Harvoni : Waiting And Watching

[LilyV]

I thank those  people who  post on side effects and SVR results as time goes on, I am waiting a bit to take the meds, because of horrible side effects when I was on a clinical trial with a similar drug (different company, one pill a day for 12 weeks , no Ribo)

The thing is, even though I had to stop the clinical trial after one week, my viral load went from 9mil to 250k IN ONE WEEK. My AST and ALT levels were almost normal after that week. I was disappointed when I had to quit the trials, and to this day they do not know why I reacted the way I did. My blood pressure soared, even though I was on blood pressure meds, I had panic attacks and insomnia so bad that I literally did not sleep for 4 days. I had a low grade fever, and joint pain as well. It was awful, so bad that the research team thought it to risky for me to continue. I still experience joint pain that I never had before taking the drug, almost six months after I stopped .

This was a Phase 3 trial on a drug that generally had NO side effects on most of the other people in the trial. There are always exceptions to the "mild or no side effects" crowd ;)

I want badly to get rid of my HepC, the VL is slowly creeping back up , but am honestly a bit nervous since all these new drugs are similar in the way they work.

The fact that the drug got rid of the virus in my body SO quickly reiterates why my Gastro calls this new generation of HepC drugs a "Shock and Awe Nuke " drug. They work and they work quickly, but what are the long term side effects, and how does it interact with other medications? (In my case, blood pressure meds and beta blockers.) It is just too soon to tell I guess.

My last biopsy six months ago showed no cirrohsis, and my doc wants me to wait a bit "till the dust settles " to take treatment since my liver is fine and I am asymptomatic. I want a cure, but not at the expense of the rest of my body.

I will be tracking posts here and in other places and hope one day I to one day be free from HepC once and for all, congrats to those who have beaten it!

[hepcandme]

I relapsed on 12 weeks of S/O last year - undetected at the end but relapse discovered at 4 week EOT

Susan brings up a valid point - and Susan, I just want you to know how much I feel your pain. I treated and relapsed only once and it was like a gut punch. Every time I read about a relapse it feels the same way

But I have advanced liver disease and, if you wait to treat, you could end up with cirrhosis as well so my inclination would be to treat and get rid of the virus before it does any more damage  

I am also taking Rbavirin that has a listed side effect of sadness and depression. My personal experience has been that this comes and goes in waves and is not at all unmanageable. Long walks, massage, nice dinner with your best friend and, like I said, have not experienced this very often

A lot to think about, Lily,  but you are doing the right thing by asking questions and being your own advocate

[keepingOnkeepingOn]

"I know they would not put me on interferon back in the day because of my psychiatric issues, but I presumed the new class of drugs did not have any effect that way.   Maybe its too soon to tell. "

Everyone is different. You could have super mild anxiety but nothing like you have experienced on interferon if that's your question. The new meds have mild sides of a headache and tiredness if any. No one should wait to be cured if they want treatment now before anymore damage is done.
I saw a commercial on TV for Harvoni and they mentioned not to take any other meds while on it. You'll have to check with the manufacturer and or your Doc.

[susan400]

Hi there.  I can understand wanting to watch and wait a bit.  I, too, am doing that, but just for a different reason.  I've treated so many time (you probably don't want to know how many) and every time, except the last treatment last year ( I was a null responder).  The, last year, I did the Sovaldi, [Interferon (Pegasys)] and Riba.  I initially, was so excited, because I became undetected on week 4 and I thought, finally, I'm getting somewhere, this has to be my time, my miracle drug.  I was clear still on week 8.  And then, one week post treatment (it was a 12 wk treatment), I was still clear.  So, naturally, I thought, I'm really going to be SVR.., I couldn't hardly believe it.  And then, I got kicked in the gut because on my 12 wk post TX viral load, I had relapsed.  So, then, after that the Harvoni was approved.  Several members on here, who had also treated with the Sovaldi and relapsed- had decided to go on the Harvoni. But, I think those members, if I'm not mistaken, had alot more liver damage than I do.  So, I am watching and waiting to decide if I want to put myself through this emotional roller coaster yet again.   I, too, have a diagnosed anxiety disorder/panic attacks, etc. In my case, it was from a trauma I experienced like 32 yrs ago, but the effects of it case me to be hyper(fight or flight) awareness type of thing that if I like hear a loud noise that unexpected, or hear people getting into a shouting match..., or something happens with my finances or somethng happens to a family member... ,on and on,  it will just flare up out of nowhere!   Then, after that I'm feel depressed because I feel like I do't fit in

[patra_]

Thanks for the info.  I KNOW, from personal experience that INF can give you fever and joint pain, and had you been on that, I would have said that it sounded like a reaction to the INF COMBINED with a Panic Attack, but it looks like you tx was something way more recent , if it was one pill per day, so I have no clue, BUT that can still be what happened with the trial meds.

Whenever you go on tx, be sure your Dr gives you an Anti-Anxiety Med that CAN be taken with you new med safely, and be sure and discuss ALL of the effects of the trial med - not just that it as a combination of Panic and something.  The more complete the information, the better the Dr can prescribe and monitor you.

Hope they find an answer soon!

Blessings,

Pat

[LilyV]

I little bit to clarify about the Panic Disorder,  the researchers new I had it when I applied,  and ruled out that the symptoms were Panic, because of the joint pain and fever that came with it.   However, as someone who has lived with panic all my life,  it sure FELT like panic attack to me.  Next time I take treatment,  I am going to insist on not being forced to abstain fron my " as needed" Panic meds.

If anyone out there is going to try any treatments for HepC , and had been diagnosed with any type of mental illness, please get your psychiatrist or therapist in on your treatment.  

[LilyV]

I was diagnosed in 2007,  Genotype 1A.  Was treatment naive.

Before I was diagnosed, I was a social drinker, and smoker, and felt tired ALL the time, but that was about the only symptom I had of the virus.   After the big scare of diagnosis,  I cleaned up my life style,  stopped all of that, eat clean ( for the most part lol) and have felt great.

Liver panels for the most part have been close to normal for the last few years, except briefly when I started taking heart meds ; apparently they can be hard on the liver.

As good as I feel, (and I know I one of the lucky ones not to be sicker),  it's funny about HepC,  I can never quite forget I have it.  It is always in the back of my mind and I was so close to getting rid of it.   Someday soon I hope :-)

One thing about my failing the trial...I wonder sometimes if if had to do with the fact that I suffer from Panic Disorder,  because the horrible sides I had felt like an extreme panic attack,  well except for the fever.  

I know they would not put me on interferon back in the day because of my psychiatric issues, but I presumed the new class of drugs did not have any effect that way.   Maybe its too soon to tell.  

[patra_]

So Sorry you had those tough Sides and had to stop.  Those number changes were very impressive!  Just think what they would have been had you been able to stay on the the trial meds for four or six weeks!

Anyway, so sorry, AND what is your genotpye?  How long have you been diagnosed?  Was this you first treatment?  You have already told us how high how high you Viral Load was.  Again, an amazing drop in such a short time!

According to your liver tests you certainly have time to wait.  In the meantime, drink LOTS of water and eat a liver friendly diet, exercise within you abilities (don't push yourself and wear yourself down), and if you use alcohol or tobacco, quit.  Those things will help your liver stay healthy (you too).  It may also help you to deal with the next meds.

Good luck and Blessings,

Pat