Treating hepatitis c

My son who has downs syndrome and suffered and was successfully treated for AML at the age of 3  has been carrying hepatitis c  presumably as a result of the blood that he received then. It was only discovered about 5 years ago because till then no doctor bothered to clarify his high liver function tests. The doctors are pressuring me to treat the hepatitis but I am very much afraid of side effects of the treatment. In the meantime he is being treated using herbal medicine and anything else that I find and seems useful to me. His liver function test go up and down but are now, since I started the herbs, not far from normal. I have read up on the treatment and it is quite frightening. I would like to know all the possible side effects and repurcussions of them and how can I know if he is any danger by not being treated with the conventional drugs if he is getting other treatment. What is the chance of the treatment being successful? If his liver function tests vacilate between normal and slightly above and his viral levels drop each time that he is tested, what does that mean as far as the danger that he may be in? May I add that in my experience doctors have a tendency to scare patients into undergoing treatment, and tend to underplay or even "forget" to mention side effects of treatments. So please, I ask for a very honest answer including referrals to relevant literature.



This discussion is related to SGOT/SGPT values for HCV infection.

[HCA]

The key factor is his genotype.
The chances of success are upto 80% for geno 2 and 3,and about 45% for geno 1.
A better treatment for geno 1 will be out in two years.
If the doctors are 'pressing' for you to have him treated,then it's because they think he needs it.
You need to know what level of liver damage he has-the enzymes don't tell you this.
Most people have a biopsy to determine how urgent it is to treat.
Any competent hepatologist will know about the side effects and will not play them down.
If you can fill in any of the info I have mentioned plus his age and lenghth of infection it will be easier to have a view.
There is no scientific evidence of any herbal or altrnative medicine altering the natural history and progression of Hepatitis C.

[JennyPenny]

I mostly agree with what HCA has told you. Also, herbasl treatments and supplements can be dangerous for a hepatitis patient. The quality control of these products are not very good and sick livers do not do as well with herbals as someone who has a normal liver.

Fluctuating liver enzymes and even viral loads are a hallmark of hepatitis C and do not mean someone is getting better. If he is genotype 1 he has a 45-50% chance of cure and if he is genotype 2 or 3, he has about a 65% chance of cure. You need to ask your questions to a hep doc.

[Bill1954]

I think an emphasis needs to be made on one point; liver enzymes and hepatic fibrosis do not necessarily correlate; it’s possible to progress to significant liver disease and have normal or near normal liver enzymes (ALT/AST).

I do agree that if treatment is going to be postponed a live biopsy is the best way to determine urgency of treatment.

The current combination of interferon and ribavirin can have differing effects on patients. Personally I managed the treatment relatively well, both from a subjective and hematological standpoint. My biggest single complaint was fatigue, but I did not experience fevers, aches, pains, etc. Granted, it still wasn’t fun, but eminently doable.

There are additional drugs that may b available soon; these will be used in conjunction with the current meds, but may reduce the time needed for treatment, as well as increase the efficacy for genotype I patients. Discuss the availability of the trial drugs ‘Telaprevir’ and ‘Boceprevir’ with the doctor next visit.

I would discuss liver biopsy for my son, and base any treatment decisions on the results.

If you like, read through the following website for more info on HCV:

http://janis7hepc.com/

Open ‘newly diagnosed’ near the top of the page, or click on ‘other HCV information’, located in the right hand margin.

Good luck to you and your family—

Bill