Author Topic: Harvoni Has Clobbered My Virus (Read 28926 times)

Oneupsf · « **on:** November 18, 2014, 11:27:42 pm »

I posted in co-infection but, it's lonely over there

Hey, Good News!

I started Harvoni on October 16th. Baseline viral load was 10 million (9 million and change). The viral load results after 11 days on Harvoni was 73.

After 28 days of treatment, HCV viral load = UNDETECABLE. AST 24, ALT 28 and bilirubin 1.0.

After dealing with the HIV virus for 28 years, and then learning of the Hep C in 2009, it's been a long road to get to this point.

If I had to decide which virus had to go, I'm glad it's the Hep C. I need my liver for the HIV drugs.

It's amazing the difference in therapies this time around. In 2010, I was doing the PEG/RIB and D/C'd in 12 weeks because of side effects.

I had issues with my insurance carrier denying coverage for the Harvoni after I started. The doctor and I fought the insurance company the day after the denial was issued. Continuation of the therapy was approved in 24 hours after they received the doctors appeal and my letter.

If your insurance company is giving you a hard time approving the new therapies, fight them! Play their game and keep escalating the appeals process. There were five levels of appeal I could have gone through. The sixth level would have been before a law judge in regular court of law. No judge is going to deny you life saving therapy. The insurance company would not want the bad press. FIGHT THEM!

Best Wishes to Everyone!

mikeyman · « **Reply #1 on:** November 19, 2014, 09:30:15 am »

Congrats oneupsf! I'm 9 days into a 24wk round of Harvoni and feeling great!
Keep it up
peace
Mikeyman

Bucky · « **Reply #2 on:** November 19, 2014, 09:59:29 am »

Great news from both of you!
Bucky

BattleTheBeast · « **Reply #3 on:** November 19, 2014, 12:16:31 pm »

Great news!! Love seeing all this goodness, makes me smile

Dee · « **Reply #4 on:** November 19, 2014, 12:47:59 pm »

Congratulations! This is wonderful news

I am so happy for all!

Paleface · « **Reply #5 on:** November 19, 2014, 01:35:22 pm »

Congratulations!!! I have had similar results with Harvoni and feel great!! Keith

penny · « **Reply #6 on:** November 19, 2014, 02:51:22 pm »

Paleface and One up sf
Still no sides???

Oneupsf · « **Reply #7 on:** November 19, 2014, 04:20:48 pm »

Thanks Everyone!

Hi Penny,

The only side effects I have experienced are a slight headache and fatigue.

The headache is not bad at all, a little throbbing from time to time and usually when I wake up in the morning. After moving around, drinking water and rehydrating myself it goes away. On occasion I will get a headache at other times of the day but they are short lasting and I have not had to take any medication for them.

The fatigue is somewhat more of an issue. It's not like the fatigue in the past that is an associated symptom of Hep C. The Hep C fatigue has pretty much gone away. My legs don't feel like they weigh a million pounds anymore and, I don't feel like a flat tire.

This fatigue or tiredness is Harvoni associated. I've noticed that I'm not sleeping as soundly as I used to so I'm more fatigued during the day. I take naps or sleep in as long as I want. I also take 30mg of temazepam at night for sleep because my HIV antivirals can cause some insomnia.

The longer I take Harvoni I'm noticing a decrease in the headaches and insomnia.

Bottomline, I feel so much better than I did three months ago! I feel like a new person and getting stronger everyday. My energy level is steadily increasing and I'm back to walking on the treadmill for 45 minutes a day.

I feel so fortunate to still be alive to experience the return of some good health!

Mike · « **Reply #8 on:** November 19, 2014, 07:05:06 pm »

Hi Oneupsf,

That is such great news! I truly understand the battle fighting Hep-C and I'm so glad to read that the treatment has knocked this virus on the canvas!

Welcome to the undie club, which is the last step in slaying this pernicious, bastard of a virus.

Best, best wishes, Mike

Paleface · « **Reply #9 on:** November 19, 2014, 07:42:25 pm »

Quote from: penny on November 19, 2014, 02:51:22 pm

Paleface and One up sf
Still no sides???

Hey Penny, I still get headaches now and then but they are not bad. Usually goes away when I drink water. I'm a little tired but Ive been tired so long it feels normal LOL!! I am thrilled with this treatment!!
Keith

penny · « **Reply #10 on:** November 19, 2014, 09:19:10 pm »

This is a great report paleface and oneup!

BrightFuture · « **Reply #11 on:** November 19, 2014, 09:27:21 pm »

Fabulous news Oneupsf! Your e-happiness is infectious!

This is my first post and I began Harvoni today. Interested to read up on other's experiences, successes, etc.

Best of the best to all!

Dee · « **Reply #12 on:** November 20, 2014, 11:34:32 am »

Thank you all for sharing, this is wonderful. Thank God there is a new tx without the interferon.
This is great!

JillLynn · « **Reply #13 on:** November 20, 2014, 02:44:59 pm »

congrats oneup!!! That is fantastic news! I just had my 28 day blood work on Harvoni and the virus is still detected. the test only goes as low as 15 but that means it is still detected in my blood. DOG GONE IT!!!!! I am so happy for you One UP!!!! That's what I'm waiting' to hear friend! Bless you all....rooting for each and every one of you!!!!

penny · « **Reply #14 on:** November 20, 2014, 02:48:03 pm »

Maybe they can add riba for a boost?

JillLynn · « **Reply #15 on:** November 20, 2014, 02:52:16 pm »

I'm hoping and praying my next 2 week blood result will be undected! Just wondered if anyone else on HARVONI still had any virus detected at week 4 or day 28 on treatment. HARVONI is what I'm wondering about here.
Thank you!

Mike · « **Reply #16 on:** November 20, 2014, 05:36:14 pm »

Hi JillLynn,

Don't worry about the 4 week results, the only thing it confirms is that the treatment is working.

There is no correlation with this measure and successful outcome.

The one that counts is the week 12 end of treatment result (EOT12) and the 12 weeks post treatment results (i.e. SVR12 = cured).

Best wishes, Mike

BrightFuture · « **Reply #17 on:** November 20, 2014, 07:55:02 pm »

Oh Mike?

You sort of answered the question I have after reading all these informative, supportive posts. Do you and others recommend I have regular blood tests to check levels? My GI suggested I only follow up toward the end of my twelve week treatment.

Thanks for all!

Judy

JillLynn · « **Reply #18 on:** November 20, 2014, 08:16:34 pm »

Hi Judy. Hi Mike! Thank you for all of you being here! It doe help.

I got the viral load prescribed at 4 weeks and am not scheduled again until week 12.

Although she put another one in for 2 weeks since it was detected still with the 28 day blood draw.
My dr's asst said it SHOULD be gone at week 4. When I asked her what if it isn't? She said "Oh it will be!" So....we shall see! The side effects are NOT bad. I had some nausea and it's gone for today.

I am genotype 1....perfect candidate for Harvoni. fingers and toes crossed for us all!

JillLynn · « **Reply #19 on:** November 20, 2014, 08:18:43 pm »

Judy. I did a blood test a week until 4 week just to make sure I was handling the treatment.

Only the viral load on week 4.

Then I have one more blood test just to see how treatment is affecting me.

And one more viral load at the end of 12 weeks.

( as I mentioned though, I am getting another viral load blood draw in 2 weeks)

JillLynn · « **Reply #20 on:** November 20, 2014, 08:21:30 pm »

oh and Mike....congratulations to you too!!!!! AWESOME! I love the "undie" club!

Mike · « **Reply #21 on:** November 20, 2014, 09:01:05 pm »

Hi JillLynn,

I had blood work on week 1,2,3,4, 8 &12.

This was because I was taking Sovaldi, Interferon and Ribavirin.

Interferon has some side effects, and, when taking it, your thyroid levels need to be monitored. Ribavirin can decrease your red blood cell count and has to be monitored as well - thus the numerous labs.

My viral load was taken on week 4 & 12 (week 4 was just to make sure the medication was working - that is decreasing the viral load). It was accidentally taken on week 1 (which was a fluke).

This isn't the case with Havroni - the side effects caused by Interferon and Ribavirin - so the blood work protocol is different and less stringent.

Best wishes, Mike

BrightFuture · « **Reply #22 on:** November 20, 2014, 09:14:04 pm »

Thank you JillLynn and Mike,

Wishing us all the best and to hear that we are cured!

Big healthy hugs to all,

Judy

Johnny_Wayne · « **Reply #23 on:** November 20, 2014, 11:28:56 pm »

This is fabulous news! I believe that everyone here has a reason to "hope", and this kind of news reinforces and renews that hope. Blessings.

- Johnny

JillLynn · « **Reply #24 on:** November 21, 2014, 01:21:05 pm »

I am so grateful to have all of you with me on this journey. I've never used a forum before and I"m feeling the connection with you all and that is really helping. Thank you for sharing and being so supportive. Feeling so much hope right now thanks to you guys!

RichardEll · « **Reply #25 on:** November 26, 2014, 02:20:30 am »

ONEUPSF: Congratulations!!! So happy for you. I'm 1A, partial responder twice in the past 20 years, been through Hell and back. Decompensated badly 5 years ago, been fighting for my life off and on ever since. Hospitalized for 3 days, a week ago.

I, too, had the same experience with my insurance companies. DENIED S/O 10 months ago, Harvoni came out in Oct., and my Drs. pounced. So did I - made an impassioned 2-hour phone call, at the end of which they simply confirmed my shipping address, and told me it would be there in 48 hours. It was.

BEEN ON Harvoni 8 days now. My constant companion - a deep, sickening liver ache - has almost completely vanished. I have other issues unrelated, such as intestinal inflammation, Ascites, fever, a bit of fluid around one lung, etc. - so I'm still sick, but I believe Harvoni is the Key To The City. My MELD score for Transplant is 31, and ridding myself of the virus will put me in good shape for a TP. (Already moved up to #6 on the List). Side effects identical to yours: Mild fever, hardly even worth mentioning. And a strange "additional" fatigue/exhaustion. So weak, I am wobbly after walking 100 yards. (extremely low platelets).

I love to read accounts like yours. This gives me even more hope. My Drs. are realizing 100% success with over 80 cirrhotic 1A patients so far. Our odds are EXCELLENT. Godspeed you to full recovery, and keep posting!!! TY.....RL

Oneupsf · « **Reply #26 on:** February 21, 2015, 02:58:20 pm »

UPDATE

Harvoni appears to have done the job thus far. Six week post treatment with Harvoni has yielded, AST = 21 and ALT = 21, and no detectable HCV.

Next milestone will be at 12 weeks!

What a long and exhausting journey this has been. It's been well worth the trip of treatment to get this far.

The only lasting effect and I'm not sure what to attribute it to but has been weight gain. I have gained 30 pounds since starting Harvoni. Has anyone else gained weight?

I hope everyone out there is well and going after that dragon.....

mikeyman · « **Reply #27 on:** February 21, 2015, 04:07:20 pm »

Welcome to the UD club oneupsf!
Congrats!

Oneupsf · « **Reply #28 on:** February 21, 2015, 07:37:22 pm »

Thanks Mikeyman!

Paleface · « **Reply #29 on:** February 21, 2015, 09:01:49 pm »

Congrats Oneupsf!!! I should have my 4wk post treatment Tues or Weds. Here's to NO RELAPSES :-) Keith

Oneupsf · « **Reply #30 on:** February 21, 2015, 09:25:40 pm »

To NO relapses, Paleface!

I bet your liver is vacationing on the beach these days. My baselines were not half as bad as yours and I've been HIV positive since 1985.

I'm sure you have it made in the shade

Keep in touch and my fingers are crossed for you....

ma snart · « **Reply #31 on:** February 22, 2015, 12:33:07 pm »

All, I know everyone wants to see the word UNDETECTED, but this could be the reason you only see a <15 or maybe a <50, please check with the Lab that you are using, I called the genetics lab director of a major Hospital in our town that are performing Helens testing and on week 8 she still showed a 22 viral load, on week ten we got a <50
I would have been very confused, but since the director told me their standard is to inform if even 1 is visible, when UNDETECTED they report the <50. he explained that there is so much confusion that this how they have informed all doctors in town of how there testing will be reported. They do not report the word UNDETECTED on any results they perform. I find this hard to believe that everyone else gets the words UNDETEDTED, but is this from the actual report or from the Doctor reporting what was reported and they translated it? See below for the actual reports from week 8 and then week 10.

Component Standard Range Your Value
Hepatitis C Quantitation by PCR IU/mL <50 IU/mL 22
Hepatitis C Quantitation by PCR logIU/mL <1.70 logIU/mL 1.35

Component Standard Range Your Value
Hepatitis C Quantitation by PCR IU/mL <50 IU/mL IU/mL <50 IU/mL
Hepatitis C Quantitation by PCR logIU/mL <1.70 logIU/mL <1.70

I have confirmed with Helens doctor, and yes he confirms this is normal reporting and it does equal UNDETECTED on week 10.

Anyone else have any thoughts on this.
Thanks
Ma Snart

mikeyman · « **Reply #32 on:** February 22, 2015, 12:50:51 pm »

LOVE seeing all the folks going Undectable!
We will all kill this beast within!

mikeyman · « **Reply #33 on:** February 22, 2015, 12:53:04 pm »

Ma Snart, mine shows as <12. The test my doctor's use goes from 12 to 100,000,000.
Mine did not say undected, but my doc says it is as the test they use cannot detect below 12, so it's considered Undetectable. They all are different on how they are reported. Weird eh? But I still have 2 more bottles to go for 24 weeks total. My results were from week 13.
keep up the fight!
MikeyMan

ma snart · « **Reply #34 on:** February 22, 2015, 01:05:32 pm »

That's what I was trying to convey, you could see a ,<5, <12,<15, or maybe a <50
but chances are that equals Undetected but you should check with the lab that performs the testing. I was surprised that her week 8 actually showed a number versus the <50 on week 10 to prove that what I had been told was actually what was reported.
The Genetics Lab director told me that he can verify any virus below the lower limit of quantification of the capabilities of their equipment down to ZERO and will report them as such, WOW.
BTW Helen is on week 14 now of 24 and doing so much better, today is her birthday and I got her a new bike, which she thought she would never be able to ride again.
Snart

BubbaT · « **Reply #35 on:** February 28, 2015, 04:53:05 pm »

Quote from: RichardEll on November 26, 2014, 02:20:30 am

ONEUPSF: Congratulations!!! So happy for you. I'm 1A, partial responder twice in the past 20 years, been through Hell and back. Decompensated badly 5 years ago, been fighting for my life off and on ever since. Hospitalized for 3 days, a week ago.

I, too, had the same experience with my insurance companies. DENIED S/O 10 months ago, Harvoni came out in Oct., and my Drs. pounced. So did I - made an impassioned 2-hour phone call, at the end of which they simply confirmed my shipping address, and told me it would be there in 48 hours. It was.

BEEN ON Harvoni 8 days now. My constant companion - a deep, sickening liver ache - has almost completely vanished. I have other issues unrelated, such as intestinal inflammation, Ascites, fever, a bit of fluid around one lung, etc. - so I'm still sick, but I believe Harvoni is the Key To The City. My MELD score for Transplant is 31, and ridding myself of the virus will put me in good shape for a TP. (Already moved up to #6 on the List). Side effects identical to yours: Mild fever, hardly even worth mentioning. And a strange "additional" fatigue/exhaustion. So weak, I am wobbly after walking 100 yards. (extremely low platelets).

I love to read accounts like yours. This gives me even more hope. My Drs. are realizing 100% success with over 80 cirrhotic 1A patients so far. Our odds are EXCELLENT. Godspeed you to full recovery, and keep posting!!! TY.....RL

Richardell and one up , you guys are warriors!

I wanted to echo the thanks giving to God and harvoni, your courage and determination make me face tomorrow
With hope and endurance!

Godspeed and right on!

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Author Topic: Harvoni Has Clobbered My Virus (Read 28926 times)