I hate the thought that I even need to address this but more and more I am hearing from Hep C patients that their doctors are clueless. It appears that with this virus the Hep C patient needs to be their own advocate. The more you know about your virus and the treatments available the easier it will be to spot the gaping holes in a doctors Hep C knowledge base.
It is imperative that you have complete trust in your doctor. It is with his advice and guidance that you will find out if you need to treat for this virus and if you do, he needs to help you get thru it. There is nothing wrong with doctor shopping. You wouldn't buy clothes that don't fit you so there is no reason to use a doctor who you just don't gel with. It's a fit. Just like clothes. Personally, I have fired a few doctors over the years. It took me a few to get to the doctor that finally treated me for my Hep C.
If your doctor is going to start you on treatment for your Hepatitis C, you need to make sure that he understands the treatment. Currently, with the two new protease inhibitors that have been added to the Standard of Care for patients that are Genotype 1, it appears that some doctors are confused as to how the treatment time frame and standards go. The doctor may come across like he knows what he is talking about but I have seen it time and time again where they are not following the FDA approved protocol. If you understand the treatment guidelines (they aren't that difficult to understand) you will catch it if your doctor is telling you something different.
On Incivek: If you are treatment naive and test undetectable at weeks 4, 8 and 12, your treatment will last for 24 weeks. If you do not test at undetectable levels at any of these markers, your treatment will last 48 weeks.
If your viral load has not dropped below 1,000 units by week 4, all treatment is to stop.
If you are not undetectable at week 12, all treatment needs to stop. If it hasn't worked by now, it's not going to work.
You take Incivek for 12 weeks and you start the Incivek on the same day you start the Ribavirin and Peg-Interferon.
On Victrelis: There is a 4 week "lead in" with this drug. Meaning for the first 4 weeks you take the Ribavirin and the Interferon alone. At the start of week 5, you add the Victrelis.
The minimum time frame with this treatment is 28 weeks. You take Victrelis for 24 weeks.
These are the main areas where there seem to be confusion. If you understand what the treatment schedule is like, you are ahead of the game.
There are several types of doctors who are administering Hep C treatment. The doctor at the top of the food chain, the one with the most knowledge, is a Hepatologist. If you can get to a Hepatologist, this should be your first choice. You more than likely will not run into problems with a Hepatologist. They are on top of their game.
Infectious Disease Specialists are a great go to for Hep C if there isn't a Hepatologist in your area. Gastroenterologists also treat patients for Hep C. Here is where you need to make sure you know your stuff. Some of these guys are amazing and some leave a lot to be desired. Seeing as Hepatologists are harder to come by, many people are treating with a Gastro.
Finally, your GP or Internist or PCP doctor comes into play. He is probably the one that diagnosed you. 90 percent of most of them will tell you that they are not qualified to treat Hep C. They usually stay in the background and let the doctor who is qualified to get you thru treatment lead the way.
Almost everyone comes back from their visit to the doctor saying "I wish I had remembered to ask about..." So here a few prompts for you. Don't expect all of these answers at once as some depend on test results. Make sure when you make your appointment you let the person making the appointment know that you have a lot of questions so they can schedule you enough time with the doctor. If you tell them in advance you need extra time, they will schedule that time for you and you won't feel rushed by the doctor.
- What is my Genotype?
- What is my viral load?
- Should I be vaccinated against Hepatitis A and B?
- Will you be doing a biopsy?
- Do I need to treat?
- Do you advise treatment or long term monitoring?
- What changes should I make in my life?
- How should I prepare for treatment?
- Do I have any other conditions that will complicate therapy?
- Is there enough damage to my liver to be concerned about cancer?
- How long will my treatment last?
- How often will I need to be seen?
- What tests do I need to take? Will these tests be repeated, if so, how often?
- How do I find out my test results? Will you call me or do I call you or are they e-mailed to me?
- What side effects can I expect from treatment?What symptoms will I have if my liver starts to get worse?
- What approach do you take if I become anemic on treatment?
- Will you give me a transfusion or do you use rescue drugs? ** Caution** If the doctors response is that he will stop treatment if you become anemic, find another doctor. Anemia is a normal side effect of treatment. Your doctor needs to be prepared to treat it.
- Whom do I contact about any side effects I am having? Do I call you or do you have a nurse that I should speak with?
- Are any of the medications I am currently on not compatible with treatment drugs?
- Do you have any suggestions on how to make treatment easier?
That should get you started. It should also give you a clue as to how knowledgeable your doctor is about Hep C treatment.