I'm not even sure treatment is worth the bother

[amell]

I've been living with HEP C type 1 for a long time now, well over 20 yrs. The only reason I know I have it was because I had to get blood work done for a rehab program many years ago when I was a heroin addict. It's been confirmed many times now through the VA and I've remained stabile since the first test as far as I know.  I have to admit that I'd rather get a poke in the eye with a sharp stick than go to the doctor, but I do occasionally go.
I waited and waited for years to get in treatment and finally my number came up at the VA and then it got delayed until I had quit drinking for a minimum of 6 months which I did and I'm still sober. That beautiful bottle of scotch just mocks me every time I walk past it.. I'm not looking for an excuse to start drinking again. It feels good to be sober after all..
Anyway, I'm not sure that treatment is going to significantly change my life in any way and in fact there's a possibility it'll make it worse.
I have plenty of things that I might die from and they all can't be treated or cured. I still ride in cars with random morons around me in every direction and I'm not about to start walking everywhere. There's an endless list of things to kill us every day of the year so I certainly don't dwell on them all and I wonder why I let myself dwell on HEP C since it really doesn't cause me any problems.
The bottom line is I'm not sure it's worth going through treatment or if tax payers should foot the bill for a treatment that at this point in my life feels a bit unnecessary.  The tough part is that I really have nobody else to talk about this with being I'm the only one in my family and friends with Hep C and I'm not really all that sold on the idea of getting treatment that might make me feel pretty lousy. I feel pretty good as is.

[dragonslayer]

Really bad idea, Amell.   HCV is a progressive disease.  Believe me, just because you feel no palpable symptoms now doesnt mean you wont in a few years. .I dont know how old you are but its really academic.... So long as there are good, effective, and relatively side-effect free cures available, youre making a gigantic mistake passing them up.   Seriously...   Dying from liver disease is probably one of the most unpleasant ways to go.  Why play Russian roulette with your health, especially since the odds, over time, are that you will become increasingly symptomatic in a life-impactful way?   And, BTW, what bother?   Most insurance is covering it today, the drug(s) are easy to take, and most patients have no or minimal side effects.  Weigh that against a future of increasingly negative symptoms, cirrhosis, possible cancer, and death?

It's your life and your decision, but you really need to rethink this.

[FutureThinker]

Hi Amell and I'm glad you posted your concerns on this community forum.  Lots of great info and support here.

I was diagnosed in '11 and chose to wait for more effective, safer and tolerable drugs due to having minimal liver damage -- the docs said I could wait AS LONG as all tests continued to be in reasonable ranges. Then, low and behold, the DAAs hit the market and we are now in an exciting time to get cured of this! The new drugs are VERY TOLERABLE, totally unlike what so many people had to endure years ago. The percentages of cure are now in the mid to high 90s; they used to be in the 30% range..... big difference!!

Before you write off treatment, you owe it to yourself to get the facts on where your body is with this disease: liver function tests, genotype, viral load, fibrosis (liver scarring/damage) status.  At least go and get this info so you have the necessary information to make a sound decision on whether to get treated or not.

Since starting Harvoni, I feel better than I've felt in a very long time.  I had extreme fatigue for years, and it's like a weighted cloak has been lifted off me. You may not be able to understand how much better you can feel, until you do. (That was the case with me) The drugs now are so tolerable that very, very few stop treatment due to side effects.

Go and at least get the info you need to make this life-changing decision. And keep us posted! The future is bright --- Future Thinker

[lporterrn]

Hi Amell,
I am so glad you posted. Sometimes we just need to get these thoughts out in order to look at them. Here are my thoughts:

Hep C usually doesn't begin to start causing problems for 20 to 30 years. It remains silent, but when it speaks up, it speaks up loudly. If you wait to do treatment until you have severe damage, then you may be stuck with cirrhosis, and later develop liver cancer. If you treat it early, the liver can heal. Also, risk for all causes of mortality increases with hep C, and life expectancy drops by 15 an average of years as a result.

The VA just approved treatment for everyone, regardless of stage. They got a fantastic price for the drugs, and it will cost taxpayers less to treat you now than to wait to see what happens later.

I hope that sobriety brings you the joy that it has brought me. It takes awhile, but nothing has given me more, whereas drinking stole from me.

And you are worth it. Am I correct in assuming that you use the VA because of service to the U.S.? If so, it would be wonderful if you allowed taxpayers to give back a little by way of medical care. Dollar-for-dollar, a healthy you is a good investment.

[amell]

What gives me pause is that a friend of my gf just went through treatment and has been declared cured, but now she's developed cancer. She's not sure it's related to the treatment or not, but she's got it. I meet her once, but we don't talk on the phone at all. She lives in Florida and I'm in SC..
It just feels like damned if you do, damned if you don't. I suppose I really need to sit down with the hepatology department at the VA and tell them my concerns in addition to seeing what transpires with my gf's friend..
I'm 56, soon to be 57 so I have no plans to live much longer than my dad who is currently 87, but he doesn't have Hep C.. I'm not really all that hung up about living another 40-50 years. I'd be happy to hit 75 then let them put me in an envelope to ship my carcass off to the Naval yards for burial at sea., maybe the Oscar Meyer factory for all I care..  My mother, however did die from brain cancer so that's a bit worrisome..

[lporterrn]

Life happens, and just because we buy car insurance doesn't mean we can't get into an accident. Treatment does not cause cancer - it prevents it. The exception is that if you have cirrhosis, and are cured of hep C, you are still at risk for liver cancer (but not from lymphoma).

As for not being hung up on how long you live, I get that. Unfortunately, our health choices aren't just a matter of how long we live, they are a matter of how good our time is. For instance, we don't just die from obesity, we live an average of 15 years of crappy quality of life before we die.

And so it is with hep C - it is a virus that slowly, very slowly destroys the liver and in some ways, the slow nature of this is the worst part of this nightmare. For me, it is a no-brainer - take a pill with hardly any side effects for 12 weeks and get cured vs risk cirrhosis, liver cancer, and so on? It was an easy choice.

[Luna7]

Amell you sound kind of depressed. I guess I really recognize it because that's how I'm feeling - why bother because we're just going to die anyway.

Grrrr I can't really describe how I'm feeling because of this severe brain fog, except your post really touched me because I see in you what is in me - not feeling like I'm worth enough to take care of myself.
I don't mean to put words in your mouth, but that's what came across to me.
I've even thought the very same thing - why spend so much of society's money when maybe someone else can use it.

Anyway, I have an appointment with the doctor tomorrow. I've been putting it off. I don't like to be poked and prodded and I don't want to experience going through some insurance fiasco. Just knowing what others go through here is both comforting and disturbing - I don't want to deal with the drug companies disrespect of us by refusing treatment - that almost feels like abuse to me. It feels like the fight of my life and I'm too tired to deal with a fight.

I actually love so many things - nature, my cats, creating things, my family - but that all seems so far away like I'm looking through a fog - and it doesn't seem to matter anymore. This brain fog has really increased lately.

I will go tomorrow though and start this fight, and I hope you do too.

[KimInTheForest]

It's worth the fight, you guys. Go for it. It will happen. And then you'll be cured forever.

kim

[Luna7]

Thanks Kim

[lporterrn]

Luna's words reminded me of how hard it is to take action when we aren't feeling well. Hep C causes depression, and then sometimes depression has independent causes. Regardless, it takes great strength to move forward and to take steps towards health. The struggle is easier if we aren't alone. Good luck with your appointment Luna.

[Philadelphia]

What Kim said. I think we spent a long time thinking being cured was not likely and accepting the consequence of HCV taking our lives. To change our mindsets towards a cure requires us to really reframe a lot of our thoughts.

But it IS worth it. You are worth it.

[Flaco]

But it IS worth it. You are worth it.

Yeah, you are, man, and as a vet you 100% deserve whatever help and comfort the US taxpayers can provide you.
I'm at high risk for cancer, but that's not stopping me from treatment for hep-c. Hell, I could die in a car wreck coming home from my doctor's after getting my final "cured" walking papers. Who knows?
Hoping you take up the challenge.

[FutureThinker]

Philly, you are so right! FT

[amell]

The thing is that I'm not really all that depressed. Like anyone I have my ups and downs. That's never going to change and I sure don't think hep c treatment is going to change everyday ups and downs.
Right now I'm taking care of two elderly people, my dad and his wife so it isn't as if I just have plenty of free time. Additional, as mentioned my girlfriend has a friend who has developed lymphoma immediately after hep c treatment. I gotta say that gives me a bit of pause I'm sure not looking for reasons to get sick(er).
I'm not sure that it is related and there may be evidence that the hep c itself brought it on before the treatment, but I'm willing to wait awhile to see what happens with her and what she finds out.
If I thought that treatment would make me feel a lot better I wouldn't hesitate, but on the other hand the prospect of feeling a lot worse doesn't thrill me either.

[Flaco]

What gives me pause is that a friend of my gf just went through treatment and has been declared cured, but now she's developed cancer.

Yeah, cancer happens. In many cases to otherwise healthy people. Sometimes people who never smoked or were around it get lung cancer. Some smokers never do. Cancer is so capricious that I wouldn't hang my hat on it for anything. You get it; that's all. Or you don't. Who knows why?

It just feels like damned if you do, damned if you don't.

Sure as hell does! That's life its ownself. You just never know. All you can do is wring the most out of it while you have it.

I suppose I really need to sit down with the hepatology department at the VA and tell them my concerns in addition to seeing what transpires with my gf's friend..

Good thinking!

I'm not really all that hung up about living another 40-50 years. I'd be happy to hit 75...

I'm working on a plan for my 75th birthday, should I ever have one and I have some working liver tissue by that time. It involves having a fine cigar and a good beer or three. May not be the best plan in the world... I'm still working on it. I have 10 years to plan (maybe).
Take care of yourself, amigo.

[lporterrn]

Hep C is a risk factor for lymphoma. The irony is that the risk of lymphoma is higher with lower stages of fibrosis, the theory being a possible connection because the immune system is on overdrive dealing with hep C. This is why people go for 2 to 3 decades with minimal problems, and then when they hit their 60s or 70s, the hep C progresses much faster.

And as I said before, we have an increase risk from all-causes of mortality, and while I said earlier that on average, people with hep C die 15 years earlier, I recently read that it is 20 years.

[FutureThinker]

Hi Amell, I still would like to suggest you get the necessary info in order to make this decision.  Get your blood labs done and talk to the doctor.  Then you will have the facts in front of you and you can decide whether to go forward or not.  You really can't make a sound decision until you get the basic facts as to where you are on the HCV path. FT

[BubbaT]

Yeah I did it, I'm a navy vet, it was a little tuff at first, but I'm glad I got treated, I'm working, feeling better and 59 in September, so at least go see where ur at dude...

Actually your mind will be at ease knowing you started getting well.

[Mugwump]

I lost jobs because of the fact that this disease slowly debilitates you. You slowly become sick and you do not notice how sick you really are.



It is a creeper disease as you slowly become chronic, it is not just. one day all of a sudden you are sick. So you do not notice the slow downward spiral to cirrhosis the same way that a chronic alcoholic does not see alcohol abuse as sickness which kills off far too many liver cells.


When you do progress to cirrhosis you can lose your job, you become cranky. You develop hepatic encephalopathy you have more hangover headaches that are a direct result of the toxicity of dead liver cells slowly damaging your entire respiratory system, your mental faculties, your renal system which then usually leads to kidney failure. Your oesteo and joint health degrades because your metabolism goes haywire.


In essence you start to completely fall apart prematurely and it is directly due to having progressive hcv eating away at your liver like a parasitic worm infection that does not die.


Then one day you catch a severe cold or flu or other disease which suddenly becomes life threatening because your immune system can't keep up and all of a sudden HCV attacks without mercy and you progress rapidly to ESLD and most likely die prematurely.


I have personally known 6 people who have died this way with HCV over the years. Only one had a successful transplant and he lived 18 years after the transplant and then HCV killed his new liver and he died 5 years ago just before DAAs started to become available.


A good friend took his own life in 1992 after being diagnosed with this disease and he left his beautiful 5 year old son and loving wife to grieve.


These are all the best reasons why treatment is so important before you progress to cirrhosis. It was and is criminal to reserve treatment only for those who have a damaged liver and the insurance companies, politicians and bean counters should be held to task. This disease is a plague that was largely brought on by war and the necessity of unscreened blind blood transfusion on the battlefield and other out dated and dangerous medical practices. It is the responsibility of all of us to eradicate this disease now that it is becoming possible to cure this curse once and for all time!

[FutureThinker]

Mugwump, very valuable info, as usual.  I am now near 6 weeks into my Harvoni journey, and am noticing more clarity and focus than even 3 weeks ago.  You just don't know how abnormal you feel until you don't anymore.  A bit surreal, but a very nice revelation.  FT

[Luna7]

Good luck with your appointment Luna.

Thanks...everything is progressing nicely...dr. visits...tests...and now I'm waiting for insurance approval.
I feel better already just getting all this into motion.

[Luna7]

It is a creeper disease as you slowly become chronic, it is not just. one day all of a sudden you are sick. So you do not notice the slow downward spiral to cirrhosis the same way that a chronic alcoholic does not see alcohol abuse as sickness which kills off far too many liver cells.

That's so true. I mean I knew I felt bad but it was like suddenly I was hit in the face with it...where before I could work in the garden for hours I could barely finish doing the dishes, even needing to do them in shifts.

[BillT]

Hi Amell,
            I got mine in the Army and had it for 43 years and was treated through the VA.Once was the interferon and this time with Viekira.I just got my 12 week post treatment and it worked.I never had any problems either but if they're willing to treat you I say go for it.I never expected to see 19 but I did and now I'm 60.One thing you may want to consider is the things Hep C and do such as cirrhosis and liver cancer.I personally have better ways to leave this world.You might at least consider is letting them do the blood work and a FibroScan to see where you stand as far as any liver damage.I lost a brother to cancer and he didn't have Hep C,didn't smoke,and didn't drink.As Lucinda said,life happens.The decision is obviously yours whether to treat or not but as I said you may at least want to consider having a talk with them and letting them run the tests before you make that it.Best of luck on whatever you decide.

[KimInTheForest]

Mugwump, very valuable info, as usual.  I am now near 6 weeks into my Harvoni journey, and am noticing more clarity and focus than even 3 weeks ago.  You just don't know how abnormal you feel until you don't anymore.  A bit surreal, but a very nice revelation.  FT

I too noticed a big uptick in mental clarity once I started treatment. That was unexpected and very welcome. I was aware of my improvement in mental clarity and general mental functioning after just one week of Harvoni. Some of that was the "Harvoni High". But my lab results later showed that my viral load had fallen from 4 million to just 130 in the first 7 days of treatment! So no wonder my brain could work again.

kim

[Luna7]

That's interesting about how you felt better in a week, Kim. My daughter is having a baby at the end of the month and I would so much love to have my mind back! I do have a strong feeling that my experience would be similar to yours and i would start feeling mentally better in a week or so (I have severe levels of inflammation causing most of the brain fog, and the brain fog increases when I feel more inflamed due to working too much, etc). Forget the weakness and just feeling sickly...if I could for now just have my mind for this experience I'd be happy.
I'm thinking of not waiting for insurance approval, and going for the generics. Supposedly I could have the medication in hand around 10 days from application.
Even if I am approved in 1 week, it's possible the co-pay would be prohibitive since they're doing that screwy thing with expensive drugs by putting them in tiers with higher copay (though I do have cost sharing that would mitigate that I think).
I'm going to bug people tomorrow to try and pin things down so I know what to do.

What are the ramifications if everyone starts going with the generics? Will govt. trade rules put a stop to our ability to go that route once drug companies are losing so much profit. Or will going with generics force drug companies to lower their prices here? How will anyone's action in this regard enable more people to get treatment?
Perhaps it's not time to make a political statement, but instead to just do what I need to do personally right now.