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I'm going to see a the specialist for the first time on Friday. I'm trying to be as prepared as possible as far as the questions that I should ask him about my condition and my treatment. Here's what I have come up with:
1) Should I be vaccinated for Hep A and B?

It is now the standard of care to vaccinate against hepA and B. One liver disease is more than enough for anyone, and hepA has been been known to cause liver failure in combination with hepC.

2) Should I have a biopsy?

This is highly recommended but is, in some circles, still controversial. Many doctors and insurance companied try to avoid the cost of a biopsy. This is particularly so with doctors who treat everyone the same. The standard of care is that patients with stage 2 or 3 on biopsy are candidates for the interferons treatments. It is also the standard of care to assess patients for the liklihood of adverse events. Make sure you tell your physician about every medical issue you have, even if it seems to be irrelevant. It is unlikely to be irrelevant and could be very important.

Some doctors will treat anyone who tests positive by PCR, but this is not the recommendation of the NIH consensus panel. The decision to treat should be based on the biopsy report and enzyme levels.

Treatment has inherent risks and should only be undertaken after the risk vs benefit analysis falls on the side of the disease being worse than the treatment. Most patients will not progress to severe liver disease and will live with hepC and die of something else, treated or not. There are also limits to what treatment will do for you, even when you realize a sustained viral response.

3) What are my treatment options?

The first option is to discontinue alcohol, smoking, and live healthy lifestyle while monitoring to see if that will arrest any progression. The disease moves very slowly, thus offering this as an option for most people.

The key to this option is to have regular blood work and a biopsy every 3-5 years; and to work with your doctor and your support system to look at whether treatment is right for you and when it is the optimum time to schedule it.

There are choices with regard to interferon treatment as well. Infergen, IntronA (Rebetron, PegIntron)and now Roferon (Pegasys) are all currently FDA approved. Many doctors have a brand loyalty, but that doesn't necessarily mean you don't have a choice. Treatment is not an emergency, either, so you have the time to weigh all of your options, do further research and decide if this is right for you. Treatment is acommitment of up to ayear. In that year, you may suffer financial disadvantage, family relationships will be strained and you may not be able to parent small children adequately. If you are in a relationship, this decision should include your spouse and support network. Treatment is commitment of their time and energy, too, and they should know what they are getting into.

I find it of concern that the specialist is already discussing treatment without having met you. A one-size fits all approach is not the only way to go. Individualized treatment IS recommended by The NIH panel. Besides, you haven't even had a biopsy yet to know whether you even need treatment.

That report can be found on the NIH site under NIDDK.

4) Is there a certain diet I should follow to minimize the risks of hastening the progression of this disease?

Avoid alcohol, eat well, watch your iron intake (there are blood tests to determine whether this is high or aconcern.) Heart healthy is liver healthy, too. Dietary restriction come into play in stages approaching cirrhosis, but really do not apply to those without cirrhosis. Fasting and no meat diets are not recommended, either. Eat meat in moderation, even red meat.

I recommend pure foods. This means avoiding "fake" and chemical laden foods, prepared and instant "foods. Try to stay as close to three total ingredients or less.

One more thing. Watch your intake of ove the counter medications, including cold preparations, cough medicines, etc. Do not take excess tylenol by taking more than one preparation containing it.

I hope this helps.


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