Had hep-c will it ever come back?

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rinkydink
New Member


Date Joined Feb 2011
Total Posts : 13
   Posted 2/28/2011 5:59 PM (GMT -7)   
Found out I had hep-c during a blood donation, went through the interferon treatments for only 6 months, but for me it was 6 months of hell! I really felt like I was going to die. Is there a chance this could come back, or affect me down the road? I did all the heavy duty drugs in the 60's and 70's, and paid the price later on.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/28/2011 6:47 PM (GMT -7)   

"I did all the heavy duty drugs in the 60's and 70's, and paid the price later on."

Me, too, Rinkydink, though it was only 60s for the heavy duty ones.  I tell everyone I survived the 60s...barely.

Welcome to the forum!

Rinkydink, how long have you had clearance; that is, how long has it been undetectable?  As you know, you should have had the full course of treatment, as that's the best way to ensure that you've totally cleared it from your system.  However, that's not always true.  It CAN come back.  This recently happened to our member David some months after transplant.  He's back on treatment now.

You might be interested to know that there is a new treatment on the horizon that adds a 3rd drug and only has to be taken for 24 weeks.  This should become available in the 2nd half of this year (I keep reading "spring" but the FDA doesn't always approve quickly.)  Just keep that in mind if the C comes back.

How often do you have bloodwork done?  Are you having any fatigue or other symptoms of hep C?  I noticed that you're on the Fibromyalgia forum.  That disease might make it difficult to differentiate between that and liver disease.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

hepmom
Regular Member


Date Joined Oct 2010
Total Posts : 164
   Posted 3/1/2011 3:53 PM (GMT -7)   
If you have achieved a sustained viral response (SVR) the virus will not come back.  The only time it does come back is if you are reinfected! So watch blood to blood contact. Congratulations on your SVR :)
 
@Connie, David did not achieve SVR before transplant so of course the hep c was still there with the new liver.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3372
   Posted 3/1/2011 5:37 PM (GMT -7)   
hepmom,
That's not totally correct. In 2004, after 3 months of interferon/ribavirin, the virus was undetectable and continued to be so for the last 9 months of treatment. Another 3 months of going undetectable and 6 years ago today 3/1/2005 I had a cerebral hemorrhage, and all seemed fine (other than the stroke). A couple of weeks later I had a seizure and my liver began to fail, from the trauma. With that, my Hep C was back with a vengeance. So, you're correct that prior to my transplant, I was infected.However I was never reinfected after having been undetectable for a solid year. I have spoken to 4 different hepetologists and all of them say that there's no such thing as being totally clear of the virus. Do you have any data to back up the idea that SVR means the virus is gone forever? If so I have yet to hear of it.
"No good deed goes unpunished."

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/1/2011 6:20 PM (GMT -7)   

David, I know I've heard of others who cleared the virus but later had it come back.  So I tend to agree that it is not 100% cleared for the remainder of your life.  I don't know if those people were reinfected from an outside source, but I don't think so.

I guess March 1st is a date you will never forget!

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 3/1/2011 6:22 PM (GMT -7)   
I did one little thing the docs didn't tell me to do, but did it anyway--Threw out ALL my pierced earrings and bought new as I could. Of course new toothbrush, razor, all that. Just worried that I'd be dumb enough to give it back to myself!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 3/1/2011 6:23 PM (GMT -7)   
I forgot to add I had tx almost 20 years ago and still pcr negative-o, unfortunately, I have other problems....
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

hepmom
Regular Member


Date Joined Oct 2010
Total Posts : 164
   Posted 3/1/2011 11:39 PM (GMT -7)   
**David** said...
hepmom,
That's not totally correct. In 2004, after 3 months of interferon/ribavirin, the virus was undetectable and continued to be so for the last 9 months of treatment. Another 3 months of going undetectable and 6 years ago today 3/1/2005 I had a cerebral hemorrhage, and all seemed fine (other than the stroke). A couple of weeks later I had a seizure and my liver began to fail, from the trauma. With that, my Hep C was back with a vengeance. So, you're correct that prior to my transplant, I was infected.However I was never reinfected after having been undetectable for a solid year. I have spoken to 4 different hepetologists and all of them say that there's no such thing as being totally clear of the virus. Do you have any data to back up the idea that SVR means the virus is gone forever? If so I have yet to hear of it.
You have to be undetectable for a full SIX months AFTER treatment finishes to acheive a sustained Viral Response.  What happened to you david is a relapse which is quite common after treatment stops.  You cannot count the time you were on treatment the clock starts ticking when you finish treatment and you have to wait for the six month mark to consider being "cured" (it is just term) from what I understand of your story you only made it to three months. Lot's of people are undetected by week 12 of treatment but the virus either breaks through later on in treatment or they relapse when treatment is finished. 
 
SVR is the closest you'll get to "a cure" for hepatitis C. If you google studies David you will get proper and up to date information on the virus and make up your own mind whether the virus can just come back at any time. Anyone with hep c or doing treatment should be proactive and do research so that they can give themselves the best chance of clearing the virus for good.
 
Are you undetectable this time around? I hope you are because my fingers are crossed for you :)

hepmom
Regular Member


Date Joined Oct 2010
Total Posts : 164
   Posted 3/1/2011 11:41 PM (GMT -7)   
cured4real? said...
I forgot to add I had tx almost 20 years ago and still pcr negative-o, unfortunately, I have other problems....
wow 20 years ago! you must have been on of the first people to do txt......

rinkydink
New Member


Date Joined Feb 2011
Total Posts : 13
   Posted 3/2/2011 10:41 AM (GMT -7)   
Thanks for all the replys, Connie it has been 6 years since I went through the treatment & I was declared viral free back then, but haven't been checked since. And yes I am on the fibro page too and have an appt. with a rheumy. in April because I have severe pain in joints and mucles and lower back, also have severe sleep apnea. Have wondered if its really fibro or damage to my nervous system from the interferon & ribo meds I took for the hep-c treatment? (neuropathic pain) lately I have all over itching but mostly around the liver area, and abdominal swelling, so I think I need to have some bloowork done to see "whats up" tired of being in pain.
fibro diagnosed 8 yrs ago,severe sleep apnea, chronic pain,hep-c completed interferon treatments,carpel tunel, bi-polar.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2011 1:21 PM (GMT -7)   

Rinkydink, that rather astounds me that you have not been tested for C in 6 years!  I would think you would be tested at least once a year...and much more often in the first year after treatment has stopped.  I doubt you would have relapsed.  Let us know what is revealed by your blood work.  And best of luck!

Cured, I think it is doubtful that you would relapse after 20 yrs., but if you come up positive for HCV, you likely got reinfected.  I do think you were wise to throw out your toothbrushes, razors, and earrings.  I don't think I've ever heard of someone being reinfected that way, but why take the chance?  Good move! 

You must have done interferon treatment alone, as that's all that was available at that time...unless you were in a clinical trial for "the combo."  I was diagnosed in '93 and tried two rounds of interferon, but had to be taken off each time after no more than 6-8 wks. each time, as my white count plummeted so low.  I know that there were trials being done on "the combo" around that time.

Hugs,

Connie



hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 3/28/2011 3:56:30 PM (GMT-6)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3372
   Posted 3/2/2011 1:38 PM (GMT -7)   
hepmom,
Thanks for wishing me well. As far as getting facts from the internet, I prefer to listen to my hepatologist and 2 transplant surgeons. All 3 teach at Harvard and are heads of staff at Mass General. I know they're cutting edge (pardon the pun) and are as up to date as anyone in their field.
"No good deed goes unpunished."

hepmom
Regular Member


Date Joined Oct 2010
Total Posts : 164
   Posted 3/2/2011 2:28 PM (GMT -7)   
**David** said...
hepmom,
Thanks for wishing me well. As far as getting facts from the internet, I prefer to listen to my hepatologist and 2 transplant surgeons. All 3 teach at Harvard and are heads of staff at Mass General. I know they're cutting edge (pardon the pun) and are as up to date as anyone in their field.
The internet is one way of reading up to date published studies on Hep C. I do not just read rubbish and I do not believe everything I have read.... I also listen to my treating specialist and he listens to me, he likes that I am well informed about my own disease and my treatment options.  If I had not done research I would not have tested for IR or done the IL28B gene test as I would not have know to mention these tests to my specialist. He will gladly read studies etc that I want to discuss with him. My specialist is also one of Australia's top hep doctors.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2011 4:03 PM (GMT -7)   

Hepmom, please post a welcome or Hi! to Michael Kelly's thread.  He's an Aussie, too, and a new member.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

rinkydink
New Member


Date Joined Feb 2011
Total Posts : 13
   Posted 3/2/2011 6:13 PM (GMT -7)   
Connie, I think you confused me with 'cured 4 real' he/she was the one who gave up the old earings and piercings! I went through my treatment in 2004. Anyway just saw a regular Dr. today and they are doing all the blood work to see if the hep-c is detectable. He also gave me some Norco for pain, and said the Darvocet he gave me was not good for my liver. So I should have the results soon. He also set up an MRI of my lower spine.
I will post the outcome. Thanks for the feedback :o)
fibro diagnosed 8 yrs ago,severe sleep apnea, chronic pain,hep-c completed interferon treatments,carpel tunel, bi-polar.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2011 8:47 PM (GMT -7)   

Rinky, I addressed my comment to Cured about the earrings, below the post to you.  But it does get confusing around here sometimes when we get new members and a lot of new threads.

Do keep us posted.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

rinkydink
New Member


Date Joined Feb 2011
Total Posts : 13
   Posted 3/2/2011 9:12 PM (GMT -7)   
oops, ok I got it, sorry, hugs back to you.
fibro diagnosed 8 yrs ago,severe sleep apnea, chronic pain,hep-c completed interferon treatments,carpel tunel, bi-polar.

FeelingBetter
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/3/2011 2:45 PM (GMT -7)   
I believe Hepatitis C can be cured!

I obtained Hepatitis C in 1986 and was treated for 2 years with high doses of prednisone to keep my liver enzymes semi-close to a normal level until I went into a "remission" of sorts. Back then there were no better treatments and definitely no cures..

In 1996 I was treated with straight Interferon for ONE ENTIRE YEAR or as I like to call it "the year from hell and back". I had a lot of aches and pains and slept all the time. Three times a week I self injected mega doses of this drug into the large muscle areas of my body.

I have been Hepatitis C FREE now for over 15 years! My liver enzymes are normal and it is as though I never had it. I do not believe It will ever reoccur again in my body unless I was to re-infect myself, which is NOT going to happen. In addition, it is my understanding that your liver is one of the only organs in your body that actually can regenerate itself given time and a little TLC. That is after the Hep C is gone of course.

I was one of the lucky ones. At that time they told me I only had a 20 % chance of this treatment being successful and I lucked out and fell into this category. Never give up hope.... you too can find a way beyond Hepatitis C. New meds are being developed everyday for this disease.
----
For those who don't know.... Interferon is naturally made in your body. It is why when you get the flu you have aches and pains in your muscles. It's Interferon's way of fighting the virus off. So when you are treated for Hepatitis C with mega doses of Interferon your body hurts, the aches and pains are well... like a huge case of the flu.

My best to all of you who are still suffering from this disease, you are all in my heart and prayers. Like I said before.... never give up hope! If I lucked out...anyone can.

Post Edited (FeelingBetter) : 3/3/2011 1:48:41 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/3/2011 4:09 PM (GMT -7)   

FeelingBetter, welcome to the forum!  I'm so glad you truly are "feeling better" and have slain the dragon.  I agree--at 15 yrs., you would be considered cured and are not likely to relapse.

As I noted about, I also did the Interferon...in '93...3 injections a week.  I got pretty bruised up, but wasn't on it long enough to have any side effects, due to plummeting white counts.

I'm hoping to try the new treatment that's on the horizon, as it has a 75% clearance rate in trials and is especially effective against geonotypes 1a and 1b, which have been so difficult to treat previously.

Best of luck to you and thank you for sharing your experience.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Hep-back?
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/28/2011 3:45 PM (GMT -7)   
Hi Everyone,
 
I was diagnosed with Hep C around 1999 and went through a year of Interferon treatment.  This seemed to help for a while but in 2004 I found out it came back.  I am genotype 2 which is one of the more promising types for being cured.  In 2004 I underwent pegulated interferon therapy combined with ribavirin for approximately 6 months.  At that time the virus became undetectable.  I have been tested every year since and the virus never returned.
 
Last week I had bloodwork done.  I received a call from my doctor today and they left a message that they wanted to speak to me as soon as possible.  I was almost floored when they told me that it looks like the virus is active again.  I am praying that this turns out to be some sort of anomoly and the virus has not really become active again.  I guess the next few weeks will tell the tale.
 
Thanks for listening,

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2011 4:04 PM (GMT -7)   

Hep-back?, welcome to the forum.  I suggest you cut and paste your post to a new thread (copy, hit New Topic instead of Reply, and past into the new thread.)  In that way, you won't fall through the cracks.

You mentioned that you underwent interferon/ribavirin for 6 mos.  Even though you cleared the virus, it is usually recommended to taken the combo for the entire 48 weeks to prevent relapse.  However, it could be something else causing your liver enzymes to rise, if that is what has happened.  I hope you know something for sure soon.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland
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