Author Topic: Veikira Failure? (Read 14357 times)

Rick369 · « **on:** March 03, 2016, 08:44:31 pm »

Hi all, Very sad to report probable failure of my Veikira + Ribavirin treatment last fall. Got labs drawn today so it's not confirmed but I have that same old ache in my side that tells me I am having a flareup. Ya just know - ya know.
Previous fail with Interferon and Ribavirin in 1999.
Anyone have words of advice for a retreat? I was feeling so good there for a while and it's very disheartening to go back to that sick feeling and the constant reminder that your liver is slowly being destroyed.

KimInTheForest · « **Reply #1 on:** March 03, 2016, 09:28:39 pm »

I very much hope that is not the case for you Rick - relapse, that is. But wait until your VL test comes back. Quite a few of us have experienced that all-too-familiar flank soreness post-treatment that you describe. Yet it turned out we were in fact still undetected. The liver and body are going through a lot after the virus is cleared. And there are other things that can cause that kind of liver irritation that we have grown accustomed to associating with Hep C.

Maybe others will chime in on retreatment protocols for Viekira failure, since I don't know. But wait for the lab results. You may be pleasantly surprised.

kim

lporterrn · « **Reply #2 on:** March 03, 2016, 10:23:52 pm »

Rick - I suggest waiting for the results. If I had a dime for every time someone told me they were certain they relapsed because of symptoms, I'd be a wealthy woman. Let us know.

Lynn K · « **Reply #3 on:** March 04, 2016, 12:19:36 am »

Hi Rick

I have a mild pain in my liver on occasion but my 24 week post treatment result last October was not detected.

Don't borrow worry and disappointment from a tomorrow that may never come.

Good luck with your test results

Philadelphia · « **Reply #4 on:** March 04, 2016, 02:12:34 am »

Hi Rick, you were SVR12 in November yeah? It's highly unlikely you'll be experiencing a relapse. I hope you will keep us in the loop as regards your VL results. The waiting is the worst part. Thoughts are with you.

jakas · « **Reply #5 on:** March 04, 2016, 04:43:42 am »

I have the same liver pain started a week before EOT its off and on I thought it was over but I am wiser now reading the posts above.

Rick369 · « **Reply #6 on:** March 04, 2016, 08:52:06 am »

Thanks for the kind words and support. Will wait for my labs of course, but my pain is anything but mild at this point. Hard to figure what that could be other than a relapse. Have a fantastic day! Rick

Lynn K · « **Reply #7 on:** March 04, 2016, 03:38:25 pm »

Just to try to reassure you as far as I know there have been no relapses after SVR12 so really the odds are very much in your favor. Have you asked your doctor about that pain?

If you didn't ever have hep c you would probably want to have a strong pain checked out it could be a lot of things and some could need attention sooner rather than later.

Could be something going on in your digestive track could be maybe gall bladder or appendix or lots of things.

So while you are waiting if it were me I would have it checked.

Best to you
Lynn

Lynn K · « **Reply #8 on:** March 04, 2016, 03:56:17 pm »

http://www.mayoclinic.org/symptoms/abdominal-pain/basics/causes/sym-20050728

Abdominal pain has many potential causes. Many causes, such as gas pains or a pulled muscle, aren't serious, while other conditions require timely medical attention.

Rick369 · « **Reply #9 on:** March 04, 2016, 08:31:38 pm »

My pain is the same as what I experienced prior to treatment with Veikira - it waxes and wanes but has become really bad at times as I have aged. Get regular ultrasounds and advanced imaging (forget the type) but nothing has been identified.
It's my understanding that this is a normal thing for a lot of Hep C sufferers - not that it makes me feel any better or less frightened. Will soldier on and wait for blood work results. Thanks Lynn

Lynn K · « **Reply #10 on:** March 04, 2016, 08:49:09 pm »

Hi Rick

Do you have cirrhosis? That could also explain the pain. Even when cured of hep c those of us with liver damage and cirrhosis will still need to deal with the damage left behind by hep c. Even though our hep c is gone we will still have our liver damage from years of hep c infection.

dragonslayer · « **Reply #11 on:** March 04, 2016, 11:37:03 pm »

It took me about a year after successful treatment with Harvoni for those upper right quadrant pains to completely disappear! Ive never had any tests indicating I had cirrhosis. Indications were quite the contrary with 2 biopsies, 1 as recently as a year and a few months prior to treatment, and the other in 2008, both of which showed stage and grade in the 0-1 range, with virtually no progression in the years between; this after having had HCV for 40 yrs.

So, even with no cirrhosis and minimal liver damage, it can still take a year, in my case, for healing to reach a point where those annoying pains disappear.

CureSeeker · « **Reply #12 on:** March 05, 2016, 07:35:57 pm »

Wow, I'm so happy I read this thread! I'm not sure why I did, since I didn't take the drug in the title. Thanks Rick for making it though, and for everyone reporting that they had the same experience.

I too am experiencing pains in the same area since completing treatment. I was concerned it was my liver, since I haven't had a gallbladder to blame (not as severe as gallbladder pain by a long shot either) since I was 27.

Dragonslayer, I'm happy about your post as well. You outline a timeframe to look forward to no longer having this nagging reminder giving me a mild poke or two from time to time.

I confess I was a bit worried too, but when my 3 month came back undetected I felt a little better. Its a relief to learn its something rather commonplace.

Thanks again everyone!

Philadelphia · « **Reply #13 on:** March 05, 2016, 07:44:54 pm »

And then you get people like me who have had no liver pain despite cirrhosis and forget what side of the body their liver is on. Is it the left?

CureSeeker · « **Reply #14 on:** March 05, 2016, 08:17:15 pm »

LOL, Philadelphia!

(It's the right. *winks*)

Rick369 · « **Reply #15 on:** March 05, 2016, 09:17:05 pm »

Will get my blood work results next week, but really worried about a relapse. Felt like a new man after treatment and no pain or tenderness at all, so this is really disappointing. I still work (24 hrs a week) and am very physically active so it was a joy be well again. I want that feeling back!

CureSeeker · « **Reply #16 on:** March 05, 2016, 11:39:31 pm »

I totally understand the anxiety Rick. I'm paranoid about it myself, mainly because my husband relapsed - but he was more than a decade older than I am, and his liver health was not as good as mine at the time of his treatment.

There seem to be people whose age was like his, and their liver health worse than his, and even though they also relapsed, ended up with a positive outcome in the long run anyway.

Try to remember that maintaining a positive state of mind is the most important thing for all of us. As is said in the book, Dune, "Fear is the mind killer."

In the end, as I wrote on another thread where relapse anxiety was expressed, we all need to live for today, and worry about being happy.

We can trip on the sidewalk or slip on a banana peel, get hit by a bus or train, or any number of ways we can die right now, and then all the time we spent worrying about relapse and/or cancer would just be time and energy we wasted.

I know coming back undetected again is the best relief you can possibly get right now, but I also know that the fear of relapse probably secretly lurks in everyone's mind until whatever the timeframe is that they find themselves deemed to be completely out of the woods, and require no more testing - for me that is said to be after I get my results from my last labs that will be taken sometime in mid-November 2020, lol.

Be happy!

Rick369 · « **Reply #17 on:** March 06, 2016, 08:31:42 pm »

Thanks CureSeeker, Your kind words and advice are much appreciated.

I fightis thetitis · « **Reply #18 on:** March 06, 2016, 10:50:00 pm »

For 30 years I have had what some refer to as "Liver pain"
And, I have had 11 different GI's (I keep detailed records..sad hobby) who have varied responses to my "Upper Right Quadrant" liver pain.

In the 90's I was always told "that" pain had nothing to do with my Liver bc liver does not generate pain... yadee yadee yada. Until finally a great GI that had some progressive real life experience with Hep C told me, "when the liver becomes inflamed this creates a tension with the membrane case that surrounds the liver. The actual pain is NOT the liver itself but within the stretched membrane."
Specifically, a lesion or "viral flare up" can be the source of the pain for Heppers.
In most cases the difference between the two is an episode of a chronic viral flare up will last from a day to a couple weeks.
An example is some folks that carry multiple or co existing viruses like Hep C and Herpes, will get upper right quad pain during a Herpes outbreak due to excesive inflammation that causes swelling.

Lesion pain is more more rare, persistent and the severity of pain can increase over a short amount of time that typically does not go away after a couple of weeks.

She was also the best GI in regards to diet, exercise and alternative therapies for Liver health.

I later mentioned this a couple of other GI's and they were not as informed.

Cureseeker.. your labs will be back soon enough. Like many here I used to worry and imagine and have horrible assumptions about the future. The best advise I ever got came from dear old Dad,
"Son.. don't bleed until you get shot! Until then just be happy you didn't get shot!"
Thx Dad!

Peace all,

Greg

I fightis thetitis · « **Reply #19 on:** March 06, 2016, 10:50:52 pm »

Sorry Cureseeker.. I meant Rick 369!

Mugwump · « **Reply #20 on:** March 07, 2016, 01:05:14 pm »

Quote from: Philadelphia on March 05, 2016, 07:44:54 pm

And then you get people like me who have had no liver pain despite cirrhosis and forget what side of the body their liver is on. Is it the left?

Who knows considering that cyclonic action in Australia and water goes down the drain backwards you might very well have your liver on the left hand side. You do drive on the wrong side of the road.

I too have the hepatic pain still lingering and am SVR cured. But my pain eases greatly when I fluff, which according to my wife occurs far too frequently.

Cheers
Eric

Rick369 · « **Reply #21 on:** March 07, 2016, 08:11:00 pm »

Good info "I Fightis" I was always told there should be no pain, but the people saying that don't have Hep C of course. My troubles sure feel like a flare up.
I am a VA patient and you really don't get to see a GI specialist at all. I asked about pain once and couldn't get a straight answer - one Doc thought I was seeking pain meds or something. I have gotten generally good care at the VA but it does annoy me that you see a primary care physician before, during and after treatment. They no nothing of these drugs.

CureSeeker · « **Reply #22 on:** March 08, 2016, 10:44:09 pm »

Quote from: Mugwump on March 07, 2016, 01:05:14 pm

I too have the hepatic pain still lingering and am SVR cured. But my pain eases greatly when I fluff, which according to my wife occurs far too frequently.

Cheers
Eric

I read this this morning and I started paying attention. I think you are onto something.

I've begun to notice a correlation between the pain, and a moment or so later - gas and/or solid and/or both! (Cant believe I'm writing about this like its really exciting news, lol.)

Makes me feel a lot better about the pains. Thanks Eric.

Rick369 · « **Reply #23 on:** March 30, 2016, 01:08:09 pm »

Turns out no relapse. I am still undetectable and very happy about it. Still no answers about what caused my pain, which has since abated.

lporterrn · « **Reply #24 on:** March 30, 2016, 01:28:34 pm »

Sure nice to have reassurance, although the pain will likely remain a mystery. In time it gets easier to trust that cured means cured.

Philadelphia · « **Reply #25 on:** March 30, 2016, 05:08:31 pm »

Well that is excellent news!

Pete · « **Reply #26 on:** March 30, 2016, 11:46:46 pm »

Great news indeed Rick on your recent lab results! I think your home free now. I do hope you liver discomfort steadily declines over time and starts to mend.

Regards,
Pete

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Author Topic: Veikira Failure? (Read 14357 times)