Daughter newly diagnosed

[nerak124]

My 21 year old daughter was just diagnosed with Hepatitis C this past Monday. We have an appointment with a gastroentrologist/hepotologist in 2 weeks (the earliest we could get). As parents we are very worried. So far only a blood test was done and the doctor said he could feel that her liver was enlarged. She was in detox when diagnosed. (October 2009 she also spent a few days in a detox program and did not have this then) Can someone tell me what questions should we ask? What can we expect from this visit? Reading things online I see there is acute and chronic Hepatitis C. What is the difference? Are there any parent support forums?

[James10500]

Sorry about your daughters diagnosis.  Good news is it's curable, and young people seem to have an easier time on treatment. Check out the site below, and good luck to her.



http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf

[tashka]

If her liver is enlarged and there she was negative for HCV in 2009, she might be recently infected and in acute stage.

There is a good chance that she will fight it off on her own. About 20% of acutely infected people do. If not, she should start treatment immediately. The cure rate is very high for acute hepatitis C.

Your specialist will be able to help you with all of this. Good luck.

[nerak124]

Thank you so much for such speedy responses. I just completely read thru the link you sent me James. I will be printing it as well. Great info for any doctor appt.

[Bill1954]

Hi there,

Acute HCV is the initial six months of infection. During this period, roughly 15-20% of patients that have been exposed to the virus will clear it spontaneously with their own immune response. Those that don’t clear will continue on to chronic infection.

At 21 years of age, it’s unlikely she’s suffered any significant damage to date; HCV generally progresses rather slowly over years and decades of infection. There are of course exceptions to this, but the general rule is that it takes many years to reach end stage liver disease.

Ask her doctor to check her HCV RNA status; she may have only received an HCV antibody test so far, which indicates exposure but not active infection.

If she is positive for active RNA infection, the doctor will also test for HCV genotype; this is the particular ‘strain’ of the virus, and will help determine both the duration as well as response to future therapy. They may or may not suggest liver biopsy; this is sometimes dependent on other factors.

Good luck, and welcome to the discussion group-

Bill

[Bill1954]

The cost for HCV therapy (if one were to pay cash) begins at around > $USD 60,000/year. It can be much more if certain ‘rescue’ drugs to boost red or white blood cells are required. The HCV drugs alone are around $20,000/year; labs, procedures and office visits are also required.

We have a list of acronyms here on this page; it’s located in the lower right hand margin in a box entitled ‘most viewed health pages’. I’ll link it here; you’ll want to save the list to favorites or perhaps print it for future reference.

‘SVR’ = Sustained Viral Response’; this is used synonymously with the term cure. It is defined by completing the course of treatment with undetectable viral load; then retesting at six months post therapy; if there is still no viral load at that point, the virus is gone and will not return.

Take a peek at this, and see if it helps; I haven’t read it yet, but another member recently posted it:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf

--Bill

[Bill1954]

Wrong thread...

[nerak124]

We had our first Dr appt. This was just the yes you have HepC and now we have to do some tests appt. Dr. told my daughter to get the Hep A vaccine. We are now waiting to see what genotype she is and the sonogram results. The doctor said that we have to wait to get the genotype to determine treatment. Is she is a 1 treatment will start right away, but if she is a 2 or 3 treatment we have wait 6 months due to the fact that she doesn't have enough clean time and relpase is more likely in the first 6 months. Another 2 weeks of waiting for the test results..........

[Diane12855]

What kind of doctor told you that? All genotypes take interferon and ribavirin so why would he allow her to start treatment if she is type 1 and not the others? Type 1 is the hardest to cure. Sorry... I remember that you said you haven't seen the specialist yet... you can just forget what this other doctor told you... and you need for her to get a biopsy instead of a sonogram if you are going to find out how damaged her liver is.

Diane

[Dennisdrl1]

The issue regarding treatment revolves around her genotype and the degree of liver injury.  If she has type 2 or 3 a liver biopsy is not necessary as it has a successful response rate of over 80%.  If she has type 1 and the liver biopsy demonstrated mild injury then she could delay treatment until the release of Telapravir or Bocephavir as these appear to significantly increase the response rate of type 1 from around 40% to 75%.  It is critical that she remains drug and alcohol-free and is religiously compliant with therapy.  

[nerak124]

The doctor we saw is a gastroentrologist/hepatogolist. He said biopsy not necessary yet until we find out genotype but in the meantime a sonogram will give some news. Hopefully we can wait until these new drug treatments are available as we hear they are easier to handle. Thank you for your responses, very encouraging and helpful.

[Bill1954]

I’m not sure the statement:

“these new drug treatments are available as we hear they are easier to handle.”

is accurate. These new drugs will be used adjunctively with interferon/ribavirin and carry their own side effect and risk profile. Some patients may qualify for shorter treatment duration; this hasn’t been established yet.

Good luck-

Bill

[Dennisdrl1]

There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain.  However, the response rates are higher and would be worth a trial of the new meds.  Plus, more information will become available regarding treating the side effects

[spectda]

"There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain"

Yes the most common adverse effect of boceprevir is anemia, the most common adverse effect of telaprevir is rash. Which one of them has the severe anal pain side effect? I have not read that this was a problem with either of those drugs.

[spectda]

If your daughter didn't have hep c last year and has it now then it is highly unlikely that she will have sustained liver damage at least not from the hcv. It takes most people 20-40 years to sustain liver damage from hcv if they do not have other contributing issues such as long term alcohol abuse.

She probably doesn't need a biopsy even if she is genotype 1a or 1b.

Good luck with your daughter. I know this can be frightening, but the good news is that the odds of curing this disease are increasing rapidly with new drug development. Maybe she will be lucky and her body will fight the disease on her own if she has acute disease.

There are many people that join this forum for help supporting a family member that has hep c. I think you will find what you need here. A lot of intelligent, compassionate people who know a lot about hcv.

Take Care,
- Dave

[nygirl7]

Very confused about anal pain what does that have to do with any treatment drug?

[willbb]

It sounds like you are taking all the proper steps at this time....seeing a hepatologist,first and foremost as he/she will run the appropriate tests. The geno type at this juncture is most important as it will ascertain what further steps should be taken,if any at all at this time. The future looks bright for treatment and your daughter being young   is also a plus as it will most likely give her many options on when is the best time to treat,with a great chance of success.  Good luck.

To : Dennisdrl1...TX.sure can be a pain in the a..  however never really thought of it as a side effect.   :)

WILL

[lapis]

I think he's referring to the rectal pain which is caused by burning diarrhea.  Yuk, I know, but that is one of the potential side effects with Tela.

[Dennisdrl1]

Anal pain apparently can occur independently of diarrhea.  Biopsy may be of value in genotype 1 to assess degree of inflammation (grade) and fibrosis or scarring (stage). It is possible to have perfectly normal liver enzymes but still have cirrhosis.  Biopsy can provide information regarding prognosis, response to therapy and rule out other causes of liver disease.  Progression to cirrhosis can occur during a much shorter period of time than 20-40 years.  It can be affected by alcohol, obesity and other factors.  I believe it is Telaprevir that is associated with the anal symptoms but at this point I am not certain as to its frequency.

[willbb]

There may be more side effects with the addition of Telaprevir and Bocephovir: increased degree of anemia, skin rash and severe anal pain"
------------------------------------------------------------------------------------------------------------------
I would appreciate it if you would be good enough to post the study that states that either BOCE or TELA  results in severe anal pain....thx

WILL

[willbb]

I am finding it a real pain trying to find the study about the problem in the anal area......or something like that.

WILL

[Trish77]

Geez....now you're just being anal.  ;-P

[nygirl7]

Yeah but honestly nobody on here has ever heard of this side effect EVER before and I would think a lot of the people in here were amongst the first to be involved in the trials.  It doesn't sit right and I too would like to see this information in print to see how many study subjects this particular side that we never have heard of has happened to?

[GSDgirl]

Well???  The study?

[lapis]

I looked back at my papers from the tela study, and here is what is written as part of the consent:

The types of side effects seen during the earlier studies with telaprevir are very similar to the types of side effects seen in people who are taking PEG and RBV, without telaprevir.  Skin side effects (rashes and itching) were more common and more severe in people who took telaprevir with PEG and RBV.  Gastrointestinal side effects (nausea, vomiting, diarrhea, anal irritation) and anemia were more common in the people who took telaprevir with PEG and RBV.  

Since I personally experienced the anal irritation (lucky me!), I figured that's what he was talking about.  Hope this is helpful.  

Lapis