeks Rx. for My genotype and previous Tx. with Harvoni. I just wish I had some test results at 24 weeks and after to determine possibility of relapse. Other than getting the kids tested for possibility of reinfection , all other possibilities have been ruled out at this point. Still can't come up with anything pertaining to the flood from Hurricane Harvey and its' aftermath , but that time period is all a blur. I suspect it was around October or November of 2017 as I was getting really run down after working 11-12 hour days and going to the house and working for several hours. I was understandably stressed out big time as well as overworking myself to the Max. It was around then that I noticed the old symptoms , but wrote them off to all that was going on and ignored them. All of the other B.S. going on in My life didn't help either! LMFAO!

Never have been much for Doctors , But knew that I needed to get checked out and get back on BP Meds. as well as liver panel done due to History and advancing age. Look pretty good on the outside for being 62 next week

, I can only imagine what the insides look like as I put them through hell in My younger days.

Whats' the old saying---IF I KNEW I WAS GOING TO LIVE THIS LONG I WOULD HAVE TAKEN BETTER CARE OF MYSELF

ROTFL

.

Well here We go again , hurry up and wait. It is just a little rough with legal , dental ,medical , inventory at work , working on the house , and all the regular housework and yard work that still has to be done! Did I miss anything??? Probably so but , it ain't gonna get done by itself. Somebody has to be the designated MF'er and it usually is Me

Thanx Again Guys! I will check back in later!

Tommy.

P.S. Blood pressure is through the roof , and still have severe tinnitus as well as joint pains big time since Harvoni treatment . No Meds. other than for dental work and BP. Rx. Still taking My supplements and trying to eat and stay as healthy as possible. Haven't been able to kick the smoking habit , but have them down to 2-3 packs a week compared to 2-3 packs a day prior to treatment.

danton · « **Reply #92 on:** September 17, 2018, 10:00:52 am »

Hi slats,

Glad to see you have been re-tested and will finally see what is going on.

Mavyret had excellent results in trials ,as you most likely have looked up by now and is also having great results when prescribed clinically.

It is being prescribed now for relapsers as well as treatment naives. The only difference is duration.
As you mentioned it is 16 weeks for relapsers and interesting for those without chirrosis and naive usually only 8 weeks.

Still holding out hope for you this was a lab error,however in the worst case scenario and you either have relapsed or been re-infected your chances of success are beyond excellent.

Good luck

jakas · « **Reply #93 on:** October 10, 2018, 03:45:22 am »

This is so so scary

slats1056 · « **Reply #94 on:** October 18, 2018, 11:01:18 pm »

Got a letter and a call from new Gastro. to come in for consultation. Med. Assistant will call in the next week about delivery of Mavyret from Abbvie and set up a schedule of routine testing during treatment. She said she would give Me hard copies of the Labs then! Was told it will be 16 week Rx. for Me. Soooooo----have not seen it in person , but it looks like relapse has been confirmed!!!! Still need to get the kids tested to ease My mind as it is still going 90 miles an hour. Urologist Dr. says all is good. Blood pressure still through the roof but, slowly dropping as Meds. stabilize in My system. As soon as the hard copy is in My hands I will post the stats.
Well!!!! Here I go again Kiddos!!! I don't suppose there are any relapsers out there that will be My treatment buddies?

? I hope not!!!LMFAO!
Will get back to You guys soon , as I still have a butt load of Dental and Legal stuff going on at the moment as well as work!

Good Health To all of You Good People out there in Heplandia!!

I fightis thetitis · « **Reply #95 on:** October 19, 2018, 12:43:24 am »

Hey there Tommy,

When you get your labs back, if the geno type is any other type then 1b, that would confirm re infection. A 1b on your labs would suggest or indicate relapse. Correct?

I have not heard of another who has relapsed after such a long viral hiatus. Was it almost 3 years?

This is a speculative question for the us trying too figure this odd occurence out, I wonder if having a high or low HCV antibody count could be a factor in relapse??

Pulling for you mate!

Greg

KimInTheForest · « **Reply #96 on:** October 19, 2018, 01:03:09 am »

Thanks for the update Tommy! I've been thinking of you. You have sure been through a lot. At least treatment is nearly starting.

Kim

slats1056 · « **Reply #97 on:** October 20, 2018, 10:54:28 am »

Hey Greg,
Not a medical professional by any means. However , another genotype would mean another infection (doubtful, no known reasons or causes that are evident) or a dual infection as I understand it. Reinfection has pretty much been ruled out with the exception of getting My two adult kids tested (reinfection by a family member). There is a slim chance , but a chance none the less, so I am having them tested. The only wild card is the Flood from hurricane Harvey last year , and nobody can come up with any co-relation to HCV. I have about a year gap in My labs from August 2017 to August 2018 for several reasons. Gastro. Doc retired , dealing with the flood , repairing the house , family problems, ETC. , ETC.

I think it is about 2 years & 8 months more or less.
Still checking around about long term SVR relapsers , but not much info out there! I get the feeling that ALL the medical community that I am dealing with want to pin this on re-infection on My part rather than a re-lapse , which is a load of B.S. and I know it. That is all that matters besides getting re-treated.

$:-\$

Hey Kim,
Waiting on the call and researching Mavyret. Hope all is good with You north of the border!

HAS ANYONE RUN ACROSS ANYONE OR HAVE ANY INFO. OR STATS ON PEOPLE THAT ACHIEVED SVR FOR 12 OR MORE MONTHS AND RELAPSED?

Mugwump · « **Reply #98 on:** October 20, 2018, 08:08:00 pm »

Slats; it would be just plain asinine IMO: if they do not consider that you may never have cleared the virus with 12 weeks of Harvoni plain and simple.

What is most concerning here, (I take it), is that you have retested positive for 1b and are being retreated for 1b. It is genotype 1a that has the NS5A resistance variant failure problems with 12 week of Harvoni treatment for those without prior treatment and cirrhosis. Certainly not those with genotype 1b and no previous history of treatment or cirrhosis.
What is also interesting and baffling, is that your liver function currently seem almost normal. It could very well be that knocking back the virus in your case with a DAA treatment brought the infection levels down to where your immune system is keeping it almost completely in check. It is known that some people go on to never develop problems or cirrhosis with HCV and live their entire life without knowing that they ever had the infection.
Either way getting retreated is still the best option, because knowing that you can never infect anyone accidentally with this POS disease is priceless

. For me not instantly worrying about cleaning up every little drip from a cut or a stick from a fish hook was worth the price of admission.
Eric

Lynn K · « **Reply #99 on:** October 20, 2018, 10:51:27 pm »

For me I was probably infected in 1978 but my liver enzymes were normal until 1990.

I know they were normal when I left the Army in 1988 and a year later in early 1989 I had a physical at a civilian doctor and my liver enzymes were normal then also. But when I donated blood in the fall of 1990 I learned I had elevated liver enzymes and had tested positive for hep c antibodies.

I am reasonably confident about when I contracted hep c.

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