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Hepatitis C Community
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Avatar universal

Daughter newly diagnosed

My twenty year old daughter just got out of residential rehab for heroin (and cocaine, loves the speedball, apparently) addiction and has now been clean, with the help of Vivitrol injections, for 60 days.  I found out she was using heroin when she was 18 and life has been a big nightmare since then.  Last week she had a doctor's appointment and some blood work before they would give her the Vivitrol injection.  Yesterday she called me in tears to say she has hepatitis C.  I guess I was naive; it's so easy to buy insulin syringes I didn't think she had ever shared needles.  Her getting hepatitis or HIV from using IV drugs has crossed my mind many times, but again, I thought, thank god she has clean needles.  After all, I found bags of them in her room many times.  She says she "only shared like twice ever."

She is supposed to go back to the doctor (a physician's assistant, actually) on Monday for more blood tests.  I'm assuming so far she has just had a positive HCV antibody test and they need to find out what genotype and what the viral load is?

My questions are about how to find the best care for her.  We live in a community with good doctors and a good hospital but I wonder does she need a hepatologist right away?  For that we would need to drive about a hundred miles.  Of course we will take her where ever she needs to go to get the treatment most likely to make her well.  I guess I need to have a crash course in hepatitis C treatment and prognosis.  Thanks in advance for any and all knowledge and experience you all have.
6 Responses
1747881 tn?1546175878
"I'm assuming so far she has just had a positive HCV antibody test and they need to find out what genotype and what the viral load is?"

That would be my guess as well, however that doesn't mean she has a chronic HCV just yet, the future test will determine that.

Is it possible for someone to become infected with HCV and then spontaneously clear the infection?

Yes. Approximately 15%–25% of persons clear the virus from their bodies without treatment and do not develop chronic infection; the reasons for this are not well known.

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#c5

A reactive antibody test does not necessarily mean a person still has Hepatitis C. Once people have been infected, they will always have antibodies in their blood. This is true if even if they have cleared the Hepatitis C virus. A reactive antibody test requires an additional, follow-up test to determine if a person is currently infected with Hepatitis C.

http://www.cdc.gov/knowmorehepatitis/LearnMore.htm
683231 tn?1467323017
Hi Sage

Sorry to hear about your daughter. If her liver is still in good shape which can be determined by a liver biposy if you can find a gastroenterologist who is familiar in treating hepatitis c especially they would need to be familiar with the new treatments approved in the last year and coming out soon.

The good news is there has never been a better time to be treated for hepatitis c. The newest treatments are generally more tolerable, of shorter duration and most importantly much more effective than what was available just 1 year ago

Read up on Solvaldi and soon to be released Sovaldi Ledipasvir which is a single pill once a day maybe taken for 12 weeks and cured we dont know the duration as that one has yet to be approved

Good luck to you both
Lynn
Avatar universal
Hi and welcome to the forum. If it does turn out that your daughter does have the Hep C virus there is no reason to freak out. She is only 20 and from what you said it looks as if she does have it then it's only been in the last couple of years. This virus for the most part takes many years before much damage is done. I would be surprised if they even wanted a biopsy done.

I see no reason to go out of town to see a Hepatologist if you have any local GI doctor that has experience  treating this. A hepatologist doctor is only really needed if one has much liver damage and again at her age and amount of time it's really unlikely she does.

Hang in there and wishing you both the very best.
Avatar universal
Hi and Welcome
So sorry to meet under these existing circumstances but your on the right track to help your daughter.  As mentioned at this point it hasn't been confirmed that Hep C is present.  Lets hope for the best.
Your daughter is still so young and fortunately its doubtful if she has any liver issues from the virus, if indeed it comes back positive.  We can now cure the virus, and treatment is less toxic then it has been in the past.  I would also agree with others that a good gastroenterologist would be able to treat without issues or stress.
You sound like a very caring mom, and I empathize with your situation.  I do believe the best approach is to find out exactly what her geno type and
viral load and proceed from there.
Please know when you get that info we can guide you thru the process and help your daughter with treatment suggestions and emotional support.
Take care and hang in there
....Kim

Avatar universal
Thank you all for the words of encouragement.  I would love to think she won't turn out to have the virus, however I just read that 50-60% of injection drug users have hep c, and a year ago she had negative antibody tests, so......

She seems to know a fair amount about the disease and had several friends (fellow heroin addicts) who have tested positive. None of them are being treated yet. I guess doctors want you to have a year of sobriety before starting treatment, I guess to increase the chance that you will be compliant with treatment. Is it harmful to start meds and stop them early?

We will see how things go on Monday with more tests. I feel better knowing this community exists. Thank you again for  these kind words.
1961140 tn?1450738712
Hello, Sorry to hear of your daughter's Dx. The hope you can grab onto is amazing though, compared to what was available to us who contracted this pestilent disease 25+ years ago. By all means, she needs to be under the care of a Board Certified Hepatologist. If your closest hospital is big enough, you should find one or more MDs who make treating HCV sort of a specialty. She needs to be Genotyped, (most likely 1 or 1a, but in today's world it could be anything.) That is very important because some tx seem more effective against different GTs. This Hepatologist will also order a baseline HCV RNA via PCR Quantitation, i.e. a "viral load" test. Has she been through the acute phase of the infection-- months of feeling like you have a bad flu, jaundice, lethargy, etc...? Some have a very mild acute phase, mine hit me like a train. Scared me straight, though. I guess the next item up for consideration is making sure she stays clean. Any street drugs like meth or smack are so unbelievably toxic to the liver, seeing as they are brewed up in unsanitary, clandestine laboratories using things like lye, ehter, red phosphrous, kerosene, gasoline (these last two in cocaine.) Plus other caustic OTC chemicals like muriatic acid (that cleans stains on concrete.) and  other poisonous adulterants are added to cut the drugs with. I don't mean to alarm you, just enforce how important it is for her to stay away from all street drugs, whether injected, smoked or snorted.Her HCV MD will be able to tell you if her diabetes is going to complicate matters. After she has been clean for a while, then discuss with your HCV MD the best course of treatment, and look into the many financial assistance programs offered by the major drug companies. I am lucky enough to be in a clinical trial of a new Merck drug, a newer, distant cousin of the Sovaldi/Osylio combination therapy, but combined in 1 pill. Clinical trials, which would be a burden because of travel involved, has the MAJOR advantage of costing you absolutely nothing. In fact, most pay $50 per visit. There are a lot of pre-trial acceptance hoops to jump through, but if you are lucky enough to find an open trial, look for the following: A Phase III, (almost ready to submit to the FDA for release to the open market.) trial, The drugs should be a 1 or 2 pill max a day of the new breed of DAAs' ( direct acting antivirals), and "supercharged" versions of Ribavirin,(RBV) a protease inhibitor. I can forward the clinical trial numerical/alphabetical designations of these investigational drugs if you like, just please feel free to contact me. When 2016 is not yet over, I fully expect there to be at least 3-4 versions, by different drug makers, of this "new generation" HCV oral tx (treatments.) They will most likely be 1 pill a day, 12 week, or even less duration therapy meds, with a SVR (Sustained Viral Response, that is total eradication of the HCV), w/ a success rate of 99%+, regardless of GT. Also, if my trial drugs are any indication, very minor side effects. That is why I am so optomistic for your daughter, she can have a full life ahead of her, with hopefully only her diabetes as a source of concern. They can not, as yet, cure that, but they are very close to eradicating this scourge of an infection we call HCV. Best of luck to you, and any questions you may have I will do my best to help. I am no MD, but have found a  few very useful research sites on the Net. You can search, with geographical parameters, what the phase the trial is in, etc. by going to: www.clinicaltrials.gov. Best Wishes, mac   P.S. As far as a biopsy goes, this early in the course of the infection, I'm wondering about the risk/benefit ratio. My trial hospital just acquired a brand new " FibroScan" machine. This will soon elimnate the need for almost every patient of the invasive biopsy sampling,IMHO. To the patient, it is as easy as getting an ultrasound exam. No needles, no 5 hour wait to make sure you are not bleeding, etc... This is truly the future unfolding before us. HCV is big business... w/ 3.2 million Americans alone knowing they have it. mac790  
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