Tx versus post tx long term effects

[Puppyluvur]

Hi all, I was reading some really frightening posts about long term tx effects. From what I could tell they were all from around 2007 and from interferon. I'm still trying to decide wether to wait or start tx soon. I'm genotype1a. Just had labs done and viral load has went from 118,000 to 323,000 in year and 2 years. Ultrasound and biopsy show no chirrosis or fibrosis  of liver. All my liver labs always come back normal. Only reason way I found out I had the hep c was I started going downhill energywise an dr ran test. Could anyone enlighten me on longterm effects of newer tx's out please. I go back to hepa dr. On 28th and really wanna be well inford this visit   Thanks, Sandi

[Grandmajane420]

I did my first dbl tx therapy in 2005, I relapsed after 6months. My recovery after wasn't as bad as I was expecting. The brain fog and moodiness stopped with in a month 2 at the most. My energy levels got better in a progression over a couple of months. The sickness directly related to the interferon went away very fast within a month I'd say. I am type 1 or 2 (?I always mix that up.)  stage 1. now I'm stage 2. Just started my trpl tx.
For me the emotional toll was the highest. If you have good support that really helps.
Have you made any decisions yet?
Everyone is different, this was just my experience. Good Luck

[Dee1956]

I agree with AJW
If you can afford to wait for the drugs currently in research I would wait.
Good Luck to you
Dee

[Ajw78757]

If I would have had no scarring, no inflammation, and normal liver function tests I would have waited.

I did have a lot of fear going into treatment- but everything I read said everyone is different, and there is no way to know until you're in it.

so far it has been a little sucky- but tolerable, and no where near as bad as I thought it would be.

That being said,

If everything shows your liver is functioning and the virus does not appear to be attacking your liver plus a biopsy shows no damage-

I would personally hold off on subjecting my body to the treatment and monitor my levels every 4-6 months and biopsy every couple years.

[OdinLovesLife]

My current specialist, a professor involved in clinical trials, recently rattled off the merits and demerits of this and that triple therapy, and the newer therapies which may allow us to avoid Interferon altogether. I haven't been fully tested for a while so he ordered a battery of tests. His attitude is let's look in great detail at everything before deciding. We are delving into my current condition, my past history (partial responder - failed IFN/RIBA treatment), and lifestyle factors. He said we might wait if we can. Personally, I was very pleased with that approach.

My experience with Interferon makes me want to avoid it if I possibly can. However, I will take it if upon the best medical advice I have to treat as soon as possible.

It is a very serious decision. The current triple therapies haven't been around long enough to know if the long-term effects are worse than double-therapy. We do know this though, triple-therapy includes Interferon and Ribavirin. Even a short exposure to those drugs can have long-term negative effects on your health. I was very healthy and mentally capable before starting treatment. I can only say that it in a short period of time it did a lot of damage to my overall quality of life. Losing my liver would be worse though.

If what you say is a correct picture of your health - my personal choice would be to wait. Just be sure that you keep in touch with a very good specialist and monitor the situation.

You have already been given good advice about viral load. Don't let that scare you one little bit.

One more thing, since you appear to have time. Never allow yourself to be treated by anyone but the very best specialist you can find. You may need to see more than one before you can make that decision. Educate yourself about health providers and treatments so that you can be ready when it is the right time to undergo treatment.

Don't rush into it. Don't be scared.

[Puppyluvur]

Sorry accidental double post

[Puppyluvur]

Yeah, not supposed to happen to me. So much for always trying to do the right things. I made my doc rerun labs 3 different times before I finally accepted it and saw the hep dr.

[Puppyluvur]

"Not supposed to happen me" yes that was my thoughts when I was diagnosed James . So much for always trying to do the right things. I madey doc run the tests 3different times before I accepted it and went to the hep dr.

[James10500]

It's scary to read that stuff,and I eel for those who a really messed up.  There was a doc who posted she had to quit her career due to long term sides !  She was an anesthesiologists and couldn't mentally do what she had pre tx.  It's a serious topic.  I am post tx 71/2 months on one hand I feel some changes, on the other I have more core energy than before.  For me I'd do it again given what I know now.  The flip side of not doing tx is far worse (possibly), but I'd hate to assume it won't happen to me then die from liver failure.  Heck HCV wasn't suppose to happen to me.

[Puppyluvur]

Thank you kat. I agree. I would prefer to here a real persons experience and been there than just reading some money hungry drug company's  package insert.  That's just scarier.

[katla]

desrt wrote:

"All you'll get from this forum will be a lot of 'opinions' based on people's personal experiences... If you wish to be well informed, read the package inserts (Google Peg-Intron and Pegasys). "

I couldn't disagree more. Clearly you should read the inserts but relying SOLELY on the word of the pharmaceutical companies is, imho, a terrible idea since it's obviously in their financial interest to downplay the sx. There is a lot of valuable information to be had from many different sources.

[Puppyluvur]

I'm just trying to figure out if I want to wait just a while longer and maybe something even better would be available. I have other health issues that I'm afraid may get in my way of me tolerating    
The side effects of today. I hope I don't seem like I'm making light of this disease. I promise you I'm not. Just scared to death either way I go.  I'm sure I'm not the only one.

[Puppyluvur]

Thanks joe

[joemc34606]

Ive treated twice before I am now on triple therapy and und at 4 weeks. There is always possible long term side effects but Im sure there not as bad asnot treating at all and end stage liver failure. Good luck with your decision. Joe

[Puppyluvur]

Thanks desrt for the info. Well I wouldn't have to worry about the thyroid thing because mine was ablated in 2000 due to graves disease .

[desrt]

P.S.
On a personal note, I've long ago stopped trying to figure out which of my post-tx health problems are related to carrying the virus for almost 30 years, which are related to the IFN, and which are simply old age and my own abuse of my body. Way too many variables. At 8.5 years post-tx I lead an active, productive life and am extremely happy I chose to treat when I did

[desrt]

All you'll get from this forum will be a lot of 'opinions' based on people's personal experiences - and that can be a wide range. If you wish to be well informed, read the package inserts (Google Peg-Intron and Pegasys). What you'll find are a tiny percentage of patients who either suffer permanent thyroid damage or some auto-immune reaction. Also a tiny, tiny percentage who suffer a psychiatric reaction. If you have no fibrosis I'd hazard a guess that your energy problems may have some other root cause. Your time and energy may be better spent trying to find what that is.
A shift in viral load from 118k to 323k is insignificant and can be accounted for by testing error or simple fluctuation in viral load. If you measured it today, it could be 50,000 or 500,000 and it really wouldn't mean anything.
Good luck. The time has never been better to clear the virus with a minimum time spent doing IFN. On the other hand, I've never heard any challenge to the claim that 80% of untreated, chronic HCV patients will die of something else. (Usually chronic exposure to RJ Reynolds or Micky Ds.)