What if i decide against treatment

[annidote]

What if i decide against treatment for Hep C Type 1a. I am 55 yrs old and have had Hep C for 23 years and am afraid of doing treatment for this. What are the risks?

[alagirl]

Yep.  There are a couple of other acutes on these boards, but I haven't seen them around in a long while.

[oceanblue701]

Everyone has said everything I would say already. I was shocked to have it. I was appalled to have it and did not want to walk around with a communicable disease. I went through treatment last year and now I don't have it anymore.

Everyone is really upset when they learn they have it . .. treatment is scary. But, it is the way out. I got rid of it as soon as I could and that is what everyone is doing here. Whether it takes one try or more, it is really worth the effort to be done with it. The alternatives are illuminated quite clearly in many posts above. You can do it!

[Anne1717]

OMG !! Another acute!!  A needle in a haystack!!  

[alagirl]

I wasn't a chronic patient.  I had acute hcv.  I had a very difficult treatment.  But now I can move on with the rest of my life without the virus.  I would treat again tomorrow.

[streamline569]

We seem to all have somewhat of the same story. Sick for years with stomach upsets. Can't eat certain foods. Tired, fatigue,  just assume we're getting old and tired. Skin problems. Headaches, aches pain. We go to doctors and are get checked often with regular blood work and our Primary care doctors never give us a test for hep C until we are so advanced we have little choices. I hope with the new meds and there being a cure this changes and the newer generation has a better chance then the medical community gave us.

[curiouslady1]

Just wanted to clarify something said re trials.  The Quantum study does not offer SOC (interferon and riba) if the study drugs are working.  The placebo arm is randomized to an experimental arm after six months, not SOC.  The placebo (control) arm is used for comparison purposes and chances are only one of 9 that one will be randomized to it.  What probably happens in Quantum as it happened in my trial is that if you do not clear the virus according to the study protocol (a month?) or the load increases etc. then you are put on SOC (that means ribavirin and ifn).  This is called "rescue" treatment.  In all experiments, you have the right to drop out of the study at any time you wish.  But again,  participating in a trial is scary too.  If it is not "open label" you are left in the dark as to the drug you are taking or not.  If it is early in the drug's development, you don't know for sure how it will affect you, etc.  As Vann stated, it is important to study these trial drugs carefully and any information you can get on them before enrolling.  Regarding the big picture, it is possible to do nothing and die of natural causes or you could contract a lot of ancillary nasty little chronic illnesses like skin problems etc. and still have 0 liver fibrosis (as happened to me).  There is also the social problem related to having a communicable disease.  So if all this doesn't drive you into adding another AD, I don't know what will!

[Aquisi]

"My AD & Anxiety meds do work and haven't changed in 10 years"

Can you share the AD's your taking? Just want a feel of what others are taking. My Doc wants me to start on them a month in advance of treatment, I voluntarily stopped Pegasys/ribo in 03 because of depression, back then I felt like not having mind altering substances in me. That's all changed now, I'll do whatever it takes to go on with tx.

[Vannh9]

I was diagnosed 6 weeks ago and I have gone from being very sad...to pretty mad...to creating an action plan to rid myself of this disease.

I am a 53 year old professional single Mom and have always been very active. I had minor surgery 9 months ago and keep feeling like I hadn't fully recovered. I was SO tired all the time. I would work and come home and fall into bed...even friends asked "are you OK".  I had lab work done and found that the AST/ALT were elevated. (they had been elevated for at least 3 years) I didn't know this was a potential indicator for Hep C and other liver issues. I was ultimatley diagnosed  and they believe I have had the disease for 25-35 years. I am Stage 2 / Grade 2-3. I am not only tired, but I have horrible digestions issues..I won't share all the details:-)

I did a ton of research to get me to where I am today. I will start treatment in 3 weeks with VIC. I applaud anyone that is doing trials! I don't think it has to be a last resort if you do your homework. I have great insurance and would jump to be in the Quantum study that Curiouslady mentioned.

That doesn't mean that I would do ANY study. I have read every shred of info on Psi 7977 and as someone mentionded there are some arms that are better than others, but you will ulitimatly get  SOC in the end.

So...go through all the appropriate phases of acceptance and do your research. As so many have said...you know your body...your circumstances..your living arrangements. etc. You are the only that can make this desicion. I struggled for 3 weeks over Victrelis or Incivek:-)  

Good luck on what you choose to do and know that you have found some incredibly knowledgeable  and compassionate people with varying opinions to help you along the way:-)

Take Care~

Vann

[HectorSF]

You can decide against treating your hepatitis C or any illness for that matter. That is your right. Deciding not to do something is as much of a decision and deciding to do something. It is a decision with consequences no one can predict and could possibly lead to your death from liver disease. But whatever you choose is a risk. And only you can decide what you value and don't value.

To make an informed decision you should find out how advanced your liver disease is. If you want to know what you are risking. You should have a biopsy performed as others have said. Are you afraid of a biopsy also?

A few things to keep in mind as a consequence of not treating...
You should understand that as you get older your liver disease will progress faster then when you where younger. So if you have stage 2 or 3 liver fibrosis you can easily progress to cirrhosis in less time then it took you to develop liver disease up until now. You should also realize that the older you get and the more advanced your liver disease the more difficult it will be to treat successfully. You odds of successfully treating will be less then they are currently.

As long as you are prepared to accept that by not having treatment you could possibly develop liver failure or liver cancer in the future and die a horrible painful death then that is your personal choice. Maybe you have little reason to live and don't want to hassle with treating for 6 or 12 months of treatment. As we older adults know we are all going to die at some point.

What I find strange is "am afraid of doing treatment". Why? But then again apparently not afraid of dying horribly from liver disease. I find it curious. Maybe you don't believe in treating any illness? I know certain people do. For my own edification could you explain why you prefer the possibility of death vs a temporary treatment for 6 or 12 months? I am a person who will do just about anything to try to continue living, I am interested personally in how you fear treatment rather then the possibility of death. If this is not too personal. Is this part of a belief system? God's will? (just so you know... I have advanced cirrhosis and liver cancer and if I don't get treatment (a liver transplant) in the next 2 years my chances of living beyond that are low).

Thank you.
Good luck with your decision.
Hector


What if i decide against treatment for Hep C Type 1a. I am 55 yrs old and have had Hep C for 23 years and am afraid of doing treatment for this. What are the risks?

[FlGuy]

Hmmm,  what are the risks, you ask.  Well, your liver could be compromised causing its life-giving filtering properties to begin to fail which, in turn, can decrease and impair almost every aspect of your health.  It can further cause mental acuity loss to the extent that you hallucinate and loose any firm grip on anything that resembles reality.  The effects of these spiraling impacts to you could have devastating effects on those around you and those who love you in their vain attempt to watch out for your health and welfare which may be ebbing away like the insouciant tide of your life.  Of course, it would lead them to wonder why a loved one would overtly choose that course of life and the unmistakable regrets of and wounds to those left behind.
On the other hand, maybe not.
Good luck in your decision.

[willbb]

if your liver damage (fibrosis) is advanced is possible cirrhosis,leading to liver failure and HCC(liver cancer.)
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meant to add the words  "which may" lead to liver failure and HCC.

this does not always happen

[hrsepwrguy]

Let me start by saying I'm not a trial basher, I believe they are absolutly vital for future, less invasive higher cure rates in the future. I found treatment through clinicaltrials.gov however it is more of a study of approved drugs than a trial. As pointed out by nygirl in a previous thread the majority of people entering trials are people who failed previous treatment attemps and feel that they have no other choice to try and rid themselves of hcv. Someone please correct me if I am wrong, but since 2000 how many promising new drugs have actually been approved safe and effective by FDA. 3-ribavirin,telaprevir and boceprevir and as I said please correct me if I am wrong. The choice to treat is a personal one that should be well thought out and discussed at lenght with a qualified doctor. A trial is exacly what it says it is a trial, no in depth hard data but in the process of compiling that data. I personally like facts and proven cure percentage ratio's which are the best they have ever been for GT 1 patients at this stage in the game, You have gotten some good advice, find out the extent of liver damage and make the decision to treat or not and what drugs to treat with while being advised by a qualified doctor who has expirience treating hcv

[willbb]

Hi beaner...all good here ....you??  

[Anne1717]

+ 1 Will  How the heck are ya???  Hijack in effect

[willbb]

Whether or not and when to treat is always a personal individual desicion. The good advice above to get your liver checked either by biopsy and/or fibroscan along with knowing what geno type you have..is important info.to make that desicion.
The treatments currently are approx. 75% successful (for either 6 months or 1 year(depending on many factors) and  there may be other medications in the future with even better efficacy.
As stated above also ...the risks of not treating .especially if your liver damage (fibrosis) is advanced is possible cirrhosis,leading to liver failure and HCC(liver cancer.)
Good luck and welcome..
Will

[Anne1717]

I have no regrets that I treated despite the side effects. The thought that I was living with a virus, albeit a short time, and could inadvertently pass it along to someone else was too burdensome.  They didn't say it, they didn't have to, but I knew family and friends were afraid of me - I was afraid of me.   Six months later and so far virus free, I feel a tremendous weight lifted.  

Everyone is different and we have different personal reasons for treating, but that was mine.

[printze]

I was diagnosed recently with viral load 560,000 tye 1a- 53yrs old probably had for 25-30 yrs . Will have fibroscan in October to determine condition of liver . I too am scard to death of this but I will treat and am keeping positive I will lear this by week 4 and stop treatment week 24.Try to stay calm, DO NOT DRINK ALCOHOL OR SMOKE .Eat healthy , get plenty of rest, and eliminate stress . You can do this , after all it is a mater of life or death. You will be fine . I am actually anxious to start treatment and put this behind me , you can do the same . I am still in thre primary stages of assesment , and I will know exactly the full picture next month. My hepatologist thinks its fibrosis stage . Whatever the outcome is , it must be done , there is no other alternative. We are all in this together .    

[curiouslady1]

There are always risks no matter what you do or don't do.  But knowing as much as possible about your body will help you calculate your risks and act or not act accordingly.

[curiouslady1]

Once you have your liver checked and have consulted with a good doc, you will know better whether a clinical trial will suit you or not.  There are a number of less harsh drugs in development.  Check the archives for threads concerning some of these drugs.  Here is one coming up shortly NCT01435044 at clinicaltrails.gov  New sites are being added.  Keep in mind that this is not for everyone.  

[JasmineT]

I am 49 and stage 1.  I don't know if I have had hep c 12 or 30 years so no way to judge how rapidly it is progressing.  The pace can of course change over time.  I weighed in that in 15 years, treatment might be much harder on me and a liver transplant or cancer did not sound like fun.  My quality of life had already dropped over the last many years. I knew something was wrong, just didn't know what.  I was already not functioning like I should.  Maybe I can get back to healthy if I do this before it gets too bad or I am not as Abe to recoup.  I knew I needed to do this when I weighed all of the factors.  The doctor thinks 89% percent chance of cure for me at a cost of 6 months of feeling like crud.  No brainer for me.  You may want to weigh your own personal factors and maybe talk more to your hepatologist but these were some of the reasons around my decision to treat.  Slay the dragon.

[skersj]

Please don't let fear stop you. I had to learn how to swallow the pills because I hadn't taken medications in years. I have a phobia of ANY medicines and I was able to stay on treatment 72 weeks. The hardest shot is the first.

[joemc34606]

The effects of not treating this are much worse than the side of this medication. Like Aaron said hepatitis causes liver cancerand and cirrhosis. I would much rather treat foe six months than to end up with end stage liver failure. Have a biopsy done to check your liver condition and maybe you can wait until some new non interferon drugs come out. Remember some people have mild or no side effects, everyone is different. Good luck. Joe

[Aaron57]

You should have your liver condition checked first .. and then make a risk assessment ...

Some of the major risks of not treating are advanced liver disease and or liver cancer.

If you have no fibrosis , you have time to wait .. if you do have fibrosis F2 or above you may want to consider Tx ..

I'm 45 weeks into Inf/Riba Tx and going ok .. some lightweight Sx ...

No regrets at this time .

[Livinontheedge]

One more thing that just crossed my mind.  We are all scared, scared for our lives, & scared of the unknown.   And the only way to dump that 400 lb bag of worry and scared , is to just do it !   You will find out  that there will be peace once you get started :)   Hugs