Post Harvoni feelings

[chino1969]

I finished 24 weeks of Harvoni on August 9th.  It seemed like I had more energy while on treatment than now.  My blood pressure, while on Harvoni ran high.  It is now normal.  I'm feeling a bit fatigued, am dealing with a whole new set of feelings.  A bit depressed, a bit melancholy and am adjusting to these new sensations.  Am waiting on my EOT blood work.  I was SVR 4, 12, & 16 weeks.  Now the wait begins for the 12 week EOT results which is a bit unnerving.
 

[Mugwump]

Just hang in there is the best advice I can give you. I hope that you are getting monthly liver tests? If you are in the normal range for most of the liver panel then don't sweat it. I am sure that if you go for a blood test and it is out of whack then your DR will call for another VL test immediately.

It is cruel waiting for the results. But the 12 week grind seems to be the only way to ascertain certainty. Do not sweat it if your bilirubin goes up a little. If you are consuming any alcohol though your liver panels might be not a good indication of whether or not the virus is clear and any consumption will make it very hard for a doctor to make accurate clinical choices.  Some doctors do not do liver panel test on those who chose to drink during tx or afterwards for this very reason.

So I would suggest not drinking any alcohol at all during this time frame so that the liver tests are not skewed by the damage done by alcohol because the damage it does results in the same liver test results as does chronic HCV infection!

You will do just fine I am sure, I used the time to fish, study music and whatever including work the uncertainty is difficult but is much easier to deal with if you keep yourself occupied with something else other than HCV infections worries we all have become accustomed too!

Eric

[chino1969]

Eric,
Thanks for the mood boost.  I haven't touched a drop of alcohol in years and don't intend to.  I'm still working so that will help with the passing of time.  Perhaps it is the unknown at this point that has me on edge. 

[Mugwump]

Eric,
Thanks for the mood boost.  I haven't touched a drop of alcohol in years and don't intend to.  I'm still working so that will help with the passing of time.  Perhaps it is the unknown at this point that has me on edge.

For sure the waiting game is a royal PITA but don't let it get you the way I did! During the waiting game I almost drove my wife to pulling a Lizzy Borden LOL!!!
And every little ache and pain had me worried as to if the virus was still eating me up inside! That is why the monthly liver panel while you wait is important. If the virus returns and starts to do damage it will most likely happen sooner than 12 weeks and the enzymes should steadily improve or stay very stable over the next 12 weeks of waiting.

Cheers
Eric

[gnatcatcher]

Eric,
. . . Perhaps it is the unknown at this point that has me on edge.

chino1969, that's highly likely to be the case. Also, while on treatment, you were actively doing something (taking the medicine each day). The switch from doing to being can be unsettling. (Cancer patients who have finished their chemo and/or radiation experience this, too.) As Eric suggested, you can occupy your non-working time with doing things that give you pleasure. Another alternative is to explore these unsettling feelings with open curiosity: what can you learn about yourself during this time of waiting?

Gnatty

[chino1969]

Eric & Gnatty,
You both made excellent points which I agree with.  During treatment I knew the virus was being eliminated.  Now, I'm in the gray zone.  I understand it is part of the process and do appreciate your input(s) & experience.

[nicole_1234]

 I definitely had that during the waiting game, depression and anxiety about the whole deal of waiting to know. But what is surprising me is that I'm still feeling this way and I just got my 24 post TX results and I am still clear. I thought I should be elated.

 Some things of happened in my life over the last few months like a break up with my boyfriend of the last three years and I suppose I'm a bit melancholy that I'm not able to share this moment with him. But it brings up a lot of stuff from my past suffering with this illness for 15 years. Thoughts of what could've been a different life, how it effected my work and relationships. Sorting through some of the emotional wreckage and trying to let go.

I don't know, I'm very grateful and I know I have so much to be thankful for.  I just thought I'd feel this giant weight lifted off of me and it's not as dramatic as I expected it to be. It's just kind of like oh well now that's done .  Is there anybody else that's been confirmed cured and feeling this way?  is it something that will slowly get better?  I'll feel the disease really let go it's grip over me ?

[Phil]

I think that's a natural human experience after anything we have invested significant time and energy into. That anti-climatic experience. Like graduating from university, graduate/professional school. Yeah ok, what now? That's a pretty universal feeling. It never feels as you imagined. That's just life, never ever as you imagined.

Just remember the recovery period post treatment can be prolonged. I felt horrible the first few weeks after completing a 12 week course of Harvoni. It's a big adjustment for the human body. Especially for those of us who have been living with hep c for 20 plus years. My current guess is that full recovery may take as long as 6-12 months for some folks. Perhaps significantly less for the young with more recent infections and no other medical history. Could be even longer for more complex cases. For those of us who are older and living with this disease for many years, I would be willing to bet the 6-12 month guess will be close.

I myself finished 12 weeks of Harvoni 14 weeks ago and just the last several weeks am beginning to feel what I remember as being normal. Although I had mostly forgotten that feeling. I'm not saying it will take specific people 6-12 months to recover, just that it would not be surprising. The truth is we do not know. The human race has never before experienced mass cure and recovery from a chronic viral infection. This is totally new territory, medically. By the way, I just received my test confirming SVR12 yesterday.

Phil

[Patience]

Today I am 4 pills away from the end of 12 weeks of Harvoni. From reading posts on this forum I am realizing that this is no "now you have it, now you don't" kind of experience. If I am lucky enough to achieve SVR, there will undoubtedly be repercussions I won't be expecting. Not really surprising, since for probably decades I have been in a reluctant partnership with a dreaded virus that has colored my vision of pretty much everything for every day on every level, even when I thought I wasn't thinking about it. For me, it's been a kind of "I will tolerate your presence, if you will stop short of killing me" sort of relationship, as I picture Pac Man-like creatures gobbling away at my good health. This strange symbiosis has been some what of a "precious bane" for me in that while being an erstwhile unstoppable destroyer, Hepc has also been a provider of excuses for stuff that I didn't want to do: "Oh, no, cant do that! I've got Hepc and it would make me too tired, too nauseous, too .....whatever", as well as for things I did want to do: "Oh, well, I've got Hepc - I'm not going to live forever so I'd better go ahead and do this!" Once, and if, this is really gone, (please, please!), I will have to face the fact that I have no more standard excuses for what I do or don't do. Of course, since I'm old (74), I can maybe draft age into that position -( job description would be similar: keep the excuses coming, and physically it does a number of the same things: aches, fatigue, fog, etc. - only hopefully much slower. At any rate, this is a challenge I am ready and eager to face and one of the REALLY good things about it is that I know I'm not alone in this struggle. Thank you to everyone who supports and encourages through posts here. May we all endure and prosper!

[nicole_1234]

Phil that's HUGE news! Congrats to you!!!!!!! And thank you for the words of encouragement. Yes I'm sure it's pretty normal to have this little grieving period. I suppose it's like a small scale PTSD or something.

And @patience good luck to you! I hope you'll experience a newfound energy when your tx is done.

[Gunner]

Now the waiting game takes place. 

EOT (Harvoni & Ribavirin) was 8.22.15, First day off I felt great but second day I literally slept the entire day away.  Today I feel much better,  Weeks 4,8, and 12 not detected.  During the second month I was (as my wife calls it being dramatic).  Is this stuff working / I don't feel anything and this hurts and that ached - LOL - As far as I am concerned, after living with this for 20 plus years.  I am going to believe its over, life goes on while we wait for conformation with an SVR 12 weeks from now...

[beto]

This is an interesting perspective.  I began July 11 on what I believed to be a 24 week course.  In fact, I was sure of that.  Well, my doc asked me yesterday, if I wanted to discuss a shorter course because I am a rapid responder (thinking it was 24) I'm like no way Jose.  I said "you you mean only 12 weeks" and he said "no, you are on a 12 week, I was talking 8 weeks."  No Way.  Well I argued with him that I was cleared for 24 weeks...only to have the the pharmacist back this conclusion.  My point is that not only do I not want to take a chance of relapse, but taking it gives me a sense of security.  It gives me a feeling of support, especially now that it is working.  Ending the Harvoni relationship Feels like having a leg kicked out from under you.  Now listening to the post sentiment, I have an anticipation of what you are going through. Also, we may have developed a symbiotic relationship with the disease and replaced it with this incredibly hopeful drug and the experience that it is saving us.  Then suddenly, we don't have hep-c anymore or the miracle drug.  40 years hep-c has been my bed-fellow.  If post treatment wait is not a major life changing experience...what is?  This for some of us might be the single most "emotionally charged" experience of our lifetimes.

[nicole_1234]

Beto, if you have cirrhosis you should absolutely stick to the 24week protocol.  if your doctor says that you should change the length based on your response rate he or she is misinformed and I would advise you to get the paperwork from Gilead that says 24 week treatment is recommended for people with cirrhosis.

 As far as I have read with Harvoni, the response to it while you are on treatment is not important. Almost everyone clears the virus at some point on the treatment it is not like interferon where early response gives a suggestion of how well the drug is working and determine the length of treatment thereafter.

 I highly recommend you press your doctor to research this further, unless I am missing forms and there's been some new protocol since the drug came out.

 that being said you have a really great chance to beat this so I'm rooting for you!!

[beto]

Nicole thanks,

This was my understanding.  I am treatment naive...but, I do recall treatment naive or no, it was 24 weeks with cirhossis.  This may have changed.  I'm gonna check.

[Mugwump]

grrr!!

Beto this make me see red as it should many others who are undergoing TX! It is obvious that the insurance company reforms have been screwed over by the insurance companies if physicians are still being bought and sold by the insurance companies in the states.

Sounds more to me that your Doctor is being informed more by an insurance corporation than science or real clinical information.

Yes 12 weeks of TX can happen if you are treatment naive, BUT NOT 8 weeks if you have advanced liver disease that is almost criminal. The guidelines are quite clear 8 weeks should only be considered for those who are both tx naive and have no liver damage.

Judging by the fact that the majority of failures reported here on this forum have either been 12 week tx of those with cirrhosis or 8 week tx of those who have some degree of liver damage. I think the 8 week tx option needs to go because it will only cost more in re-treatment costs and heartaches for HCV victims in the long run.

 

[gnatcatcher]

Gilead's prescribing information says 12 weeks for treatment-naive with or without cirrhosis. 24 weeks is for treatment-experienced with cirrhosis. 8 weeks "can be considered in treatment-naive patients without cirrhosis who have pre-treatment HCV RNA less than 6 million IU/mL." I wish anyone with cirrhosis automatically got 24 weeks, but it may be difficult to obtain that much given Gilead's PI. Good luck!

[beto]

I don't want to throw my dr under the bus here, he does want the 12 week course.  8 weeks was just a confusion because he had thought a message I had left in the office was requesting less time and his understanding was 12 not 24.  I have since been on the Gilead site and it does say treatment naive w/f4 is generally a 12 week protocol.  This must have recently changed because I would not space information that important.  Regardless, that was Gilead not insurance.  The whole point of my comment had to do with the anticipated loss of the harvoni security blanket. As for the politics...well...lot's of material there, right...all good...but, I will push for the longer one.

[Mugwump]

Beto the 24 week tx recommendation option for those who are treatment naive is only for those whose cirrhosis is not well compensated.

So much of the clinical decision to treat with 24 weeks depends upon how well the individual is doing as far as liver functions are at the time of treatment. As we know the differentiation between whether a person has compensated cirrhosis and uncompensated is a clinical one that is not entirely cut and dried.

So I am sure your doctor has your best interests in mind, I thought he had recommended stopping at 8 weeks! Which makes no sense whatsoever if you have any signs of advanced liver disease.

Either way if you do stop at 12 weeks all the best and a very high majority who are UND at 4 weeks do clear with only 12 weeks of pills so it is no where near as much of a crap shoot stopping at 12 weeks as stopping at 8 would be.

Believe me I know how lucky I was getting the full 24 week TX approved quickly before the ridiculous costs started to really hurt the medical insurance industry!

[moma]

Nicole and Phil needed to hear I'm not the only one here feeling this depression and melancholy. Nicole I know just what you mean about taking a look at your past and realizing how different things might have been, had you not had HepC. I'm feeling extremely low and pissed off for whatever reason.
Phil thanks for the 6-12 month hall pass to feel better. Glad to know this is not all "just in my head"!
MoMa

[Phil]

Hope you are feeling better MoMa. I am now at 18 weeks post treatment. Feeling better slowly. Very slowly. I sincerely believe recovery  from hepatitis c to be  a prolonged process. Just understand that no one in the medical community knows what to expect. Nor do we. Human beings have never before experienced mass recovery from a chronic viral infection. New territory.
 
In any case, being hepatitis c free has to be an improvement. In addition we have zero evidence to suggest Harvoni might cause inherent damage to the human body resulting in medical problems post treatment. I'm not saying it's impossible we one day discover problems from Harvoni itself, however that becomes less and less likely as time goes on. Significant, obvious, common problems would have likely surfaced by now.

All medications contain risk. What we know as of 2015 is that the risk versus benifits ratio with Harvoni is way on the side of benifit. Most of the discussions I have read concerning post Harvoni complaints seem related to what we will likely in the future understand as the normal process of recovery from a chronic viral infection. We must also remember that we need to be actively involved in that process of recovery. I'm 61, achieved SVR12 six weeks ago, have perhaps F3/F4 compensated liver damage, although that is not clear, and likely contracted the hep c virus in 1988.  I have no other medical problems but there is no doubt that my overall physical conditioning has deteriated while sick with hepatitis c. That and any underlying liver damage means that getting back to feeling well will be a challenge. Has more to do with where we are physically when we become virus free and begin recovery. My point is how quickly and how well we recover is to a large degree dependent on our actions. For some this will be harder than others. However we can all recover.

Phil

[moma]

Phil,
Your just so positive-thank you. I'm 65, somewhere between f3/f4 also, infected in 1971 through a blood transfusion. Taking time to be patient with myself and not expect so much so fast. Healing from this isn't going to come over-night. Thanks for being logical. My brain needed to be put back on track!
Moma

[chino1969]

This has been a good discussion concerning our post treatment feelings.  It is comforting to know that I am not alone in these thoughts & emptions.  Since 1973, I have had to deal with the physical/emotional aspects of Hep C.  My behavior, thoughts and actions were influenced by the knowledge that I had this lingering time bomb inside of me.  It is going on 5 weeks EOT and I am on a roller coaster ride of emotions.  I'm glad that I am SVR and expect to be as I can no longer feel the virus but now I have to look at life from a whole new perspective; one of healing.  Yes moma, I am struggling with the same emotions you are.  I have to keep myself from looking at how things may have been without this disease.  I would imagine, these feelings are not uncommon.  Stay positive and start thinking about your new life without Hep C.

[Gunner]

Been some good post here. Here is my story.

I finished H/R tx on 8.22.15 weeks 4,8,12 all not detected.  I have had Hep c since 1980 n been on tx in 2000 partial responder and 2014 stopped tx due to bad reaction to interferon stopped week6 based on Dr. Advice.. 2015 began H/r tx in May.  While on tx about halfway through I developed a cough.  Pcp ordered ometprezal 40mg for acid reflex.  It has helped a little but not much.  On 9.4 I went in for RT shoulder surgery Rotator cuff, muscle tears biceps tendinitis..

November 22 go in for SVR level hopefully it will be not detected. When I start VL was 780,000 p/ml all liver fx's normal and Fribosis test was F2-F4.

So, post tx feelings, I still get moody but not as often and I did not realize how much the HepC had affected my mood, the way I react, and how I talk.  It's like my body is not at war with itself.  I never thought I was depressed but after tx I know now that I was probably angry depressed. Even people atvwork said my color looks better n I seem like a different person.

[chino1969]

Gunner, that angry depressed feeling fueled me for many years.  The anger is now gone and it feels like I lost a shield.  I'm grappling with these new feelings.  After so many years of being infected, these are new feelings.  I imagine I will adapt in time.

[beto]

Gunner, Chino, all,

Hep-C is like a bubble of denial.  Kinda like PTSD dissociation.  We know we have it, we talk about it, we have bizarre symptoms that may or may not be from it, when we get sick we wonder is this how the end begins, we feel like lepers, depression becomes the norm, we under achieve...and we are really not as alive as we could/should be.  The remission phase that you guys are experiencing, is maybe just coming out of that bubble of protection, hence brutal regret.  Funny I am in my final month of treatment and I don't want to stop taking the harvoni.  I feel I have been in a limbo for 2 thirds of my lifetime.  I have given up on dreams and careers that I might have continued to pursue.  Yet I count myself among the lucky and blessed ones.  I lived to see Harvoni.  I successfully sired and raised two wonderful kids and have sustained a 30 year marriage.   Sadly though, much is a blur, as I slowly ventured through the cobwebs with a passive-aggressive and persistent bedfellow (HCV), replete with a long list of very strange symptoms that were kept to myself.

Thank you all for heartfelt and candid accounts of your journeys to hopeful sustaining cures.  Welcome back.

[badbradley]

Gunner, Chino, all,

Hep-C is like a bubble of denial.  Kinda like PTSD dissociation.  We know we have it, we talk about it, we have bizarre symptoms that may or may not be from it, when we get sick we wonder is this how the end begins, we feel like lepers, depression becomes the norm, we under achieve...and we are really not as alive as we could/should be.  The remission phase that you guys are experiencing, is maybe just coming out of that bubble of protection, hence brutal regret.  Funny I am in my final month of treatment and I don't want to stop taking the harvoni.  I feel I have been in a limbo for 2 thirds of my lifetime.  I have given up on dreams and careers that I might have continued to pursue.  Yet I count myself among the lucky and blessed ones.  I lived to see Harvoni.  I successfully sired and raised two wonderful kids and have sustained a 30 year marriage.   Sadly though, much is a blur, as I slowly ventured through the cobwebs with a passive-aggressive and persistent bedfellow (HCV), replete with a long list of very strange symptoms that were kept to myself.

Thank you all for heartfelt and candid accounts of your journeys to hopeful sustaining cures.  Welcome back.

This is one of the most powerful and honest posts that I have ever read.
                                                                                                           Brad

[moma]

Beto you took all of our posts and so eloquently married them together. Maybe we should write a book about life being lived sleep walking and finely waking up. PTSD is the closest thing to what we have all experienced living with HCV and our emotions now without it. I'm printing out your last post beto, it says it all. Thank you.
Moma

[beto]

Honestly Moma, Brad everyone,

There is so much wonderful source material in the sum total of our posts, we are in fact writing a book.  Someone will put all of these forums for hep C into some kind of literary work.  We are the front runner pioneers of survival from this dwindling scourge.  I have been riveted to all of the posts and accounts.  I could read everyone's story and there are millions.  For the one's that did not survive to tell a story I would hope to see some kind of memorial.  The rest of us must press on and find ways to make these long muffled voices heard.  Strange...this is our time.  i hope each and every one of us find ways to effect positives change in this world.  Let's pat ourselves on the back...we deserve it.

[slats1056]

 Beto & all Ya'll other guys out there fighting the good fight, How true, How true. However , I believe it is much than a book. It will be an encyclopedic set with many volumes to be referred to by many in the present as well as the future for a long time to come. It's preface and acknowledgement are the memorial to the many who did not survive as well as to the many who have suffer greatly to allow us to get to where we are today. I can only aspire to be as knowledgeable and diligent as many of You out there have shown to be. I am merely the Jester to all of You Nobles out there. Be it only to bring a smile and a shoulder at times help Me to achieve greatness if only in My Heart. The courage and tenacity in everyones fight gives Me the fortitude to keep fighting the good fight.
 EDUCATION IS WHAT REMAINS AFTER ONE HAS FORGOTTEN WHAT ONE HAS LEARNED IN SCHOOL. Albert Einstein

 Life is but to be lived and lived well. The graveyard but a place to remember and not to dwell. So live life to its' fullest.

[beto]

well said Tommy...as always, you have brought a smile to my face...wise words from the "jester" once again...

[chino1969]

beto,
Your post describing post Harvoni treatment is one of the best I have read.  Yes, going through that is like coming out of a bubble.  Unless you have experienced this feeling there is no way to accurately describe it to those who have not.  Combine these feelings with the alienation of having gone it alone adds to the melancholy.  I know I will pull through this it is just that I am facing a whole new beginning.  I, like you, would have done things differently, lived life differently if I did not have the disease.  I'm 63 years old and feel as if I have been cheated.  I am grateful for having been approved for a full 24 week course of therapy as well as being in the care of one of the top hep C doctors in the U.S..  Thank you for your post and airing your feelings.  It helps to know others are experiencing or have experienced the same feelings.  I feel as though I should be rejoicing and running around but I remain cautiously optimistic.

[chino1969]

beto,
I also did not want to stop taking Harvoni.  I was SVR all through treatment and post treatment.  This week I will get my 5 week post bloodwork to see if the virus is non detectable.  The week of November 1st will be my 12 week SVR.  12 weeks seems to be the deciding factor while 24 week SVR is the gold standard.

To all who are beginning this journey, understand you are not alone.  Take care of your body on treatment, drink plenty of water and try to stay active.

I worked the entire 24 weeks with minimal side effects.  The work gave my mind something to keep occupied with.

Good luck to all who are beginning or are currently on treatment.  I feel a duty to share my experience in the hope it may provide someone with inspiration or answer questions.  You are not alone.

[slats1056]

 Chino, Good Luck on Your Labs, Good info. for all out there also. Seems like You have Your head in the right place as well as Your heart. Good Luck again , and SVR to You!

[chino1969]

Chino, Good Luck on Your Labs, Good info. for all out there also. Seems like You have Your head in the right place as well as Your heart. Good Luck again , and SVR to You!

Slats,
Thanks and the same to you.

[Bree]

I have two weeks left on Harvoni and I too, do not want to give it up. I even kiss the bottle every night when I take the pill out. I know now what it feels like to not have the virus and I want it to stay that way.  After I relapsed upon completion of interferon/riba I decided to "live my best life".  That was the only constructive choice I could make. 

I have done the best I can, even still... one day a physician friend who knew me and what I had accomplished before I was diagnosed said "I wish you would quit circling around who you are and be it." Sadly, I knew she was right.   Like a shadow of myself, not being able to full out go for it somehow.

Before treatment, I told my doctor how I couldn't wait to feel great - he said those who have had it don't feel that different... I thought how could that be. He must be wrong.  Now I think it is because they were in the holding phase of waiting to achieve SVR and recovering from whatever treatment they were on. 

It reminds me of learning how to walk again... maybe only this time with bionic legs when we are so accustomed to irregular ones.

Having said that... there's no reason for any of us to "write that script for ourselves".  I think it's important to acknowledge and accept feelings and then to set an intention and give attention to that intention.  Intention.  Attention.  What we focus on expands.  Sometimes easier said than done, however, worth the effort. 

And for sure, we need to be able to talk to each other about what's going on.  I love us!  We have been through the mill and still persevere no matter what!  Our resilience and "life knowledge" is amazing!!! Be well...

[chino1969]

Part of dealing with post treatment feelings is to begin looking at life anew.  For a large part of my life, I've had to deal with this cloud that is now gone.  I came to feel comfort in that cloud because it was familiar.  These feelings I am experiencing are new, a bit scary but I believe this to be normal.  My only reason for posting is to provide an experience for others to realize they may not be alone.  Time to face the future. 

[Bree]

Thank you for starting this thread Chino.  It's heartfelt, amazing and a most helpful thread to me and others as you can see from the posts.  I understand the cloud.  I've lived in it too and pretended I wasn't. Stepping into a new life without carrying this burden is new and is a bit daunting.  Letting go of something positive or negative that has been in our thoughts and bodies for decades takes a readjustment for sure. 

I took a big dip during treatment (almost done, than two weeks to go)... fearing it might not work, i.e. not living in the present.  I had to work hard to get my belief system back on track.  And, I have to do everything I can to keep my belief system strong and believe that it is and will work long term.  I feel like everything we are going through is normal.  I was coached by a friend who has recovered from cancer that I had to get back into believing I could and am cured.   My chiropractor says: I can. I will. I am.

[chino1969]

Bree, very well said & thank you.  Having had Hep C for 40+ years, and now being rid of it, is indeed daunting and a bit scary.  The barriers I put in place to help me mentally cope with this disease are no longer needed.  The alienation I have felt can slowly give way to healing.  I'm sure everyone has a similar story to tell of missed opportunities, regrets for actions or words, etc.  Once you begin to realize the reason for your acts, thoughts & feelings is now gone you must begin to rebuild the person who was put on hold, hidden behind these self imposed barriers.  For awhile I felt very vulnerable and unsure of myself but I've worked through that and am slowly realizing I have been given a second chance.  I thank God as well as all of the research and effort that has gone into helping to eradicate this insidious disease.  This post is for those going through this journey.  There is another life waiting for you.  If you relapse, realize the new treatments will be even more effective and this disease will be conquered.  Be a warrior and tackle this challenge with every fiber of your being.  I wish the best to anyone beginning, going through or finishing treatment as well as those who are waiting for the new drugs.  Understand that once the cure rate began reaching the high success numbers, the new combos. have become more effective and have grown exponentially.  Have faith & remain strong.  If cured, recognize you now have a second chance to help make the world a little better.     

[mollythedog]

Hello Beto, I've been reading your posts and replies and would just like to add my experience. I did S/O plus low riba dosage in March for 12 weeks. I am gt1a transplanted in October 2013 for hcc F3/4. In Spring the protocol was 12 weeks for me. I went from VL 8 million ast/alt 290/350 to VlL 28 u/l asp/alt below 35 in 6 days, the VL undetected at 8 and 12 weeks. Next tested 12 weeks EOT. VL3 millio ast/asp 250/280. Relapse. I am SURE that if I had done 24 weeks I would have beaten this killer. They then changed protocol here in Italy for patients like me to 24 weeks but I had already finished tx and cannot do Olysio again due to resistance factors. Please insist on 24 weeks. I wouldn't like anyone to go through what I did, the psychological aspect requires so much effort, pain, prayer, sorrow and fear. Ok, it may make you a better person but what a
 price to pay. I am now waiting to start on 24 weeks Daklinza/Sovaldi and riba but this time with a lot less conviction. The hardest thing is not to let it hang over your head in everything you do. I was lucky, I only discovered I had it in 2012 and had stayed compensated all the time till hcc appeared in 2013. I'd been fit, healthy and unaware of the beast in me. So Beta, please insist and don't settle for 12 weeks if you're F3 or F4. If you're not, then you'll cure with 12 weeks like 24. Anyway, my thoughts and best wishes to all of us here, expressing the positive and negative thoughts that torment us in this common battle. But we must go out there and LIVE. ❤

[beto]

Molly,

Thank you, this has been on my mind a lot on account of the looming end of treatment (2 weeks).  As we are all lab rats in this whole thing, and the politics of cost that exists between providers and insurers, places we the afflicted in very desperate and compromising positions. In spite of being cirrhotic, I was denied 3 times and had to put up a fuss on the 4th denial.  Funny, the 'closer' may have been a strong letter that I wrote.  I had an uppity pharmacy and a feisty docs office pleading my case as well... and they (insurance) still fought me tooth and nail.

I am in agreement with you on the therapy duration for cirrhosis cases.  We must make sure.  Our candles are burning quicker and the full force of a viral army, pissed off from the last course of meds, might prove too much, as we scurry to find the next combo treatment.  There have been posts by others that were failed by the modern treatments (s/o, etc.) that successfully cleared EOT (with other drugs) and were in a similar situation as you.

We are indeed the strong and have been tested by uncountable challenges.  You Molly represent a group of the particular courageous.  No you do not need to be tested anymore.  Your time is here and your next course will be the one to put you passed the finish line. Praying and pulling for you. 

Peace

beto

[beto]

Molly,

Thank you, this has been on my mind a lot on account of the looming end of treatment (2 weeks).  As we are all lab rats in this whole thing, and the politics of cost that exists between providers and insurers, places we the afflicted in very desperate and compromising positions. In spite of being cirrhotic, I was denied 3 times and had to put up a fuss on the 4th denial.  Funny, the 'closer' may have been a strong letter that I wrote.  I had an uppity pharmacy and a feisty docs office pleading my case as well... and they (insurance) still fought me tooth and nail.

I am in agreement with you on the therapy duration for cirrhosis cases.  We must make sure.  Our candles are burning quicker and the full force of a viral army, pissed off from the last course of meds, might prove too much, as we scurry to find the next combo treatment.  There have been posts by others that were failed by the modern treatments (s/o, etc.) that successfully cleared EOT (with other drugs) and were in a similar situation as you.

We are indeed the strong and have been tested by uncountable challenges.  You Molly represent a group of the particular courageous.  No you do not need to be tested anymore.  Your time is here and your next course will be the one to put you passed the finish line. Praying and pulling for you. 

Peace

beto

[byebyeC]

Nicole and Phil needed to hear I'm not the only one here feeling this depression and melancholy. Nicole I know just what you mean about taking a look at your past and realizing how different things might have been, had you not had HepC. I'm feeling extremely low and pissed off for whatever reason.
Phil thanks for the 6-12 month hall pass to feel better. Glad to know this is not all "just in my head"!
MoMa

Hi Mona,

Please talk to your Dr. about the depression. It's rare, but some people on treatment are having serious issues with this. There is help here and at your Dr.'s office, and it can get better.

I hope having others on this forum, who know exactly how you're feeling makes you feel validated and not alone.<3 bye

[moma]

byebyeC, I've been on this site going into whatever forum was dealing with where I was at the time, since 2 days before I even started treatment!!!! At different times during this journey it has really helped communicating with all you warriors. My grandson's would call all of us Super Hero's
Funny about depression. My gastro doc is the one that put me on antidepressants probably more than twenty ago. He totally believed the liver messed with your neurotransmitters and the liver being in a compromised state I would need to stay on them indefinitely. So I'm working on easing myself off. The feelings now are different. I feel like I couldn't see out my car windows for 40 years and all of a sudden I went through the car wash and the world is so clear. I liked, what Beto I think called it, an "angry depression". It's an angry, sad, scared, lost feeling.
Having HepC effect you all your adult life and never having experienced the freedom of health is now paralyzing until we figure it out. 
And we will all figure it out through each others help. Having a place to write out our feelings and concerns, knowing there are true soul brothers and
sisters out there cheering us to the finish line.
I think I'm going up to the attic and look for my old pom pom!!!!!!!HaHa
MoMa

[byebyeC]

Hi Moma,
I'm glad you're getting the necessary support we all need here. This forum is a true Godsend! Love that about your grandson!

I too have had this since I was 18 yrs old... 50 now. Never known an adult moment without the anvil over my head. It'll be interesting to see if we know how to act when it's gone huh?!

Perhaps it's best to re-aim our focus from this odd middle ground/undiscovered country to being glad we're not one of the 2 people who are dying every hour from this disease and are past help. Maybe there's no simple solution like that I suppose... good reminder that it could be worse though

As long as your feelings don't stray into a danger zone, just hang in there with us. We can DO this together 

<3 bye

[mollythedog]

beto, i see your VL was low. This is good, less work for Harvoni. I am sure you are cured. Thanks for replying, will watch out for you posts. Since yesterday I have been feeling good. Stopped stressing and just getting on with life. Got a visit on 30 September. Will keep you updated. Hello to Brad, Larry, Kim, and Moma, everthing's gonna be alright....Bob Marley. Really, it is. Thanks for this space, whoever started it up.

[Philadelphia]

I've really enjoyed reading this thread. It has provoked me to writing today's blog post http://blogs.hepmag.com/gracecampbell/2015/09/hepatitis_c_who_are.html around the ideas discussed. I've put a link to this discussion and a thank you on the post.

[BattleTheBeast]

Hi all,

Post Harvoni feelings? That's a really tough one for me. I am so very grateful to be among the cured after finding out that I had Hep C and was F4 after probably 40 years of living in a fog completely clueless that i had a monster raging inside of me. How many times over the years was I miserable, depressed, exhausted and because i wasn't in the "right" group no doctor figured it out. Would it have changed anything? I will never know. Today i am virus free after 9 weeks of S/O misery that thankfully my IDhero convinced the insurance Company to switch to another 20 weeks of Having. Today i am virus free and fighting to have a clear headed life without the dragon hurting me everyday. Today i wake up every morning and spend 15 minutes getting my hands to open and close without pain, today I cant even walk 2 blocks without having intense pain attack me somewhere random, today I am virus free. I have to believe because I was lucky enough to get almost 30 straight weeks of combined medication I will beat this crazy happening inside my body because the beast is gone. Today i think about the special people here who helped me through my journey that have to take that journey again because the beast is persistent, because the insurance Companies don't understand as much as these brave, intelligent people do about how to battle the beast. Today I hear about the ignorance of some doctors offering the wrong 2nd treatment to those who failed with S/O. Today i am so thankful that my body rejected the Olysio and my doctor was an amazing advocate who helped me thru the crazy reactions I had and then personally got on the phone with Express Scripts for almost an hour to get me Harvoni approved for 24 weeks. Today I pray that all my supporters on here get an advocate that will help them get the right treatment to slay the dragon. Today, even when my body is flipping from my crazy treatment I know just how lucky I am. Today I wish i could give any of you still fighting this beast the strength and persistence to keep fighting until you have won. Today I want to say thank you to all the special people from this forum who have a place in my heart. Post Harvoni I am virus free and battling to get me back and I will win and so will all of you!

Mel

[beto]

Wow mel,

Thanks for the heartfelt expression of your journey.  May you find peace moving forward.  I look back over the past 40 years and know that there was always something not right, that set me apart.  How I moved on from so many dreams that had once meant so much...then just disassociating so easily and cutting out my passions like dead limbs.  Was that the hep...like you I will never know.  I stand here blessed as one of the lucky ones.  Slowly awaking from a strange dream.  Did I lose something?  Were they lost years, or did they somehow shape me into a better person than I would have been?  The virus was a part of me, that I can never deny.  Time to wake up in the mornings without that omnipresent bedfellow jumping on my back as I attempt another day.  Peace out...