Hep C Discussion Forum

Hi all,

I did a post on this a year ago, but with the Trials, it seems appropriate to mention it again. I realise that many patients don't have the luxury of being able to choose their Hepatologist, but it is possible to be satisfied that you're going to get the proper level of care.

For non-Trialists, you should be happy with your work-up before starting any Rx.  Obvious things are Genotype, Viral Load, FBC and full Biochemistry including all the liver enzymes. You should ask whether you can get copies of the results to keep on file- they are your results and you are entitled to a copy. I would want Thyroid Function Tests as well, and a serum Vitamin D and Fasting glucose and Insulin test.  The Interleukin 28B gene test is probably useful still, but it's not the big deal it used to be.  I do think an assessment of liver damage should be performed.  Whether this is by biopsy ( the best), FibroScan or a FibroSure (or other similar test), you really need to know where you're starting from.  I would want to know my treatment options, and whether treatment can be delayed for a couple of years. I would want to know my likelihood of SVR, when Viral Load tests are performed and how often FBC and E/LFT's will be done. I would ask about likely length of Rx, what are the Stopping Rules and what are my options if I don't achieve SVR. I would ask about likely side effects and how they will be treated.

All these questions are perfectly reasonable, and if you are not happy with the answers or the questions are dismissed with scorn, I would look for another Hepatologist. This is important Rx and it pays to get it right the first time.

Trialists are in a different situation. The Trial Protocol will set out the work up, treatment and testing. It is worth asking about re-treatment if there is breakthrough or relapse. I would also want to know how often and when I would get my results.  From what I've read in posts so far, some of these Trial Co-ordinators don't have a clue.  I have already posted that cirrhotics should be careful not to get on a Trial that is testing a short Rx duration. Cirrhotics should be particularly careful about re-treatment options, as they are the ones that will need re-treatment sooner.

Don't be put off by officious doctors!  HCV is not something to play around with.  Be informed, and be firm in your demands for the best possible Rx and care.