decomp. inevitable, with cirrosis?

[bootcampbilly]

ins. cov ended after 6mnthx tx. last 2 bld test und. doc wants me to go another 6 mnths due to the cirrosis.
ins. says no.
how soon can I expect to progress to decomp and eventual death. I know it is a vague question but doc  seems to skirt around the inevitable.
I am impressed with the answers and insight of the forum so maybe I can have a better clue.
thnx

[can-do-man]

I'm not sure your Ins company has to comply, as 24 weeks is standard course and while 48 weeks for cirrhotics is recommened it still would be considered extending treatment..... Many of us went thru this during the years with just SOC, I for one had this problem, was a geno 1 and cirrhotic,  48 weeks was standard but was not und at week 12 so 72 weeks was recommened, with the help of my doctor my Ins went along with it but many folks here theirs did not.

You need to get your ducks in a roll before hand, and please do not assume they have to as thats not true.

[orphanedhawk]

Personally, I did everything I could think of to increase my chances of SVR and reduce side effects afterwords. I drank 4+ cups of coffee, took vitamin D, and forced myself to drink more water and exercise.

It's not just whether your doctor is aggressive, but some are more up on current research. My hepatologist goes to every liver conference he can. He loves research and keeps up on what's new. Not all doctors do, which doesn't mean they're bad.

[bootcampbilly]

thank you, OH just gave me a good idea of the tx time. my platelets went down to 32 so tx was stopped after42 weeks and never restarted 2 months ago. my next appt. is aug 2 but monday I am going to contact my ins in case the dr. wants to restart tx.

[bootcampbilly]

Thnx, and from what Hector said yesterday my ins has to comply with 1 yr tx with cirrotic pts. I think I have become too passive in controlling my destiny. Some Dr.'s are more aggresive and suggest vit d levels and every other level, mine is not, i do not want to change him but I think the info I get on the community will allow me to push in the right direction.

[orphanedhawk]

I forgot you were genotype 2 as well.
When I first did tx and had decompensated cirrhosis, my hepatologist wanted me to do tx for 48 weeks instead of the usual 24.

How you get meds if the insurance won't help is check out the pegassit program at this site to find out if you qualify :

http://www.pegasys.com/patient/for-patients/pegassist-support/index.html

There are also other assistance programs in place for procrit and neupogen by the makers of those drugs.

[Advocate1955]

I didn't realize that you are Genotype 2.  The treatment recommendations and response guided therapy recommendations are probably different for Genotype 2.  I'm not sure what is recommended for G2's who have beginning Cirrhosis.  24 weeks may be what's recommended.
Advocate1955

[bootcampbilly]

I still have ins and did not know this info, why my Dr. doesn't give me the info you gave me is what I am going to find out monday.
if this is the case I will try and get back on tx and hope it didn,t screw up the course.
thnx alot

[bootcampbilly]

thank you for the phone numbers. I think I have become to complacent with what the ins co says. I do have assistance with the pt advocate co-pay assistance but they only ok'd $3000.
How can I get the meds if the ins does not authorize it?

[bootcampbilly]

Thank you so much for that information. Because I am genotype 2b from my understanding 6 mnths is the standard tx time for 2b. I did not want to stop the tx until my Dr. gave me the ok, but if the ins. does not authorize the meds, I am at their mercy.
I have a Dr. appt aug 2, in the meantime I would like to know if anyone with 2b has had similar rejection from ins co.

[Advocate1955]

In looking at your profile, you are 62 years old, may have had Hep C for about 23 years, and were diagnosed last year both with Hep C and with beginning Cirrhosis.  You've been treating and UND for 6 months.  Based on what others have said above, your liver is well compensated.  I agree with the others above, the first thing you must do is make sure that 1) you don't stop treatment, and 2) you have good health insurance.  Your chances for SVR will be much higher if you complete the full 48 weeks of treatment.  Since you have Cirrhosis and you are 62, if you stop treatment and relapse, it is possible that your beginning Cirrhosis will progress more quickly due to your age.  So, the best possible course of action is to stay on treatment to increase your chances of SVR.  In response to your original question about "how long" until your liver becomes decompensated, as others have said, there is no clearcut answer.  It's important to live a healthy lifestyle, eat lots of fresh foods, do not drink alcohol, avoid unnecessary medications, don't take supplements without doctor's OK, maintain a healthy weight, excercise, etc.  As hector said, since you have Cirrhosis, you should be seeing a Hepatologist to monitor both your HCV as well as your Cirrhosis.  Hopefully you will be able to stay on treatment, which means you will be monitored frequently.  If not, you should be monitored more frequently (perhaps every 3-6 month labwork, every 6 month-1 yr ultrasounds, etc.) to monitor your liver functions and to screen for liver cancer.  According to my husband's hepatologist, many people can live 10 years with Cirrhosis before they begin to have liver function problems, but you don't know exactly when you developed Cirrhosis and your age does increase your risk for liver function problems and/or liver cancer.  Your best bet is to finish the full 48 weeks of treatment to increase your odds of SVR and follow up routinely with a hepatologist to monitor your liver after that.
Advocate1955

[willbb]

Hi there...here are  some numbers possibly to contact to inquire about  assistance (direct from the drug manufactures) without insur coverage for those that do not have adequate coverage..

Good luck..
Will

Vertex: 1-855-837-8394
Merck: 1-866-363-6379

I gave you both as I do not know what you were taking and OH has given you Pegassist  .

[bootcampbilly]

Thanx for your advice it is always top seed.

[orphanedhawk]

I agree with cando. You can go for a long time with cirrhosis and of course, nobody knows when anyone's time is up.

You can get the meds for free from the pegassist program or you can fight the insurance company by showing them that it is doctor's orders.

http://www.pegasys.com/patient/for-patients/pegassist-support/index.html

And the new orals should be available in a few years, maybe as early as 2014.
Take good care of your liver, no matter what you decide to do.

Good luck

[bootcampbilly]

it is people like yourself and the other ones in the forum that us get through this ordeal.  thnx again!

[can-do-man]

Being that your cirrhotic I would agree with your Doctor as no matter what genotype you are 24 weeks does not seem to be enough, without INS you would be able toget the drugs for free... Just so you know there are many of us with cirrhosis for many years and since you have been able to do 6 months yor liver is still working... A doctor old not be able to put a time line on it........ Best to you

[SusieS2010]

There is no way to determine how long a person can live with compensated cirrhosis until decompensation occurs. I was diagnosed with cirrhosis in 1992 and I am still well-compensated.  Seeing as you are undetected you will likely never progress to decompensated liver disease.