some general question from a newb

[KPK85]

My brother was recently diagnosed with Hepatitis C. The Hepatitis C RNA test came back yesterday and was positive, so he will definitely require treatment. We still do not know what genotype it is.

I know nothing about this, but my brother is my best friend so I will see him through this. Basically, I want to know what to expect. The doctor we met with yesterday was not very helpful at all, as he was not a liver expert. He basically told as that my brother will need weekly injections, and that they might give him some flu-like symptoms, but that some patients hardly experience any discomfort from the meds. He said he would refer him to a liver specialist and make an appointment ASAP, and that was it.

My questions:
1) What are the odds that my brother will eventually clear the virus? I know this depends on genotype, but realistically, what are the chances that some day my brother won't have Hep C? I always thought that Hep C was a lifelong illness and there was no cure.
2) What can I/he expect as far as side effects from the injections? I've been getting conflicting info on this. The doc says "flu-like symptoms" and possibly none at all. But then I read on the internet these absolute horror stories about treatment, and about hair falling out, etc. What is realistic to expect?
3) Is there anything I can do to support him besides just being around?

Thanks

[KPK85]

Thanks very much for the kind words and support everyone. I'm sure I'll be back here many times as he starts treatment. It's good to know a place like this exists.

Ken

[Isobella]

Welcome to the Forum, sorry for the circumstances,but this is a great place to learn.  

What you learn first is that HCV is a disease of "hurry up and wait"

As patients we are hit pretty hard when we get diagnosed, scared and looking for answers.  Seems like we are constantly waiting for doc appts, lab results, biopsy results, ect. We want to hurry up, but someone is constantly making us wait.

You've gotten some good advice above, I would just like to add that your brother should use this waiting time to begin a healthy diet, start excercising, if he doesn't do both already and educate himself as much as possible about this condition.  

That way when the results do come in, he will have a better idea of which direction he wants to head.  And he'll be healthier when he does start tx.

For the record, I'm geno 1a and just finished 48 weeks of a Teleprevir study.  I'm about 10 weeks post.  I had an easier time than most, and so far I am still UND. I was itchy, scratchy, tired and kinda cranky.  Didn't lose any weight and didn't really lose any hair either, just got pale and pasty looking.  It was doable.......not fun, but I did ok.

He's lucky to have you. Good luck to you both.  Please keep us posted,

Isobella

[charm27]

Welcome to the forum. There is always hope for HCV. Yes genotype 1a and 1b are more difficult, however many people do get cured sometimes they have to treat more than once sometimes not. This illness has MANY factors that we all must deal with.
If we respond to treatment and how long it takes until the virus becomes undetectable while we are on treatment is a great clue as to what our chances will be.

I am1A and treated for 55 weeks and 9 months after tx I am SVR!
Please know there is ALWAYS hope!
Your in a good place for info many people here are VERY informative and will always give you support and answers if they can.
Again best of luck to your brother-glad he is going for tx.

Best wishes

Charm

[Bill1954]

JennyPenny gave you an excellent overview above; I’ll tag on a couple of other thoughts.

You will hear the term SVR referenced frequently in here; it stands for Sustained Viral Response, and is synonymous with ‘cure’. It is defined by successfully completing the treatment with undetectable levels of virus in the blood; then continuing for six months without meds, and continuing to remain undetectable for the disease. Once this has been accomplished, the patient will be cured for all intents and purposes.

Here are some web pages to review; make sure you bookmark these for future reference:

http://janis7hepc.com/
Be sure to read the section ‘newly diagnosed’ near the top of the page, as well as any item of interest in ‘other HCV information’, located in the right hand side of the page.

Another resource is ‘common HCV acronyms’; this is also available at the bottom right of this page under “most viewed health pages”:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Reading through this and having it handy will help make sense of the alphabet soup of language used in this forum.

Take care—

Bill

[JennyPenny]

Your brother is a lucky guy to have you. I hope he appreciates this. I'll try to answer some of your questions but remember that all of us are individuals and we all react differently to the virus as well as the treatment.

The side effects that people get are on a continuum. There are a few people who have virtually no side effects and even feel better than before treatment. At the other end of the spectrum, there are some people who are so sick that they stop treatment and decide to live with the virus. The majority of us fall somewhere between the two ends. Many side effects can be treated if you tell your physician about them. They range from low grade fevers, headache, stomach upset, muscle and joint pain, depression, insomnia, low blood counts (including anemia), and hair loss which is more like hair thinning than actual loss of hair like patients on chemo for cancer. Some people hve anger issues which you will see if you hang around the message boards for a while. Some doctors start the patients on anti-depressants a few weeks before treatment so the depression doesn't get too bad. There have been a few patients who have lost their lives through suicide because of the drugs but that is exceedingly rare. And with a brother who is so considerate and I'm sure watchful, I doubt very much that you would have to worry about that. Again it is rare. Another caution for you is that the people who breeze through treatment are usually not on message boards, they are out doing their lives so I think that a lot of the horror stories you hear happen less often than it seems to everyone reading the posts.

If your borther is genotype 1a or 1b, he will have about a 45-50% chance of getting rid of the virus. If he is a genotype 2 or 3, he will have about an 80-85% chance, If he is that rare geno 4 in the USA, he will have about a 60% chance of clearing the virus. There should be some new drugs coming out in 2011 that will add a protease imhibitor to the standard of care (interferon and ribavirin) and thqat will raise his chances so he may want to consider waiting for those drugs. Tht would depend on how much liver damage he has and if he and his physician feel it is prudent to wait. Treating hep C is rarely an emergency because it progresses so slowly and in some people it does not progress at all. Unfortunately it is very difficult to figure out who will progress and who will not. If a person can pinpoint the time he got the virus and look at the amount of liver scarring (fibrosis) he has in the present, he can get some idea. For example, if a person's only risk factor was a blood transfusion or IV drug use in 1970 and his biopsy shows stage 0 or 1 in 2009, he can safely assume he can wait to treat if he treats at all.

As far as what you can do to support him....I think you are already doing the most important thing and that is being there to help him through and letting him know you care. I don't know his life situation but if he lives alone you can give him help with food shopping, cleaning and cooking. For many of us fatigue and lack of stamina was the hardest part of treatment.

I wish your brother an easy time of  it. I am sure you and he will get lots of support here.

Susie