Harvoni 24 week EOT results check in.

[Mugwump]

I will not be able to post my 24 week results until Nov 2015. There should be some who can post to this thread soon. It will be nice to see a good correlation between 12 week EOT and a cured status. But if there are some relapses to report post 12 week then a thread like this might be a good place to help each other deal with the inevitable disappointment.

Or perhaps it is equally important that we share the joy of being confirmed cured at six months post Harvoni treatment. I know that there were quite a few treatment failures with the older treatments that had post twelve week relapses happen, so if Harvoni proves to knock HCV completely out if you clear at 12 weeks then that joyful tale needs to be told especially for those who relapsed after interferon based treatments.



 

[chino1969]

Hi mugwump.
I just finished 24 weeks of Harvoni.  My 12 week EOT blood work will be the 1st week of November & 24 week EOT the 1st week of Feb. if required.  I see my doctor Sept. 1st and am waiting on my EOT bloodwork.  Now the waiting game begins.  I knew the treatment was working as I was SVR 4, 12 & 16 weeks into the therapy.  Anyone else feeling anxious?

[Mugwump]

Hi mugwump.
I just finished 24 weeks of Harvoni.  My 12 week EOT blood work will be the 1st week of November & 24 week EOT the 1st week of Feb. if required.  I see my doctor Sept. 1st and am waiting on my EOT bloodwork.  Now the waiting game begins.  I knew the treatment was working as I was SVR 4, 12 & 16 weeks into the therapy.  Anyone else feeling anxious?

I am sure you have it beat. The most difficult is the wait to 12 weeks EOT SVR confirmation! That is the big one. What all of us who failed tx in the past need is assurance that the treatment this time around really did knock out the dragon for good. SO I started this thread for those who fail tx as much as those who succeeded. The real victory thread is the 4 or 12 week post Harvoni thread.

Perhaps another sub section on this forum needs to be considered by the moderators? I suggest a title something like this "Getting our lives back after HCV"  because many will need to learn to deal with not having HCV and we could share our experiences both good and bad. I know that being F4 because of long term hcv is not a quick death sentence but it it is a little to close IMO. So those of us that were blessed and only made it in the nick of time really should communicate about the ways we deal with life after HCV.

Thanks for the response
Eric

[Lynn K]

My 24 weeks post date is 10/19

I'll be back

:-)

[chino1969]

Eric,
Good point about dealing with life after treatment.  For so long, I've had to live with this disease and the side effects.  I've had Hep since 1973; diagnosed with Hep C mid 90's.  When first diagnosed it was referred to as Non A-B Hepatitis.  At any rate, it will be a change being free of this disease.  I still have cirrhosis to worry about but my hepatologist, a renowned research doctor, tells me that I am between 1 & 2 on a scale of 10.  I see him Sept. 1st for a follow up and to get more lab scripts.  I will keep posting as it is good for others to listen and share their experiences.

[nicole_1234]

Still UNDETECTED 24week post EOT!

[KimInTheForest]

Still UNDETECTED 24week post EOT!

Congrats Nicole!! on your SVR24. I still have to reach SVR4 (test coming up tomorrow) and SVR12. But if all goes well, I will have SVR24 news in late January 2016.

And thanks Mugwump for starting this thread!

kim

[Mugwump]

There will be many who leave this forum after they clear the virus and I can understand this, many want to try to forget that they ever had the disease. Our posts and experience as the first to be treated successfully and especially those of us who had gt 1a and liver damage, should document how well we recover over the next little while this could become crucial info to encourage others that are just starting this journey IMO  So it is worth the time and effort.

We are not the real HCV heroes, those are the ones who either died trying get treatment or did not make it for any reason. We still have a story to tell and work to do.

So to date we have

nicole_1234 

and

Paleface
who already posted about his 24 post tx result SVR here http://forums.hepmag.com/index.php?topic=3093.0
He must have been on shorter treatment to have reached 24 week svr by July 28?

SO

2 for 2 = 100% SVR 24 rate reported for Harvoni so far if you reach 12 week SVR.

This is kickass STUFF I can remember the majority of relapses on interferon were after 12 weeks and many reached 12 weeks only to relapse soon afterward. I know I did! I was <15 at 12 weeks EOT,  then on my 24 week EOT VL was way up in the stratosphere around 11 million so my first tx was a real bummer for me because it almost worked.

The interferon/rib almost worked for me in 2003-4 but the disease and treatment absolutely kicked me in the ass that time around. And it took over a year to get back in the work force and feel decent again! Thank heavens we have lived to see this miracle happen. Were it not for the people who I love pulling for me and even pushing me to go on I doubt that I would have made it to the end of this horror story.


Eric

[nicole_1234]

I'm rooting for you Kim!

And Eric, docs told me with Harvoni it's different. It's pretty solid 99% at least if you are SVR 12 you will be SVR 24. (Didn't stop me from being anxious about it though).

Let us know how it goes!

[Sweetie1]

Hi, I just had my 6 month post 12 week Harvoni treatment test last week. Undetected and cured! I hope all of you reading this will have the same result, I think most will. Thank you Gilead Sciences!  Harvoni is one amazing drug. Best of luck to everyone, Karen

[Corey]

My EOT results are in after completing 24 wks UNDETECTED!

My ALT/AST went from 110/140 to 21/16  Dont remember ever seeing them that low.

I contracted HCV in mid 1970s and have a Fibrascan at 3-4

[gnatcatcher]

Four for four, hooray! CONGRATULATIONS to nicole_1234, Paleface, Sweetie1, and Corey!

[Bob V]

Hi guys
Just got my 24wk post lab back, not detected!

SVR 24 

[Bob V]

YES! CONGRATULATIONS to nicole_1234, Paleface, Sweetie1, and Corey![/b]

[Bob V]

Eric a big congrats to you too

[dragonslayer]

Hi Mug,

Several of us reached SVR24 and have posted it in the 4/12wk post treatment check in before this thread was ever started.    So, for the record, happy to report here that  I reached mine on July 8.

[Mugwump]

Thanks Dragon and Bob. And a big YIPEE to all who have already made the 24 week mark that once was considered the functional cure mark post tx.

KATIE should also be in this group soon as well! If you read this I hope you are finally starting to get your energy back. I know I still have a ways to go but it is definitely getting better each day as my liver slowly recovers. I just hope the flu shot this year is a little better than the last one though because I think catching a case of the galloping crud during the last 3 months of my treatment definitely messed things up for me to some extent.

Dragon,  I am fully aware of the stats regarding 12 week UND on the Harvoni trials. Part of the reason why I think this thread is good is because as time goes on some of us that had more liver damage really need to communicate.

Harvoni though a breeze as a treatment did really slow me down in the last part of the 24 weeks. So I guess the fight to save what is left of the liver is a very important part of the equation. This is why I think that a forum section for "life after HCV infection" might be a good idea. Harvoni has changed the equation and many of us that have suffered a high level of liver damage need to discuss how we deal with it long term because most of the medical community has not seen people in our circumstance before recover from HCV.

For instance my bilirubin is still elevated and I need to find out why and what I can do about it. All these things will be new to everyone because up until now it was quite rare for F4 liver patients to recover or be cured with GT 1a.

Thanks for the encouragement everyone.

Eric

[Bob V]

Eric
Good points.
 The 12wks I was on Harvoni sure slowed me down. I think what's different for me then some of the others was I felt fine before treatment. Two days post treatment I felt like a new person again but to be honest I think it was just that I felt so much better then I did on treatment. My endurance has been very slow to come back so I know know the Harvoni affected me more then I originally thought. On the good side I'm starting to get back to my pre tx endurance now.

I think your suggestion about where to go from here is a good one, especially for the people who have more advance liver issues.

Paul
I was thinking about you yesterday, congrats buddy.

[dragonslayer]

Eric, I dont think Katie's posted in about 10 days now which is unusual for her.. She should be reaching SVR24 real soon now, so Im surprised shes been so quiet.. Hope things are ok with her!

[dragonslayer]

duplicate post; text deleted

[Mugwump]

Eric, I dont think Katie's posted in about 10 days now which is unusual for her.. She should be reaching SVR24 real soon now, so Im surprised shes been so quiet.. Hope things are ok with her!

Yes this is not like her, hope she is fine. The one individual who has not posted to the forum for a long time that concerns me the most is Meredith. I hope she is fine, she was doing so well and all of a sudden no more communications. But I guess that is just the nature of the net these days. Perhaps as soon as she cleared the virus she wanted to forget she ever had it and I can't say as to I blame her!

[Lynn K]

Katie has posted a couple of times today

http://forums.hepmag.com/index.php?topic=1653.msg27326#msg27326

Do you know Meredith's screen name? I tried to look her up by Meredith but no luck

[Mugwump]

Katie has posted a couple of times today

http://forums.hepmag.com/index.php?topic=1653.msg27326#msg27326

Do you know Meredith's screen name? I tried to look her up by Meredith but no luck

Amj1951 and I see the profile is still active but she is not posting I really hope all is well with her and she is just waiting for the SVR joyful news like many here!

[Katie]

I just LOVE how you all are concerned about me and keep tabs!  That is very touching.   

I have a bit of a dilemma happening as my doctor of 27 years is closing up his office.  He had some medical issue and hasn't been in the office since end of March so he wasn't around when I finally cleared the virus.  I did send him a card a few weeks ago to tell him the good news as he was so upset and confused when I came back detected at the EOT,  He has been very important in our community, is an excellent doctor and someone I trust completely.  One of a kind.  I am just hoping he is OK, but I really need a doctor.  He sent a very emotional letter out, which I just received this week and did provide a list of doctors but several are not taking new Medicare patients, so I have been trying to sort all that out.

We are a small community here, with a good hospital, but it is difficult to find a long term family doctor as the turnover is high. 

I am feeling better, little by little, and other than being exhausted all of the time my big concern is my joint issue.  Wouldn't you know it, the first decent orthopedic doctor we have ever had left this month as well, so I am feeling a bit deserted!  I need to take care of this as my mobility is getting more compromised.

So don't worry about me as I am doing OK and just focusing on health care providers at this time.  I will return, hopefully full of vinegar and a Happy Dance for everyone.

Thanks again for looking out for me!

Katie

[Katie]

Free and clear and no longer a Bio-Hazard!  Yippppeeeee!

GT 1a
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2015 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)

[Bob V]

Katie
Congrats it's such a wonderful feeling to be HepC free.

PS. Love the pic.

[Mugwump]

Keep smilin' Katie! I hope to chalk it up to 24 weeks in Nov. But my enzymes are climbing. AST hit 43 and ALT is at 50. So I am sitting on pins and needles. I see the GI on the first of Sept and my 12 week post tx was undetected so most likely the spike in my reading is due to the case of the crud that both my wife and myself are currently going through.

I did pick up one hell of a cough that my wife brought home from work. It started out like the mumps with a tingle in the back of the throat and then spread to the lungs. I almost took my wife into emerg about 2 weeks ago it is a real 'turd and  caught many here by surprise. I have been coughing and finding it hard to breath for about 2 weeks non stop.

NO FUN AT ALL. The same bloody thing happened at 15 weeks into Harvoni when my wife brought home the flu that escaped the vaccine this year! She works in the Hospital and it is a horror show how the people who work there are at terrible risk for every bug that goes around. There is no escaping it.

However it goes I am going to sneak out and go fall chironomid fishing, I don't care if I freeze in my tent! I am going to give some more fish "sore lips" before I have my next VL test done.

Eric

[nicole_1234]

Yeah! Katie!! Big congrats to you!!!!

I'm getting a Fibroscan today and I'm a bit terrified. Hope theres very little scaring and I can just move on from this illness once and for all. I don't know why they didnt do this test before my treatment.

[Bob V]

Nicole_1234
Good luck with the scan.

[nicole_1234]

 thanks Bob!

 I posted this on another thread perhaps you can help ( of course I can always wait until next week to get an official rundown from my doctor)

I just did a Fibroscan and the nurse said I would have to wait for a week to get results from my doctor. But can anyone perhaps ease my wait by telling me if they know acting about the image I saw from it?

On the right hand side there were numbers next to 10 images all saying 1.2 to 1.8

In the middle was

VS Median 1.36

And below the

E median 5.1

Is the 5.1 my score?

[Katie]

Thanks Nicole, and no matter what the scan results, your liver is healing and improving.  I asked about a Fibroscan and my doctor said it wasn't needed as my ultrasound looked good.  I believe the scan is only accurate if you have progressive scarring.  I don't remember what condition your liver is in?

Good luck girlfriend.  It always puts a smile on my face when you post! (you too Bob along with others in our start up group)

Katie

[Katie]

Nicole:  Look what I found and it appears that you are fine...If these are the numbers you noticed.  The card picture wouldn't copy on this but the info is easily understood.  This is GOOD news for you!!!   

Fibroscan scoring card

Keeping this in mind, we can use the Fibroscan scoring card to convert  Fibroscan results measured in (kPa) into the Metavir scale F1-F4.

Located on the bottom of the Fibroscan scoring card is Fibroscan results in (kPa) measurements 0-75, more accurately Fibroscan results range from 2.5 kPa to 75 kPa. Between 90–95% of healthy people without liver disease will have a liver scarring measurement less then 7.0 kPa (median is 5.3 kPa).

A person with chronic hepatitis C and a liver stiffness more then 14 kPa has approximately a 90% probability of having cirrhosis, while patients with liver stiffness more then 7 kPa have around an 85% probability of at least significant fibrosis.

However,  research has shown Fibroscan accuracy in assessing lower degrees of liver fibrosis (F1-F2) is not as reliable compared to diagnosing advanced fibrosis and cirrhosis (F3/F4)
- See more at: http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html#sthash.u18PK6hC.dpuf

[nicole_1234]

Thanks so much Katie!

 Yeah that's what I'm wondering if the numbers I was looking at actually are the score or something else that I didn't understand. But it looks promising because even the higher one of 5.1 which is still less than 7 so that looks good!

[Katie]

Thanks so much Katie!

 Yeah that's what I'm wondering if the numbers I was looking at actually are the score or something else that I didn't understand. But it looks promising because even the higher one of 5.1 which is still less than 7 so that looks good!

and you are also below the median of 5.3.  I am sure this is the correct interpretation.  Here is the site I found and if you GOOGLE Fibroscan numbers there is a lot of information out there.

http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html

You ROCK Nicole!

[Bob V]

Hi Katie and Nicole.
Nicole I know nothing about the scans but Katie saved the day. Sounds like your # are good, congrats. Let us know when you get the official results.

[nicole_1234]

Thanks Bob and Katie. Doctor confirmed I have no liver damage. What a weird, painful and yet somehow wonderful journey I've been on! I feel so lucky to have come out alive (my father actually had Hep C too and died from it at age 67 about 10 years ago)

It's been a long hard road carrying this virus around for 15 years, but I'm free at last and all the wiser,stronger and more grateful for life and all its twists and turns because of it.

Thank you both for and anyone else on this site in helping me through this last little part of it. It's meant so much to have your support.

[Snuff HEP]

Hello to The wondering masses that have experienced the LOWS from inadequate hard knocks of past treatment protocol. I kind of figured it would be the almighty dollar that would force the day to Drug companies to invest in us.

Some 30 years later, which I suspect to be my infection duration. Numerous trial failures later with Interferon & Ribavirin in early clinical. Actually never finished combination old therapy. Had to stop before they killed me. Enzymes lapsed into the high 500 counts at that trial. Have Cirrhosis. Started Harvoni 24 week therapy 1st of April. Taken last pill today. SVR at 12 weeks. Will draw labs next Monday. Should be able to report in a week later or sooner. I pray for peace.

Looking forward to results and Blogging with you all!

[dragonslayer]

>>Taken last pill today. SVR at 12 weeks<<

Snuff, congrats on completing therapy.. Just a correction on terms..

SVR is  Sustained Virologic Response..   It is a term used to apply to Undetected status achieved Post Treatment  at specific finite intervals.. SVR4, for instance, means one had a blood test yielding a viral load that is Undetected 4 wks post treatment, etc, etc.

Therefore, it is impossible to be SVR 12 wks into a 24 wk treatment regimen.. In these cases, Undetected is not the same thing as SVR.

Best of luck as you move forward to those key SVR markers post treatment!

[Snuff HEP]

dragon, Yes I was undetectable at 12 weeks.  I did have a lab request for the 4th week, which I forgot to fill. I guess between all the anxiousness to get started & leaving my winter stop in FL. headed back North, I just missed the lab.

Head of Liver Management suggested that in my condition while achieving undetectable viral load at 12 weeks bolds well for me. They and I were pleasantly surprised. And they suspected I would achieve continued clearance. Hoping this to be true and allows myself a 2nd chance to heal the non-fibrosis portions in replicating new cell structure.

[Snuff HEP]

 
dragon, Yes I was undetectable at 12 weeks.  I did have a lab request for the 4th week, which I forgot to fill. I guess between all the anxiousness to get started & leaving my winter stop in FL. headed back North, I just missed the lab.

Head of Liver Management suggested that in my condition while achieving undetectable viral load at 12 weeks bolds well for me. They and I were pleasantly surprised. And they suspected I would achieve continued clearance. Hoping this to be true and allows myself a 2nd chance to heal the non-fibrosis portions in replicating new cell structure. So hoping the 24 week lab will result in SVR, Which would qualify the status to Post condition by a few days. Thanks dragon.
 

[Lynn K]

Hi and welcome

So when you say "hoping the 24 week lab will result in SVR" I am still not sure what you mean.

As Paul said SVR is after treatment has ended. SVR is a sustained viral response. So there is on treatment testing which may occur at weeks 4, 12 and 24 EOT (end of treatment) and then further testing post treatment for either SVR or possible relapse. Those times might include a test at 4, 12 and 24 weeks post treatment looking to see if you have achieved SVR 4, SVR 12, and SVR 24.

If you are still free of the virus at 4 weeks post the probability you are cured is about 98.5% and if you make it to still not detected at 12 weeks post that is a 99.8% probability of cure which most but not all doctors call cured some still prefer to wait for SVR 24 to declare you cured.

Good luck with your treatment
Lynn

[Snuff HEP]

Well maybe I was not clear enough. But what I am saying is I have completed the 24 week regiment of Harvoni this past Friday. $190,000 of Harvoni value later. I am about to receive my first lab test at completion, this coming Monday to confirm still undetectable. As I was also undetectable 12 weeks into therapy.

Yes I realize I have an additional POST lab to complete to reach a comfortable SVR, be it 12 additional weeks or 24 weeks POST as suggested on this forum.

Now I also have been consulted by U of M Liver Management team. And as I am aware right now as stated to me, shall I be 12 weeks POST SVR. I would be considered cured. Is there suggestion by any others here that we must adhere to a longer POST SVR all the way out to 24 weeks?

Note I have not been requested to do SVR Labs 4 weeks POST, only 12 weeks. Is this common for most? As I noted it seems some of you are suggesting 24 weeks POST for real cure? What are the published POST duration qualifier, or is it still subjective to whom may be treating you?

[Snuff HEP]

OK a little research and possibly answered my own question. From BC Center for Disease Control: http://www.bccdc.ca/NR/rdonlyres/78F4E7D9-5BF2-4410-BDEE-ED31AADF0A2A/0/CPS_HepatitsC_ViralLoad_Rec_20150609.pdf

o A viral load at 12 weeks post completion of all treatment should be done to determine if a SVR has been achieved. Viral loads obtained 12 weeks after treatment have been shown to be essentially equivalent to a 24 week viral load assessment for SVR (Yoshida et al. Hepatology 2015).

o A follow up viral load performed at 24 weeks after completion of all treatment may identify approximately 0.5% of individuals who are late relapsers. Performing both a week 12 and a week 24 post treatment completion viral load assessment to verify SVR is appropriate.

I guess I will have that discussion with my Doctors.....

[Mugwump]

OK a little research and possibly answered my own question. From BC Center for Disease Control: http://www.bccdc.ca/NR/rdonlyres/78F4E7D9-5BF2-4410-BDEE-ED31AADF0A2A/0/CPS_HepatitsC_ViralLoad_Rec_20150609.pdf

o A viral load at 12 weeks post completion of all treatment should be done to determine if a SVR has been achieved. Viral loads obtained 12 weeks after treatment have been shown to be essentially equivalent to a 24 week viral load assessment for SVR (Yoshida et al. Hepatology 2015).

o A follow up viral load performed at 24 weeks after completion of all treatment may identify approximately 0.5% of individuals who are late relapsers. Performing both a week 12 and a week 24 post treatment completion viral load assessment to verify SVR is appropriate.

I guess I will have that discussion with my Doctors.....

Much of the svr confusion is because the older treatments had much higher failure rates post treatment. Many who were undetected at end of treatment would relapse after various periods of time. The most common was a quick relapse after 4 weeks. So the standard of testing became in 4 week intervals. But there were also many who went for 12 weeks and then suddenly relapsed but very few who relapsed after 24 weeks post treatment. Less than 1% of patients who reach 24 weeks relapse regardless of which treatment they were on.

This is not the case with Harvoni. So the testing post treatment seems to vary because of the way testing was done prior to Harvoni. I am fortunate because my GI has written me a 24 week post treatment requisition for me, but because my 12 week post treatment test was undetected then I have better the 99% chances of not having a relapse. So there is very low probability that I will relapse. The facts that you linked to are the most current statistics but most of the clinicians agree that until a greater cross section of the population gets treatment with Harvoni we should be cautious and still perform the tests the way they were done for older treatment regimes.

I suspect that as this treatment becomes more common then 12 weeks of svr post treatment will become the point at which specialists declare the individual cured but it makes sense not to jump to this conclusion until more results come in for people who have been treated for 24 weeks with Harvoni in the general populace.

You are undetected at end of treatment and that gives you a better than 96 percent chance of reaching 12 weeks without the virus returning. I will take those odds in Vegas any day of the week!

Congratulation on snuffing out the dragon and all the best in healing the damage it did.

I am just discovering the extent to which my rock of a liver has been effected. My fibroscan was 25 so there is quite a bunch of damage done and being F4 means that most likely my quality of life will suffer.

Little things like not being able to climb up and out of river canyons the way I did only a few years back. But I am going to push the limits again now than I am free of the bug! I will not roll over and blame everything on HCV and a bum liver or sit around and mope.

Eric

[Snuff HEP]

Thanks Mug

I kind of rationalized that was the case to look back to the old clinical protocol until more subjects on Harvoni were past the 6-month post.

Similar Liver damage as you, but I will fight through it. Not yet willing to roll over or grasp for excuses. Got too much Living to catch up with...........

[Lynn K]

Some get checked at 4 weeks post most don't I asked to be tested at 4 weeks because of my treatment history and especially because I relapsed last year after being not detected while taking Sovaldi and Olysio for 12 weeks but was found to have relapsed at the 12 week post mark.

To me it seems the doctors who are up to speed with the new treatments are more inclined to call SVR 12 cured but as was said the old treatments were not considered cured until SVR24 so many still hang onto that.

I am going to be tested at week 24 post because of my history we just really want to make sure I am really cured.

Good luck

[Mike2]

Hi All,
12 weeks post Harvoni Geno 1 CURED!!!
Good luck to all!

[gnatcatcher]

Bravo, Mike2!  Have a GREAT life!

[mario555]

Mugwump. It was funny to read about your ability to "climb out of Canyons and stuff... I had similar problems where I told my wife I was expecting a healthier life after being declared SVR 12. She mentioned that I am old! (older?)
My life over the last 15-20 years revolved around my disease. All my ailments were from the disease (or so I thought). I forgot about my growing older and the decrease in physical strength that went with it... I just turned 60 and I can't climb out anymore, my strength and muscle mass has decreased and I have to figure out the rest of my healthier life. So don't worry too much, take the well travelled path, it's less risky! (ha, ha!)
On another subject, I was still bothered by tinnitus 20 weeks post treatment. 5 days ago, I flew 18 hours on 4 differentsegments in a long trip. Lo and behold, my tinnitus is f...ing gone! A 100% cure! I am left with a minimal amount of dizziness and that's it! Have I found a cure for tinnitus?
t

[Mugwump]

On another subject, I was still bothered by tinnitus 20 weeks post treatment. 5 days ago, I flew 18 hours on 4 differentsegments in a long trip. Lo and behold, my tinnitus is f...ing gone! A 100% cure! I am left with a minimal amount of dizziness and that's it! Have I found a cure for tinnitus?
 

That is great to hear!

OH that was bad!!

I am not going to give in to OMS (old man syndrome). I am finding the tinnitus comes and goes and increases with sinus problems but it has backed off to the point where it is no where near as bad as it was for the last few years. I remember flying all over Northern Ontario years ago when I worked for the MNR there in my twenties. It was in an old DC 3 and it took me quite a while to be able to hear properly again. So series of pressure changes definitely can effect the inner ear long term.

Perhaps the process of  pressure changes to the ear helps to stimulate and strengthen blood flow to the membrane the same way exercising the muscles do. You might be onto something, it would be really interesting to do experiments to quantify the changes and see if it is actually possible to "exercise" your ears! I know that if I blow my nose a few time carefully the tinnitus eases off for short periods of time so there most likely is something to it.

Cheers
Eric

[Deborah]

Cured!  Diagnosed in 2008, did 8-wk treatment of Harvoni and finished 2/15.  Undetectable since wk 4.  Just got labs for 6-mo post treatment (SVR 24), still undetectable and doctor declared my treatment a success.  Now the word is mine - cured!   

Geno 1
age 61, female
no liver damage
enzymes normal throughout
no other treatments done
no major side effects to Harvoni

[Mugwump]

Keep rockin' Deborah! It is great to see those who went through only 8 weeks go on to SVR 24.

Us poor characters who have greater liver damage seem to have more of a rough go of it. But knowing that others will never reach the F4 status due to this horrendous disease because there is the potential to cure HCV early on before it does serious damage is a wonderful thing.

I am still having a bit of a hard time, my joints ache and the last bug that got me almost put me into the hospital with pneumonia. But I am not going to call this side effects because I have a liver which is cirrhotic and hopefully over time it gets a little better. But there is still some discomfort and biliousness going on so I will just consider myself to be a bilious ol' fart and leave it at that!

All the best in your future life without HCV, big  and hugs
Eric

[Snuff HEP]

SVR at 1 week post of 24 week treatment. Received Lab results today....Undetectable. Next milestone Post 3-months lab in Dec.

[Bree]

Right on Snuff!

[Mugwump]

SVR at 24 weeks. Received Lab results today....Undetectable. Next milestone Post 3-months lab in Dec.

That is wonderful! It has been a long a difficult road for those of us who needed 24 weeks of tx. I am sure you will see svr 12 and cured!!! The waiting is really hard and I completely encourage you to growl, grumble, fart and in general be nasty until you finally hear the words CURED.

It does not really help things to go faster but sometimes pitching a rock through a window is the best solution IMO. But be nice to the ones you love and yourself.

Let us know how you get along as you get over the treatment, I am having a bit of a rough go of it but at least I can finally see an end to feeling like crap all the time the way I have for years because of compromised liver functions.

All the best
Eric

[hkillinger99]

Tomorrow I am going for my 12 week post Harvoni blood work.  Hopeful that all will be clear and this day seemed to take FOREVER to get here.  I am feeling better, bit by bit, with less exhaustion than before.  Unfortunately, my RA seems to be raging as well as a significant decline of my eyesight.  Likely not harvoni related, simply age related (only 43).  I am grateful to everyone here who continues to share their hope and as soon as I have the results, I will be back.  Live well and be blessed!

Heather

[Mugwump]

Tomorrow I am going for my 12 week post Harvoni blood work.  Hopeful that all will be clear and this day seemed to take FOREVER to get here.  I am feeling better, bit by bit, with less exhaustion than before.  Unfortunately, my RA seems to be raging as well as a significant decline of my eyesight.  Likely not harvoni related, simply age related (only 43).  I am grateful to everyone here who continues to share their hope and as soon as I have the results, I will be back.  Live well and be blessed!

Heather

Heather I strongly suspect that as our liver becomes free of HCV it is also stronger and produces more hcv antibodies. This could very easily explain why some of us are experiencing strong post treatment rheumatic effects. I have had pronounced myalgia, pain in my shoulder joints, and noticeable negative effects upon the quality of my vision. And some more pain in my swollen finger joints especially in the cold. BUT it is currently easing off and I am back at playing my musical instruments (classical guitars) with more ease and much less strain and pain!

My glasses are not quite good enough for reading any longer but I will wait until I am at least 6 months post tx before I renew my presciption! My eye sight was deteriorating even before I went on Harvoni in late November 2014 so my six month post 24 week tx is not until Nov 3.

All the very best reaching SVR 12 girl!!!! I am sure you are going to make it. The waiting till you hear the words UND at 12 weeks post treatment is the hardest part by far of this treatment. , I know I was quite short tempered during this period and had to do things to release the tension. Above all be nice to yourself and all those you love!

Like I have said to others throwing a fit or doing something off the wall does nothing to help shorten  the waiting but anything that might release a little tension at this time is really important. I know if I had not rebelled and gone fishing and snubbed my nose at some people the waiting would have been much worse. However do not get too mad at others if they seem to be less than understanding about what you are experiencing. They certainly cannot understand what it is you are going through and quite often telling them will just make them bored because they truly do not understand.

I was excited to tell others that I was UND at EOT (undetected at end of treatment) in fact I wanted to shout out loud and sing about it. That is why this forum is great we all understand what we are all going through.

What did happen however was a downer when I told some people who were less than understanding and my excitement brought out some detractors that accused me of being high on something, some people can be complete jackasses at times, especially about this disease they assume you use drugs and write you off as a person!

However

NO PROZAC FOR THIS CAMPER PERIOD even though some others have suggested I should go on it!  Or with my new found spunk and enthusiasm for life ask me if I forgot to take my downers. But I have good come backs to this, but most times just thumb my nose at the comments considering the source of these comments are mostly from people who are walking downers . I just tell them " I don't need to take a downer, I just met one!" and then walk away.

All I am saying is don't let the wait get you down or let the usual downers get to you! You deserve the peace of mind that final freedom from this disease can bring, as do we all.

Hugs from afar and I truly hope your symptoms post tx are easy to deal with and they dissipate rapidly and you can become young at heart again like I have!
Eric
 

[KimInTheForest]

Well said, Eric. And good comeback to the people who think you should take downers. I may 'borrow' that one myself for certain people.

kim

[Momof3]

24 weeks post Harvoni.... Undetected!! CURED after only taking Harvoni for 8 weeks! What a ride!

[KimInTheForest]

24 weeks post Harvoni.... Undetected!! CURED after only taking Harvoni for 8 weeks! What a ride!

Fantastic, Momof3. Congratulations! And tremendous that you were able to do it in just 8 weeks of treatment. Enjoy your New Life.

kim

[Momof3]

Thank you kimintheforest! It amazes me that I did it in 8 weeks vs when I first looked into treating. I am so glad I did my research and chose the gamble to wait!

[slats1056]

 Hooray for You Momof3. Great news for sure. Trusting in Your instincts usually pays off. In this case , wonderfully!

[Mugwump]

Momof3 it is wonderful to see those who have not progressed very far in the disease clear the virus. Even more so to know that you will not spend the rest of your life constantly worrying about infecting others.

Others who are not infected cannot know about the inner voice we have that grabs us every time we have a little cut or have intimate contact and the list goes on. They cannot know what it was like to fear a misstep or accidental transmission of this disease.

So for us it will be difficult to distance ourselves from having the virus, there will be flash backs and memories of the torments of concern that ruled our lives. Getting over having had the virus is a new task that many of us with this strain of HCV thought we would never have to deal with.

I wish you peace of mind and joy in the knowledge that you do not have to be constantly worried about infecting others any longer especially the ones you love the most!

As a father who had HCV the constant worry about infecting my wife, child and others ate at me for so many years that it became like a millstone around my neck.

All the best
Eric

[hepboy1]

hello to all im wondering to those suffering side effects   or not post  harvoni are any  of you taking supplements ?I just started and was trying to see if coming out the back side taking some cleansings or herbs   might hasten recovery                               infected 1991?  hep c no 4   viral load  86thousand   stage 4 cirrhosis  started harvoni 2 hours and 8 minutes ago

[marybarter]

My doctors did not allow me to take most supplements.  It's important to ask the Specialists because some of those herbs, etc., interfere with the efficacy of Harvoni.  Further, there is a list of herbs that are harmful to the liver.

[mario555]

Hepboy1. Really sorry to intrude but why in hell would you take anything that could interfere with Harvoni? If there would be herbs or whatever that could better the treatment, don't you think Gilead would have added it to their pills already? For the makers of this medication, it's a fight to death with competitors! If anything better could be added, they'd do it!!
They say to take the pills wwith a normal diet and they warn you about interactions with some "herbs" that might interfere. A normal diet forAmericans is hamburgershamburgers, Sheppard pies, apple pies, etc... What you are risking in introducing herbs is to relapse and then,your up the creek without a paddle!
Do as they say and keep busy and let the pills do their work. Don't interfere!
In any case, I did 24 shitty weeks and thank you Lord, it seems to work with my SVR12. Good luck to you with your treatment and be patient and go have a pizza on me!

[hepboy1]

IM WANTING TO HERE FROM ANYONE WHO DID TAKE SUPLEMENTS AS WELL SO FAR IVE FOUND 2 WHO TOOK MILKTHISTEL WITH HARVONI  BOTH HAVE  BEEN CURED BOTH CLAIM NO OR LITTEL SIDE SFFECTS , ONE SAYES THEY WERE NEGATIVE THREE WEEKS OUT,  SO LETS JUST SAY IM DOING RESEARCH  OH  IT WOULDNT MATTER IF EATING DOG POOP CURED YOU IN ONE DAY THEY WILL NEVER TELL YOU AS LONG AS THEY GET 12OO A PILL  FOR THEIR ELIXER   sorry my cap locked  wasn't angry  I just see how so many after they are cured end up with a rash of problems (new ones) out of th e frying pan into the fire  im ganna do what I gotta do to avoid that , who wants to get cured just to get billary tumors  or memory loss or crippling back and leg pains ?  or endless fatigue? if all one needs is a little milk thistle to clear some of the rubble out or protect a little? im just looking for a third person to come forth and admit they took their thistle  during treatment  sides if it didn't work or threw a wrench in things the first test would show so far it looks promising  not that I would encourage anyone to go a differing direction  just trying to hook my self up with an edge  I don't need to be turded out  after the cure

[slats1056]

 Personally, I stopped ALL supplements during 12 week treatment to give the Harvoni every chance needed to do its job. Had some bad sides but persevered with only a few Advil & Aleve to combat the Migraines and joint pains. Small price to pay when You think about the possibility of interfering with these high cost meds. and the problems so many have had getting them. Just finished My 12 weeks waiting to get My EOT blood work done next week. I will worry about supplements later. Your best source of info. is usually the specialty pharmacist on info. & recommendations for what to take or not to take. Be sure it is the specialty PHARMACIST that You talk with. Most regular pharmacists are not versed in the ways of these antivirals we are taking.
 Good Luck & Best Wishes on Your treatment.

[hepboy1]

thank you be blessed and healed

[Lynn K]

Hepboy1
there is no evidence of efficacy of any herbal "treatment" including milk thistle. you are just throwing money away it does nothing.

The recommendation is if you don't HAVE to take something while on treatment don't take it.

What you do afterwards is your choice but please don't mess around with your treatment

[hepboy1]

there are 2 on here who did take milk thistle all the way threw treatment  one viral load zero in three weeks  the other also zero and  after treatment  one had no side effects the other minimal , no post punishment symptoms  I think they are on to something but you cannot kno unless someone sacrifices , look how everyone has these endless after  post symptoms im beginning to  think the dosage is too much for some people who cant clear it fast enough  just from reading so many stories  but im no doctor   im only concerned anyway about me making it threw im a hypersensitive  with old detox damage  from over dosing  on Tylenol 

[Lynn K]

Personally I had few side effects from treatment just became rather anemic from the Ribavirin which resolved in 10 days after stopping the meds and I have no remaining sides from treatment I feel fine as a 57 year old with cirrhosis.

It is each individual's experience based on their own health and sensitivity you present no evidence of any effectiveness totally anecdotal and those folks I believe would have had no different experience with or without milk thistle

The people who post in a discussion about post treatment issues of course that is what you will see there. But the majority of patients have little to no posttreatment problems and for those who do it is more a result of their medical condition than from the medications for the most part.

[Katie]

hepboy1:  I took milk thistle regularly for 10 years along with other liver helping supplements and had no noticeable liver damage from Hep C so I think they worked in protecting my liver but then I have no control for certainty.  I eliminated all supplements except my Vit D as I am right on the low edge and it took a lot of work to get it up to that level.  I also took a vit B complex as needed but rarely took it while on Harvoni as I felt so good during treatment.  I would be extremely cautious with any kind of supplement blends such as herbal tea or liver or gallbladder flushes etc as it may have something, such as St John's Wort that will interact with Harvoni.

We each do what we need to but I would run it by your doctor and/or your pharmacist before doing something which could compromise your treatment.  Be sure to stay hydrated.  I think that is a key.  This treatment affects everyone differently, so I wouldn't assume what worked for one would work for all.

Good luck, be good to yourself and keep us posted!

Katie

[Katie]

Actually Lynn, I am in perfect health and take no prescribed medication, had an easy time, in fact GREAT time during treatment and now feel worse than before treatment in many ways.  Some issues are gone but my energy level is half of what it used to be and I do place it on post treatment.  My liver isn't damaged, my thyroid is in good shape and they even tested me for toxicity, for everything.  BP, lung function, O2 level, kidneys, everything is perfect except some of my joints which I damaged doing hard physical work.

I have always been really sensitive to any medication and rarely take anything, including over the counter) so I just think it affected me in a different manner and know it will balance out over time.

Glad to hear you are doing so well.  You had a difficult treatment history and are a strong lady whom I admire!

Katie

[Lynn K]

Yeah we all react differently to meds and a few do appear to have had a reaction to these newest treatments like yourself some have pre exisying conditions known and sime nay have been the and unknown and some like you are sensitive to medication in general but I believe for most that is the exception.

Hope you get to feeling better soon I just wish they had invented Harvoni in the 90's before I had cirrhosis but it is what it is and life goes on :-)

[teasker]

Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim

[dragonslayer]

Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim

Teasker, I had a similar experience to yours.  Stage 0-1 by biopsy, treatment prescribed for 8 wks, minor to no side effects, and quick insurance approval with no appeals needed.

I think its the luck of the draw whether you get an 'enlightened' insurance company who sees the benefit of keeping overall costs down by treating on-demand rather than waiting until more irreparable damage with increasing health complications sets in.  I have a local Connecticut company who was just sensational. I also dealt with a specialty pharmacy who my doctor used to manage all approvals, denials, etc. .And when I asked them why I was (shockingly) so quickly approved, their answer was, 'why wouldnt you be?!'  They told me theyve seen very few denials.. 

So, its both amazing and depressing how diverse everybody's experiences have been relative to the way their insurance companies handled or mishandled their whole treatment experience.   Wish I could say I was particularly prescient in choosing mine, but the truth is, I chose the company I thought had the best plan for me; Harvoni wasnt even on the formulary at the time I had to make the selection.. LUCK!

[Bree]

Good Morning-Just thought i would chime in with my experience
Age-53-Male
Diagnosed-1990
TX naive
Started Harvoni-1/26/15-8wks of tx
1.5 mil viral load
4 wk-Detected but less then 1.8 and less than 15 for Quantatative & RNA
12wk-undetected
24 wk-undetected

I experienced no side effects during tx or after. 
I live in WI and when i called my insurance company to thank them for allowing Harvoni they were kind of shocked and said "Why wouldn't we allow it?"  They indicated the would authorize the medication for anyone who has the disease even if just diagnosed yesterday.  They do NOT want folks to get any sicker then they already may be.  They really seem to get it that paying up front for Harvoni is cheaper in the long run.  I have Security Insurance. 

I was pretty luck in that I only have level 1 scarring.  I suspect no alcohol for the past 20 yrs helped.  Well wishes to all my brothers and sisters of the struggle!  Tim

That's awesome Teasker!  Congratulations!  And, hats off to your insurance company for caring and curing!

[Lynn K]

Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[mario555]

Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!

[Lynn K]

you guys are that advanced?

Actually this is the longest I have ever waited for HVC RNA test results I had the blood draw on 10/19/15 so 8 days

Stay loose my treatment brother!

[Bree]

Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yea Lynn!!!

[gnatcatcher]

Lynn, so glad you are now officially really really really FREEEEEEEEEE!

Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!

Mario, back when a Canadian postage stamp cost ten cents, wasn't the joke "five cents for the delivery and five cents for the long-term storage"?

Gnatty

[dragonslayer]

Lynn.....


WHOOPEE!!!!!!!!!!!!!!!!!   

[chino1969]

Lynn K,
Great news.  I have followed your threads as our situation is very similar.  I too relapsed in 2014 with the 12 week Solvadi/Olysio combo.  I completed 24 weeks of Harvoni on 8/9/2015.  Have been SVR all during treatment and 5 weeks EOT.  My 12 week EOT comes up 11/2/2015. 

Congratulations.  Now it is time to get on with the life that has been in the 'pause' mode for too long.

[KimInTheForest]

Lynn K. This is a wonderful news! Congratulations to you! I am very happy for you and you sure needed a break! I don't expect my tests results before Christmas even if I started before you! In Canada we use mules and smoke messages to send out news!!

Or we let beavers slap down a morse code message with their tails smacking the lake surface, while the overflying Canada geese decode the message and present it as semaphore with their wings when they touch down on the next lake, so those beavers can propagate it further until it reaches its destination... Another time-honoured news delivery system in Canada.

CONGRATS on your SVR24 Lynn!

kim

[Lynn K]

Or we let beavers slap down a morse code message with their tails smacking the lake surface, while the overflying Canada geese decode the message and present it as semaphore with their wings when they touch down on the next lake, so those beavers can propagate it further until it reaches its destination... Another time-honoured news delivery system in Canada.

CONGRATS on your SVR24 Lynn!

kim

Too funny Kim lol

and thanks to all

[Philadelphia]

I've said it before but I'll say it again - very happy for you Lynn!

[Butterflykisses]

Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Congratulations Lynn.  So Happy For You, Time Celebrate.
Btw, I watched you Skydiving on YouTube, Very Cool, something I've always wanted to do.

Wishing you all the Best.

[Lynn K]

Thanks again Philadelphia!

Thanks Butterfly!

I am just a wing nut that's all lol

[Mugwump]

Fantastic Lynn!

When I get the news I am going to smother some buckwheat pancakes in Maple Syrup with a tonne of butter. For some reason I have a hankering for a that and a real malted milkshake! I guess it is a memory from my childhood when I was ten and went ice skating on Lake Superior and that is what we had that morning.


 

[Lynn K]

Thanks Mugwump,

OK  well I will be taking a vacation next spring to Cancun I guess they may have pancakes there since I can't drink the tequila!

[Bree]

Now I want pancakes and I don't think I can wait until 12 weeks post test

[KimInTheForest]

When I get the news I am going to smother some buckwheat pancakes in Maple Syrup with a tonne of butter. For some reason I have a hankering for a that and a real malted milkshake! I guess it is a memory from my childhood when I was ten and went ice skating on Lake Superior and that is what we had that morning. [/size]

It's been YEARS since I've had buckwheat pancakes. Yum! I'm going to go get some buckwheat flour and make some!

kim

[slats1056]

 You guys are making Me hungry again, I'm a big time fan of Breakfast just about any time of day. Pig fat, flap jacks, and eggs sunny side up is My breakfast of choice. The grandkids used love it when I told them that's' what I was making when they stayed with us. I am going to have to check into the buckwheat pancakes!!! Real butter too, non of that margarine or substitute stuff for Me. Wish it wasn't so late or I would go ta the store and have them in the Morning
 

[BattleTheBeast]

Guess who got their 24 week post treatment results today?

SVR!
SVR!
SVR!
SVR!
SVR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WOOHOO!!! CONGRATS LYNN!!

Its about time!!! I just had my blood drawn for my results, lagging a couple of weeks but hope to have my official SVR24 by the end of the week. Waiting to go in for my every 6 month MRI right now and still fighting with some S/O side effects or maybe Harvoni or maybe 30 straight weeks cured me and left me a mess

[Lynn K]

Thanks Mel good luck on th eSVR 24 test but I bet it will be great after all you have been through.

I had my 6 month abdominal Ultrasound and AFP test also. So far everything is looking AOK no sign of HCC.

Next spring annual upper-endoscopy and 6 month ultrasound AFP and whatever other blood tests my doctor wants along with an office visit. Guess that is the plan going forwards as far as the eye can see.

Hope you get past your sides and feel better every day

[Mugwump]

Nice to hear from you Mel. I am sure you have done in the monster once and for all.

Saw my regular doc today and told him about all the post Harvoni hangover effects. He concurred and said that it is not possible to quantify the possible effect whether or not some of us are experiencing a sudden boost in the production of unnecessary HCV antibodies. But completely agreed that this effect might well explain why so many of us feel like we got hit by a train post treatment given that nothing else seems to be obviously going on.

So the logic that some of us might actually be having a kind of "knee jerk reaction" with our immune systems is the best explanation because everything else is fine and there is no indication of any other causes for what I am going through. Same as Katie and others.

One thing though I am sure as hell going to get the flu shot this year because last year it really sucked getting sick as hell right at EOT with Harvoni!

[ma snart]

WOOHOO!!! CONGRATS LYNN!!

Its about time!!! I just had my blood drawn for my results, lagging a couple of weeks but hope to have my official SVR24 by the end of the week. Waiting to go in for my every 6 month MRI right now and still fighting with some S/O side effects or maybe Harvoni or maybe 30 straight weeks cured me and left me a mess

Just got Helens 24 week post results, NOT DETECTED    Dr. says CURED    woohoo

[BattleTheBeast]

Just got Helens 24 week post results, NOT DETECTED    Dr. says CURED    woohoo

WOOHOO!! CONGRATS HELEN!!

Another win for the good guys!!