CURED!

[superfreak]

I was so so lucky to have the best DR in the world! FDA approval came out in October and I was  on my first Harvoni Pill 12/26/2014- a true Christmas miracle! I was concerned because he prescribed the two month treatment and I would have preferred the 3 month- but I guess that is why he is the DR! I just took my last blood test- a little over 3  months since my last pill and UNDECTABLE! Needless to say I am over the moon! I wish and pray for the same results for all suffering with the C monster- but hope  is on the way!

[KimInTheForest]

Congrats! Wonderful news. May we all get there soon.

kim

[Harvey]

Congratulations on being cured! 
What was your viral profile before you began treatment?
I ask because I have recently been approved for 8 weeks of Harvoni though I thought the typical protocol was for 12 weeks.
Thanks!

[superfreak]

My viral load was low- compared to what I have read on here- 200,000 but my liver fibrosis test came back at level 3, so that was scary to me. I am 57 years old and not sure when I contracted it. I found out about it 8 years ago, and this was my first attempt at treatment because I have many other health issues that would have made interferon intolerable. I went undetectable 10 days after starting treatment and thankfully stayed that way. My side effects were different than the most common. I had horrible insomnia and a lot of upset stomach.  I wish you the best - the cure!

[Phil]

Congratulations on you SVR at 12 weeks post treatment. I'm 4 weeks post treatment of 12 weeks with Harvoni, just marking time now until that final test. Are you feeling better? For me the treatment was a bit rougher than folks like to admit, but tolerable and of course nothing like treatments with Interferon, from what people say. Took a while but feeling better everyday. Many of us who have been living with this disease for 20+ years have forgotten what normal feels like. Hope you are feeling better. Takes time.

Phil

[Mike]

Congrats Superfreak!

Welcome to your new life.

Best, Mike

[dearprudence]

Congrats to you!!!  What great news! Hope we're all there soon!

[MEG]

Congratulations superfreak! Indeed, welcome to your new life....!

[Lee]

Congratulations, superfreak!!  I am waiting for my 8 week viral load results right now, so I am hoping for undetected!  I can't wait until I'm where you are now!  Good luck on getting "super" healthy!

Lee

[Lee]

Congratulations, superfreak!!  I am waiting for my 8 week viral load results right now, so I am hoping for undetected!  I can't wait until I'm where you are now!  Good luck on getting "super" healthy!

Lee

[Toi D.]

Hello to all "C" Warriors,
I am totally new to the forum and yet I am very happy to have stumbled upon this site.  First of all, congratulations to CURED for being freed of the "C" monster.  Secondly, I am not fortunate to have any good GI doctors so I have been kept in the dark about about all of the details about my liver condition i.e. viral load, F-1, F-2 etc..

That's so much about myself but eventually I got on the Harvoni treatment on May 13, 2015 so this is my fifth week of treatment.  I have had a weekly CBC blood test and a complete detail blood test after four weeks of treatment and the results showed, in summary, are as follows:

Platelets: 95.
Lymphs: 4.2.
AST: (SGOT): 35.
ALT (SGPT): 37
HCV RT-PCR, Quant (Hepatitis C Quantitation) Quantification? = HCV Not Detected.
HCV RNA DNA Qualitative: Negative
AFP, Serum, tumor Marker: 21.4 HIGH.

I am very confused as why aren't all labs not using standard terminologies.  In my case there are two items that are confusing:
1) Does HCV Not Detected mean "UNDETECTED".
2) What does HCV NAA Qualitative "NEGATIVE" really mean?

As I mentioned earlier, I am unlucky that I have not had a good GI doctors but I am too far into the process to look for another doctor.  Any comments/suggestions would be greatly appreciated.

Infected: 1970's
Interferon:  Late 1980's - Failed.
Interferon + Virabivin - Early 1990's - Failed.
Peg Intron + Virabivin late 1990's - Failed
Harvoni: May 13, 2015.
Hep.-C Genome 1A.
Never been told about viral load.
Cirrhosis:  Late 1990's.



 

[Lynn K]

Hi Toi and welcome

1) Does HCV Not Detected mean "UNDETECTED".
My lab report says not detected I guess many here say not detected or possibly their lab reports it that way but yes basically equivalent in meaning.

2) What does HCV NAA Qualitative "NEGATIVE" really mean?

NAA I am not familiar with, do you mean RNA? Not detected just means below the ability of the test to determine if there is any virus present too few to count it does not mean there is no virus present which is why we continue to treat even after our viral load test says not detected.

I was not detected at week 4 but treated for 24 weeks because of my prior treatment history and cirrhosis makes me harder to treat. So wanting to make sure there is no virus to come back to make sure all copies of the virus have been totally eradicated.

I asked my doctor if it would be a good idea to add ribavirin to my treatment so I also took Ribavirin to my treatment for 15 of the 24 weeks. Especially as I relapsed last year after treating with Sovaldi and Olysio for 12 weeks we were throwing everything we have at the virus.

I notice you said you treated with interferon and Viravivin do you mean Ribavirin?

As you have cirrhosis you really need to be under the care of a hepatologist associated with a liver transplant center if at all possible.

Do you get abdominal ultrasounds every six months alsog with an AFP blood test to monitor for liver cancer (HCC)? Do you get blood testing every six months? Have you had any upper endoscopies to check for esophageal varicies. I developed grade 3 varicies 4 years after I was diagnosed with cirrhosis that required banding to prevent a dangerous bleed.

Have you been immunized against Hep A and Hep B? Were you given a pneumonia vaccine? Have you been advised to get a flu shot every year as soon as they are available?

Hope that help some
Good luck

[sapphire101]

TioD please print out all Lynn K's advice. Highlight all the questions and take them with you to your next appointment. If your physician does not want to take the time to explain, ask to make an appointment with your nurse educator at the office or from the Harvoni Support Path. Your health care team has an obligation to make sure you have an understanding of your treatment.


Super Freak congratulations on your Christmas miracle treatment becoming a full CURE. Many of us are now in the waiting game of post treatment and understand how relieved and happy you must be. Cheers!

[Toi D.]

Good morning to all,

Lynn K and sapphire101:  Thank you so much for your valuable information and advice.  I appreciate it.  I do have CT-Scan regularly; I requested my PCP to by pass ultrasound because more than three times the results of ultrasound were not reliable and they lead to CT-Scan anyway.

I missed-type RNA as RNN.  Here are some additional information and my response to the questions posed. 

I am posting a long and winded process that I went through so that "C" warriors who read this will continue to fight for what is right.

1.  I had been under the care of my PCP until 2011 when after an MRI test that showed abnormality.  My PCP then sent me to see a hepatologist; this doctor perform an endoscopy on me then immediately sent me to UCLA for liver transplant.  I visited to UCLA then went through a battery of tests and finally the panel rejected me because my liver was still functioning well even with cirrhosis.

2. I continued to be under the care of my PCP, including regular CT Scan, until May of 2014 when he told me about the medication Harvoni.  He then sent me to see another hepatologist for possible treatment.  I visited this doctor and went through ultrasound, and then ultrasound and CT-Scan and then MRI (there were many blood tests in the interval).  This doctor then told me that I was not a candidate for the treatment.  Needless to say how I felt.

3. I asked this doctor if there would be any other tests for me to go through to "really" determine my eligibility; he then sent me to have a liver biopsy and another blood test.  This happened more than four month after I initially visited this doctor.  The results of the biopsy came back and showed there are legions on my liver but they were all "negative for hepatocellular carcinoma"; in addition the final blood test showed "something" that made this doctor change his mind so he told me that I qualified for Harvoni.

4. This doctor sent the Harvoni prescription to my insurance and a "specialty pharmacy" for processing.  More than one month later I got a phone call from this specialty telling me that I'd receive the medication in a week with instruction.  Three weeks went by and there was no medication delivered.  I called this pharmacy and there was no answer.  I then called my insurance and was told that this prescription needed "pre-authorization".  Three weeks later, I received a letter from my insurance informing me that my prescription order was DENIED and I had the right to appeal.  The reason for this denial was that the biopsy did not showed the F3 - F4 scores.  I went back to reread the biopsy report and there was nothing to indicate the F3 - F4 score.  I then called the doctor office and informing them of the denial and reason thereof.  It was March 2015.

5. I continued to call my insurance and the doctor office then on April 2015 my insurance told me that the results of the biopsy was outdated.  I got really angry and told them that I have been going back and forth with the Dr. office - ins. co. - and specialty pharmacy for several months and nothing came to conclusion.  Many additional phone calls from me to Dr. office and ins. co. (4/22/15).  During this period I was helped by an excellent and compassion nurse from the ins. co. (she filed an on-line "urgent" appeal for me because I only had 90 days to appeal).

6. 4/28/15:  The nurse from ins. co. called and confirmed that she talked to the mail order co. and learned that my appeal was approved.

7. May, 2015 I got a call from the pharmacy informing me that everything is good to go and I should received the medication on 5/5/2015.  on 5/5/2015 I received the medication but not taking it right away.  I called my Dr. office and set an appointment on May 12, 2015.  Met with the Dr. and I started taking the med. 5/13.  In the interval I received the letter from ins. co. informing me that they approve the treatment.

8. On 5/8/2015 Express Scripts (my ins. co.'s primary mail order company) called and informed me that unless I let them send the medication then the coverage will be cut off after the second month.  I called ins. co. and they confirmed it.  I then, again, called the pharmacy that had sent me the first month supply to inform them of this fact; they concurred and told me that they will stop the second shipment (instead of the third) so here I am on the fifth week of treatment.

I am sorry for the long-winded post but the moral of the story is:  Keep on fighting for what is our right and regardless of the emotional ups and downs of the fight, we come out victorious.

7.

[Lynn K]

Hi Toi

Yes I went through similar myself. I am F4 cirrhosis and a 3 time null responder to interferon based and also relapsed after taking Sovaldi with Olysio for 12 weeks in spring 2014.

I have express scripts as well and they also denied me initially.

I had been around the block once with them the year before with the sovaldi oylsio so I knew I needed to be on top of the situation as best as I could. I found an email address where I could directly contact them ExpressRxHelp@express-scripts.com I was able to get approved in just about 3 weeks and then had an inside person at Accredo Express Scripts. Accredo is Express Scripts specialty pharmacy who handles the special medicines like Harvoni.

If you have Facebook you should read some of the comments on Express Scripts Facebook page you will see we are not along in battling their company.

https://www.facebook.com/ExpressScripts?fref=ts

Congrats at winning the fight to get the meds and good luck on winning your fight with hep c