am i being stupid?

[jimmy134]

About 2+ yr's ago I was informed that I had hep c 1b and was told it was untreatable but doctor advised treatment any way and i turned it down. I was originaly diagnosed with hep c 2b in 1998 with scarring of the liver. Was it crazy to turn down treatment?

[Mary4now]

that is it is doable for most people.  

I have been off the meds for 6 days and today I'm feeling a little weird, tired, dry mouth, just off, but the doc says it takes at least a month to feel better.

Go for it

[Mary4now]

because you have 2 genotypes, you may want to consider the new drugs, and that would be available through the studies,  you may want to see where you are with your liver health at this point to see if you could wait and in the mean time take extra special care of your health, then go to a research hospital and sign up for the study that comes your way that fits your situation.

i did that and 2 years later they had a study that fit my situation.

best of luck,,,,, I'll tell you its GREAT being on the other end of this disease.   really, its worth it, doesnt feel like it during but it is doable.

Mary

[jimmy134]

thank you for all of your input. i wish i would have known about this site sooner. i am going to bite the bullet and set aside my fears and what if's and get treatment.

[can-do-man]

As Trish states, the drug companies all have Asst. programs that will cover the cost of their drugs. You say you also have medicare so then you know medicare covers in full ALL labs (no charge at all to you) and also cover 80% of what they allow a doctor to charge. Say if a doctor charges 200.00 but medicare only allows them to charge 140.00, medicare will pay 80% of the 140.00 which is 112.00 and you pay the balance. 140.00 - 112.00 = 28.00 dollars. That would be your total cost. This is all under part B.

This would also be the same for biopsys, ect.

Good luck,
cando

[Mary4now]

Good luck with this Jimmy, I hope you find a way to get the meds.  Some of the research hospitals might be able to help you, and the pharm companies,,,,,,,,
Can you get into a study?  I think they are starting a study next year using only the PI's
are you well enough to get accepted into a study?  Check it out

[Trish77]

A good question to ask here as I'm sure there have been others in the same boat or know people who have been. The drug companies all seem to have compassionate care programs that will cover up to 100% of the drugs, but then there are still the doctor appointments and lab tests. Aside from that, there are clinical trials where the cost of everything is covered - which would mean the cost of the biopsy also, I think, but I'm not sure.   I'm Canadian, so I can't speak to your medical system and how it works.  I hope others will chime in.

Do you actually have genotype 1 or 2 - or both?  You mention 1b on an earlier diagnosis and 2b on a later diagnosis.  

[jimmy134]

the biggest thing that is keeping from doing anything about it is the fear of the cost.  Back in 98 I did about 2 mos of treatment and lost my insurance and i couldn't continue because of the cost. I'm disabled now and i don't know if medicare will cover it.

[Trish77]

Never mind if that was stupid or not, this is today and you have to do what is smart TODAY.  What would be smart would be to find out what your situation is and find out what you can do about it.  Hep C is NOT untreatable....but will be if you let it go for too long until your liver deteriorates to the point where you have very few options left.  There are some very successful treatments available now and many of us have treated successfully and no longer have Hep C.  There are others who find out they have time and options and then have some luxury of choice.  There are others who have advanced liver disease and have various challenges as a result.  Please.... find a good hepatologist who is experienced at treating Hep C, find out where you are at and what you CAN do about it...and do it.  Ask any questions you need to here along the way.  Good luck with this.

Trish

Trish

[jimmy134]

my biopsy showed scaring in 1998

[orphanedhawk]

You aren't stupid because you did what you felt to do at that time.
What you haven't said is what condition your liver is in.

I have a friend who has had hep C for many years and her liver hasn't had one bit of damage. She is not stupid because she chooses not to take dangerous meds with side effects when she has a healthy liver.
In my opinion, the health of your liver should be the primary deciding factor of whether or not you do the treatment.

[FlGuy]

Maybe it wasn't stupid then, but things have changed with the meds now available.  It appears that you have two geno-types which is not all that unusual.  It might be a good time to get your situation fully re-evaluated and take a look at things.  You certainly can't assume that your liver got better in the last 13 years.

p.s. There's a big difference between stupid and crazy.  However, not following up on your medical condition would be both.