I don't understand any of it....

[justnotfair]

My father was diagnosed with Hepatitis C about a year ago.  He's been in and out of the hospital for transfusions and is now on all kinds of medication.   He thinks that he shouldn't worry us with any bad news, so he really doesn't tell us much about his visits and whatnot.  I know that he has also been diagnosed with cyroglobinemia and now something with his thyroid.  

The medication he is on is Epogen 40,000, Neupogen singleject 480 mg and also ribavirin.  That is all I know of.  Can someone please just help me to understand what these medicines are supposed to do for him.  I feel so lost in all of this and have no where else to go for some understanding?

Thank you.

[Kaykay14]

Hi, sorry to hear about your dad and it would be good if you just ask him to explain everything to you.  I did with my family and friends, including coworkers.  It really helped me get throught the treatment and kept my spirits high.  He may not want to talk about it because he may break down.  Let him know that it will be okay to breakdown and that you are only there to help him through this.  It's hard to get through the medication, but if your spirits are high and the people around you are supportive, he will make it.  Make sure when he doesn't eat right or exercise that you keep on him to do so.  That's the kind of support I recieved from my family and friends and it was great.  I'm not sure about the Epogen and Neupogen, but I know the Ribavirin is used to keep the good cells from being destoyed by the bads cells that have the virus.  My doctor told me to think of it this way, you have two different medications and when they enter into your body they go to war fighting one another, and we hope that the good cells overturn the bad ones :)  I hope this helps.  K

[desrt]

If your father is treating his hepatitis C, he wouldn't be taking ribavirin without also taking interferon. Interferon and ribavirin work together to clear the hepatitis. Neupogen treats low white blood cell count caused by interferon, epogen treats low red blood cell count caused by ribavirin.

[mkp13]

No, it's not fair.  I'm sorry your dad was unlucky.

The standard treatment for HepC these days is two drugs: ribavirin and interferon.  Interferon is a once-a-week injection.  Ribavirin is little pills taken twice daily.  Interferon can give flu-like symptoms as side-effects, though for most of us those aren't too bad after the first few weeks.  Ribavirin has a variety of side-effects, including anemia (low red-blood-cell count). One of these two (I'm not sure which) sometimes also causes low white-blood-cell count.  Neupogen helps the body increase white blood cell count.  Epogen helps the body produce more red blood cells.

Low white blood cell count makes a person more susceptible to colds and diseases, which is why they want to keep the count close to normal.  Low red blood cell count makes you feel weak and short of breath.  How low the count is determines how weak you get.  If it gets too low, they give transfusions to increase the red blood cell count.

Neupogen and Epogen are called "rescue drugs" because they allow a person to continue treatment with ribavirin and interferon when otherwise they might not be able to.  The transfusions were probably needed because it takes Epogen a little while to fix things.  Once the Epogen takes effect (several weeks), he shouldn't need any more transfusions.  Hopefully.

As for the two treatment drugs: As I understand it (others can correct me if I'm wrong) ribavirin hinders the replication process of the virus, so your body produces fewer and fewer copies and more of them are unable to reproduce.  Interferon revs up your immune system so your own body fights the virus more effectively.  The standard treatment is these two drugs in combination for either 24 or 48 weeks, depending on the strain of the virus.

Thyroid problems are one of the not-all-that-common side-effects of interferon treatment.  Usually they're treatable with medications.  Also, they usually go away when treatment ends.  I'm not sure what cyroglobinemia is, so somebody else will need to comment on that.

You don't say how old you, but regardless of the answer, if you tell your dad that you're worried and that you'd feel a lot better if you knew what was going on, maybe he'll explain it to you.  In particular, you might like to know how many weeks he's been in treatment and when it's expected to be over.  In the meantime, if you google each of the terms you don't know (ribavirin, interferon, epogen, neupogen, etc.), you'll find articles on them and can learn more.  Some of the articles are hard to read, but the drug sites have fairly good patient explanation pages that talk about what the drug is, what it's supposed to do and what side-effects to expect.  Wikipedia is also quite helpful.

Best wishes to you and your dad.

[copyman]

tell him to visit us here. we can help offering support and knowledge.

[Isobella]

I agree that your father is probably also taking the interferon along with the ribavirin.  Interferon is an injection that he would take once a week, so that may be why you were not aware of it.

Without having much information to go on, from the outside, it seems like your father is doing what he needs to do to rid himself of the HCV.  And the fact that his doctor's have him on neupogen and epogen to combat the low white blood cell count and the anemia makes it sound like they are staying on top of his situation.

I found it very hard to discuss this with my daughter when I was first diagnosed.  It was something I wanted to keep away from my loved ones and just deal with on my own.  Sometimes illness can be even more difficult for fathers to discuss because in our society it is their "job" to take care of their families.  So when they are dealing with an illness, they still want to protect you and care for you.  He may see this treatment as a job that he is just trying to get through.

I think when he realizes that you are concerned enough and obvoiusly mature enough to have researched and learned on your own some aspects of what he is going through, he will be able to open up and share more.  Just let him know you want to help.

I know that's not technical medical information, but I just wanted to give you a little mom insight because you also said you felt lost and needed some understanding....and trust me---many of us here can understand what you are dealing with now.  

You dad is lucky to have such a loving and concerned kid =)  

Hang in there,

Isobella