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775302 tn?1253104105

Should I be more Proactive?

Hello Eveyone,

I'll try to make this quick. I have Hep C. was diagnosed in the late 80's when it was called Non A-B Hep. anyway, I was in on one of the first full Year Interf. treatment and it was He!! Since then I've tried 2 more times but was unable to get through the full 12 months due to side effects causing an unbearable quality of life. I have Psoriasis and Psoriatic Arthrits also and the treatment for Hep C causes the autoimmune to go totally out of control. The Hep C I am used to with it's lovely fatigue and Flu like aches and pains. I have my blood work drawn regulary and all my doctors are aware of it but when I go on sites like this and I read people spouting off numbers and levels and genomes and whatever else I feel like I'm in the wrong place. I don't know any of my current numbers all I know is my Gastroenterologist says that while my levels are high, they are not cause for concern at this time since I'm a non responder.

My question is this, Should I be obbsessing over my numbers and memorizing all my levels while I am not currently undergoing treatment for the disease. It is enough to just be aware and have doctors following my numbers? I thought I trusted them but now I don't know if maybe I'm taking a too passive a role in my health.

I know I'd rather live 10 years less at a higher quality of life then 5 years more with a cruddy quality of life. I hope this doesn't offend anyone who takes this more seriously and I'm not saying I don't take what I have seriously I just don't deal with it right now because I'm focusing on treating the autoimmune issues, ( which is so hard cause my liver is so messed up LOL )


4 Responses
Avatar universal
I don't think you should obsess about your numbers though I did when I was treating.
I do, however, think you should seek a hepatologist or an experienced gastroenterologist and find out what condition your liver is in. Really, viral load means nothing except insofar as treatment response is concerned. Some people with low viral loads have significant damage while those with high viral loads can have little damage. Liver enzymes - ALT, AST and Bilirubin can shed more light on liver health but they aren't necessarily reliable. The gold standard for ascertaining liver health is a liver biopsy which is usually a relatively easy procedure to tolerate. There are other non-invasive tests that can be very accurate in diagnosing some degrees of liver damage - Fibrospect and Fibrosure come to mind.
I understand how an autoimmune disorder can complicate treatment and make it far more difficult to tolerate. The new drugs on the horizon can shorten treatment duration and dramatically increase efficacy. One or more of these new drugs should be available within 2 years. These drugs will probably still need to be taken with interferon and ribavirin so you won't be able to avoid those drugs but your exposure may be significantly shortened. If your liver is not in bad shape you can probably wait for these drugs. But you really should see an expert who can guide you and advise you and present your options.
Good luck,
Avatar universal
You don't need to obsess about your numbers (although some of us get a real kick out of doing so!)
The only thing that matters is how much liver damage you have and whether it is getting worse.
The main diagnostics are biopsy and ultrasound.
You really want to avoid advanced liver disease if it's coming your way,and the new treatments may help you.
The simplest scale of disease is the fibrosis score,stages 0,1,2,3,4.
You need to know which of these you have-you will have one of them-get your doctor to enlighten you.
Don't let your doctor hang you out to dry as a 'non responder' as though that's the end of the story!!!!!!!!!
775302 tn?1253104105
Thank you both so much for the response, I've had 2 biopsy's in the past 12 years once was within three years and the damage to my liver was minimal. I found out I had Hep C when I was quite young so I don't drink and I try to avoid acetaminiphen and other harsh liver drugs to try to keep things under control as much as I can. It was just that the treatment was worse then the disease ya know? I have to work 40+ hours a week, it is that simple. Otherwise my daughter won't have the life I need for her to have. YOu are all inspirational to me and I'm so glad so many of you have found what you needed in treatment. I for one, just can't handle the side effects with my autoimmune problems and Psoriatic Arthritis. I wish you all the best though.
Avatar universal
Hi babs, I think you know already my feelings on the whole pro active approach to looking after your health if you are a hepper. And for anyone who don't know I think none of us do enough. But that's old news. Babs the whole viral load think as far as I've been able to find out means little or nothing except when treating, it appears to make no difference to your liver health what so ever. Remember the virus it's self doesn't actually harm your liver rather your bodies immune response trying to kill the virus does. And as your body has only a limited response to hcv hence the whole chronic infection thing, your body doesn't appear to have a stronger immune defence to  a higher viral load. So there it shouldn't affect the liver any differently from if you have a low load. It is advisable to keep an eye on your liver enzymes as they will give an idea of how well your liver is functioning, they can fluctuate but if they start to rise and don't fall then you should definitely know about it. Hope this helps a bit, abd hope I didn't ramble to much
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