To Treat now or wait

[streamline569]

So one doctor is wants me to treat now SOC and another doctor wants me to wait the 8 months when the new drugs will be most likely be available. The one who want me to wait is also a liver transplant doctor. Oh in know my paranoia, just trying to make a decision here. Maybe a third opinion is in order. Wonder if insurance pays for third opinions......Also wondering if the IL 28b test would hurt us in the long run if it is found out that we may not be a good candidate for treatment

[streamline569]

I know treating without interferon is out of the question for me. My second opinion said he would recommend waiting for the telaprevir. He never said to wait for the drugs are that in the pipe line. No one know when we will see those drugs,.

Thank you for your concern.

[spectda]

There have been a bunch of people on this forum with low platelets from cirrhosis that have treated, many succesfully. A good hepatologist will understand your condition and monitor you carefully.

As Trinity mentioned, you will be using interferon and ribaviron with telaprevir if you wait to treat. If you plan on waiting until they are able to successfully treat you without interferon then you will probably be extremely sick and possibly too sick to treat any longer.

Ask some of the people on the forum what kind of fear they experience knowing that if they don't get a liver for transplant they will die, along with all the other awful complications of end stage liver disease.

I think NY girl was right on in suggesting you use anti-depressants. This is not an insult. It seems you are being shackled by fear and depression and are not able to make the best decision for your health. The anti depressants may release you from those emotional shackles. If you don't mind getting sicker and dying from this disease then that is your right, but if you don't want that to happen do something ASAP!

I don't know you extremely well and I don't presume understand your phycological health.   You are right that many people have fear and depression and hopelessness about their disease (and many don't), but the key here is that you are letting that fear manage your decisions and these are decisions that in the end could result in much more serious health issues and possibly death. This is the reality of end stage liver disease.

-I hope you can pull yourself together and take care of yourself.

- Dave

[Trinity4]

You will also have to use interferon in conjunction with Telaprevir.  Starting treatment with low platelets whether you are doing SOC or triple therapy, your platelets will drop.
The minimum treatment time with triple therapy will be 24 weeks.  That's 24 weeks of interferon and if platelets are going to be problematic, it will happen long before you get to the end of triple therapy, if indeed you can go to the end.

I'm a stage 3/4 and my platelets began to tank around the 4th week of SOC.  They bounced around, hits some real lows, leveled out but still remained low.  After tx, they've remained robust.

Trinity

[nygirl7]

SOC could be dangerous if it were to lower my platelets anymore then they are, where if I'm on Telaprivir"

for you end stage liver disease doesn't seem to be as big an issue as platelets.  Let me tell you once again, if you have ever watched anyone suffer through THAT you would realize that all this stalling is just nuts. I dont know what else to say that we ALL haven't said before. The time to treat is NOW and you do not know if and when telepravir will EVER be released to the public. What will you do then when you are waiting and praying for transplant and realize it's TOO LATE to do treatment?

[GreatBird]

"As far as mental health. Has anyone gone through this and not felt depression and fear and I'll add hopelessness at times in there."

I didn't have any of that. I did get teary off and on for a few weeks, but I didn't feel *sad* and I knew the meds were just messing with my chemistry and then it went away. I can do that anyway.

I didn't take ADs. Figured I'd start them when I needed them and never did.

Platelets come back when the meds are stopped--at least that's my understanding.

[vik97]

The bottom line is: Should you do everything possible to avoid progressing to cirrhosis?  If the answer is yes then you must treat immediately.