need help

[racerx999]

Hi, I was diagnosed with HCV back in 1998 and probably had contracted 10 years earlier in 89. I initially went to Mayo clinic and was put on the Interferon and Ribavirin before it was approved for treatment. I had extreme side effects and after 16 weeks decided to discontinue the treatment. At the time I was healthy with no side effects from the HCV and believed the treatment would kill me long before the HCV did. I spent the last 12 years letting my famiy DR. monitor my alt,slt levels twice a year and have had zero problems. Due to a health insurance change I was forced to change doctors and my new GP sent me to a Hep Specialist. He informed me that my former GP wasnt doing right by me and the liver function tests dont give a picture of my liver condition. the hep Dr asked if I had been tested for viral load lately, which I hadnt. He did this and ordered a liver biopsy which will be taken in a few days. My dilemma, I was contacted by the hep Dr's office this week and told to show up tommorrow to start Pegylated Interferon and Ribavirin treatment. I was not happy to be informed this way and hadnt even been told what my viral load results were,which she told me ,366,000. I own and run two small businesses work usually 75 plus hours a week and have a wife and 5 kids at home. I will try the treatment if it is life or death but dont know if I am in that place.I have decided to not start the treatment tommorrow and wait until the liver biopsy results are in. If my liver damage hasnt progressed much in the last 12 years,I cant see the value of going on the treatment. I know what this stuff does to me and the least it could cost me is my businesses,the most it could cost is my life. I had terrible side effects back in 98. Depression and suicidal ideation being the worst. It turned me into a lifeless zombie and changed my entire personality. I never had depression before the treatment,but still struggle with it today.  What do you think? am I doing the right thing by questioning and waiting?

[James10500]

You are doing the right thing.  If you are G1, you might as well wait until 5/23 to see what's up with Telaprevir.  Also you know you are going to have major side effects mentally so if I were you I would start anti depressants a month before treatment.

Maybe the doc was less bed side mannerish because you know you have Hep C already ?
Don't let it compound the issue, the less stress the better.

[FlGuy]

You need to think of doctors like you do auto mechanics.  If you want caring, look to your spouse, your children and your bartender.

[FlGuy]

There are a few tests which the Doc should have run; Liver Panel (or liver function test), Genotype and Viral Load (the viral load and Geno test could be run as a combination (aka reflex).  Those tests with the biopsy give a more comeplete view of where you are.  In addition, there will be some pre-op (before the biopsy) tests - about a week before.

[racerx999]

Thanks for all the comments. I cant believe how uncaring some Doctors can be. I found out they wanted to have me start the treatment when the Pharmacy company called me for info. The Doctor didnt even call me or set an appt. to talk with me. It has all been very upsetting.

[FlGuy]

There will be new meds available soon (months maybe) which could reduce treatment time by half and improve results by 50%.  It's a good time to be careful about decisions.

[racerx999]

How does one know what geno they are? Will the Dr. Know with the blood test?

[carol411]

Which genotype are you?  It makes no sense to rush into treatment not knowing the condition of your liver with new drugs expected this summer that will up your chances of curing the disease unless you are geno 3.  I'd wait for the biopsy results to enable an informed decision.  If the results show stage 3 or greater damage to your liver then you can use the time between now and summer to get things in order so that you can treat.  The side effects may or may not be as bad as last time.  Unfortunately there is just no way to know.  But if there is advanced fibrosis and it is allowed to continue it will someday effect your ability to work (and live) so that needs to be considered.

[willbb]

  You might think about getting your new GP to refer you to a  another Hepa if possible .If you  indeed have Geno type1 and he was ready to rush you into tx.without the benefit of a biopsy result, it would be hard to imagine he is acting in your better interests.

Good luck  WILL

[FlGuy]

"What do you think? am I doing the right thing by questioning and waiting? "

You are absolutely correct in waiting until you have all the information, especially biopsy results - expecially if you are Genotype 1.

Doc #2 seems to be more on the ball than Doc #1 but if Doc #2 thinks that a viral load test, without the results of the biopsy reveals enough than Doc #2 is only slightly better than Doc #1.