Approved for Harvoni....Scared and Anxious to Start...Please help!

[jerash8091]

Hello Everyone.   This is my first post, so please bear with me if I've asked too much. I am a 60 year old female. I've had Hep C for 39 years. I contracted from a blood transfusion in 1978.

Genotype: 1b
Firbrospect ll Test Result: Index 25, Clinical Interpretation Consistent with Metavir is F0-F1.
Viral Load: Not sure exact, but very high.
ALT and AST: Range from 40-80

My doctor gave me the choice to treat or not to treat.  So I decided to try to see if I'd get approved and I was! Approved for Harvoni, 12-week treatment    and am now waiting for my prescription to be delivered.

Now after reading and researching I am second guessing. I have several concerns and questions due to experiences I've read about from new and past patients who did treatment.    I am very anxious, scared and confused and would like any info, experience, etc. that anyone can help me with. 

1. Should I do treatment with Stage 0-1 Fibrosis or wait?
2. Side Effects?
3. Long Term Effects?
3. Can I get Liver Cancer Post Treatment?
4. Weight Gain or Weight Loss?
5. OK to take Xanax for anxiety?

OK, I'm hoping I can get answers to these questions from several members who have experienced side effects, etc.

I thank you all in advance from the bottom of my heart for any of you who will take the time to get back to me. 

Dear Lord Bless You All! 

[strangerbynight]

Hello Everyone.   This is my first post, so please bear with me if I've asked too much. I am a 60 year old female. I've had Hep C for 39 years. I contracted from a blood transfusion in 1978.

Genotype: 1b
Firbrospect ll Test Result: Index 25, Clinical Interpretation Consistent with Metavir is F0-F1.
Viral Load: Not sure exact, but very high.
ALT and AST: Range from 40-80

My doctor gave me the choice to treat or not to treat.  So I decided to try to see if I'd get approved and I was! Approved for Harvoni, 12-week treatment    and am now waiting for my prescription to be delivered.

Now after reading and researching I am second guessing. I have several concerns and questions due to experiences I've read about from new and past patients who did treatment.    I am very anxious, scared and confused and would like any info, experience, etc. that anyone can help me with. 

1. Should I do treatment with Stage 0-1 Fibrosis or wait?
2. Side Effects?
3. Long Term Effects?
3. Can I get Liver Cancer Post Treatment?
4. Weight Gain or Weight Loss?
5. OK to take Xanax for anxiety?

OK, I'm hoping I can get answers to these questions from several members who have experienced side effects, etc.

I thank you all in advance from the bottom of my heart for any of you who will take the time to get back to me. 

Dear Lord Bless You All! 

I am in similar situation with you, got infected in 1981 from blood transfusion, fibroscan is 6.2 kps and rated F0-1, i am on my 8 of the weeks generics harvoni, if i was you i will get treatments now, the side effect i have had so far is only minor headache and only last couple hours, dont be scare go fir the treatment asap..good luck to you.

[Gaj]

Hi, I can't directly answer your questions regarding Harvoni as I didn't use that particular medication but here are some more general thoughts on your questions:

"1. Should I do treatment with Stage 0-1 Fibrosis or wait?"

You don't say what impact HCV is having on you but personally I would consider treatment now. The issue here is that fibrosis increases over time and patients with increased fibrous levels have poorer health and achieve lower SVR (cure) rates so treating prior to significant damage would appear to give the best chance of success.

"2. Side Effects?"

Like any medication, Harvoni can cause some side effects in some patients. But from what I have seen and heard from those who have treated, the (often silent) majority of patients only experience fairly minor issues such as commented on by strangerbynight above.

"3. Long Term Effects?"

Well, Harvoni has only been available for general treatment for 3 years so we don't have all the answers there yet although the science I have read indicates it is safe. On the other hand we do know, from the old treatments which were a lot rougher on our bodies than Harvoni and not as effective, that achieving SVR results in a significant increase in general health, life expectancy and quality of life and the data available so far shows Harvoni patients also experience similar or better results, admittedly currently over a shorter time frame.

"3. Can I get Liver Cancer Post Treatment?"

You have probably seen some alarming media stories regarding a few initial small studies with patients with cirrhosis, these are still being followed up and available studies of larger groups of cirrhotics haven't confirmed these results. But the important thing for you is to be aware that liver cancer in HCV patients is driven by cirrhosis/high fibrosis. For those with low fibrosis scores like yourself, once SVR is reached, there is no known increased risk compared with the general population.

"4. Weight Gain or Weight Loss?"

Harvoni won't cause this but changes to your diet (quantity or type) during treatment may. I put on about 12lbs while on my second treatment which I then had to work off but that was because my liver started functioning better and I was suddenly able to eat the fatty delights I hadn't been able to previously.....mmmmm.....pizza!!! 

"5. OK to take Xanax for anxiety?"

The Liverpool University HCV drug interaction checker is gold for these questions, in the first column select "Ledipasvir/sofosbuvir" then go to second column and type in "Alprazolam" (Xanax)

http://www.hep-druginteractions.org/

So I ran Harvoni + Xanax through the checker and they are not expected to cause any interaction.

[gnatcatcher]

Welcome, jerash8091. As you can see from the statistics below my name, my liver was in much worse shape than yours when I took Harvoni. Thanks to being cured, my liver has become considerably healthier.

As the others have said, you may as well do the treatment now. You are at the age when liver damage starts to accelerate if you don't get treated. With your low fibrosis score, getting cured will keep your risk of liver cancer no higher than people who never had hep C.

Remember to stay well hydrated: keep your urine clear or pale yellow or else follow the guideline of 1 ounce of fluid for every 2 pounds of body weight. Harvoni seems to need those liquids, and they will minimize any headaches.

I felt better on Harvoni than without it. After decades of fatigue, Harvoni gave me a lot of extra energy and a voracious appetite. That doesn't happen to everyone (a small number of people experience fatigue instead of extra energy), but if you do get the "Harvoni High," be careful not to overeat especially when treatment is over and the extra energy goes away. I gained 1.5 pounds during treatment and another 6 pounds during the following three months! Just have better will power than I did, and you should be fine.

Best of luck to you,

Gnatty

[Lynn K]

Hi

I treated with interferon based treatments 3 times for 6 months each time but my viral load did not decrease. I was likely infected in 1978 and diagnosed in 1990. I was diagnosed with liver cirrhosis in Jan 2008 after 30 years on infection.

I treated with Sovaldi and Olysio March to Sept 2014 but was found to have relapsed in Sept 12 weeks after treatment ended. In Nov 2014 I started a new treatment with Harvoni for 24 weeks and we later added Ribavirin for 15 week of those 24 weeks. The only issue I had with treatment was from the ribavirin which caused me to become anemic. My anemia returned to normal shortly after I stopped taking the ribavirin.

Anyway for me I experienced really no side effects from the Harvoni which is true for most who treat with Harvoni. I was cured of hep c after37 years of infection. My liver has improved a little but I still have cirrhosis. But no sign of liver cancer for which I am monitored every 6 months with blood testing and ultrasound.

The link between Harvoni and possible HCC is unclear if it actually exists and anyway if you don't have cirrhosis you are not at risk of liver cancer as a primary cancer. For everyone who gets another type of cancer the liver is often where a secondary cancer will develop but that is not related to hep c.

Unless you develop a different cancer which  metastasizes to the liver if you don't have cirrhosis you are not at risk of HCC.

Anyway best of luck to you

[Lynn K]

To your specific questions

1. Should I do treatment with Stage 0-1 Fibrosis or wait?

Why not and what are you waiting for?

2. Side Effects?
Most common side reported is mild headache which can be helped by keeping up your fluid intake to what we all should be doing anyway 8 glasses of fluids daily.

3. Long Term Effects?
There is no data even the clinical trials were not conducted that long ago.

3. Can I get Liver Cancer Post Treatment?
No you don't have cirrhosis.

4. Weight Gain or Weight Loss?
Only if you don't watch your diet I guess. I am not aware of Harvoni having an effect.

5. OK to take Xanax for anxiety?
If so desired that is between you and your doctor if Xanax is ok for you in general but there in no interaction with Harvoni. You do need to use caution if you take antacids or Prilosec or Zantac or similar.

[lizhigh]

For someone with genotype 1b, minimal fibrosis, and no previous treatment, Harvoni is very effective -- nearly 100% in some studies -- and most people report few side effects. If it's approved for coverage, there seems very little reason *not* to start treatment!

-Liz Highleyman