Trying to decide

[janandjerry]

Trying to decide weather or not to try the hep c treatment. I read the side effects, and was really scared with the serious ones. Can anyone tell me their experience with the treatment? And what should I know, before I decide? The doctor just said my virus numbers are high, and he recomends it...I've had it since 94 that I know of, but still have no symptoms to speak of.....and he said my exam was normal...

[janandjerry]

Thanks for the advise on the clinical trials!! I will look into it!

[janandjerry]

I'm gonna call when they get back from lunch, but I was just referred to him by my new MD. My MD found out I had it, and only did the test to see if the virus was live, then referred me to the GI. If I haven't had it, I will be getting it soon, no matter the cost! I need to know to proceed. I have a call in now to get copies of all my lab work, so maybe that will tell me more....?

[R Glass]

Call your GI and ask to speak to his nurse. Tell her you want to know what Gen type you have. I find it hard to believe they don't have this information.

[Trish77]

I echo nygirl.  If your viral load was done, your genotype should be there somewhere also.  Perhaps you can ask for copies of the results.

You might also want to look into clinical trials for treatment naive and they will do a biopsy for you.  It doesn't mean you have to follow through if the biopsy results tell you the clinical trial is not a good move for you but it's something to investigate.  Clinical trials are usually conducted by research centers that have a fair bit of expertise in treating people with Hep C.

Honestly, from all your comments, as many above have already said, this doc doesn't sound like he has a very solid knowledge in treating Hep C.  Believe me...you don't want a doc who doesn't know his stuff putting you on these drugs and managing your care.  

Good luck with sorting through all this.

Trish

[willbb]

Hi...you say you are  currently seeing a G.I., however some of them are surprisingly enough not that experienced with HCV and the treatment process(often because they deal with so many other maladies)That may be the case here as he has advised you to go ahead and treat without the benefit of telling you Geno type and a biopsy
.I am not sure exactly how the insurance issue would work for you there ,as I am in Canada (hopefully someone else will chime in) ,however a Geno type test must be done (if not already) to determine future treatment protocol.If you are like approx. 80 %  in North America you would have geno type1 then a biopsy should also be done to  access liver damage..to again determine if treatment is even necessary at this point or can wait for meds with better  efficacy in the future.

Sorry to hear about your husband...hope this all works out for you.

Will

[nygirl7]

You have to know what genotype you have before you do treatment.  Geno1 and 4 do 48 weeks and geno 2 and 3 typically only do 24.  That is a huge difference believe me.  If he knows what you VL is he certainly should have your geno they are always done together.

[janandjerry]

Thanks for the website!

I am seeing a GI, was referred by my MD. I think one of the reasons he wants to go ahead with treatment without the biopsy is, I don't have insurance...Go figure, my husband was killed 5 years ago, and I got some money so I decided to take a year off from work, and do some traveling, which left me without insurance, of course it's near the end of the year, and now even private companies have denied me insurance because of the diagnoses. The doctor referred me to the Pegassist program, and it looks like I qualify, so hopefully they will be able to help, but he is reluctant to biopsy because of the money, and is putting off the genotype until the program asks for it. I'm gonna ask him to go ahead with that, but afraid I can't aford the biopsy, will have to do somemore checking.

I'm soooo glad I found all of you!!!! It has been SO helpful to talk to people with the experince, and the encouragement and support is AWESOME!!!!

[Trish77]

I echo paen53.  I would investigate a different doctor.  My first doctor recommended I start treatment based on "high" viral load and without a biopsy.  As I started to investigate, I found out that viral load has little to do with what risk you're at and when I insisted on a biopsy, I found out I had very little liver damage and there was no need to rush immediately.  I went for a second opinion and got in with a very knowledgeable liver center and treatment team.  This is serious treatment to go into with a doctor who's not very knowledgeable or current on treating Hep C.

You need to know your genotype which your doctor should know if he has your viral load and which he should have communicated to you, another reason he doesn't sound very experienced with treating persons with Hep C.  Your genotype tells you duration of treatment recommended, it varies per genotype, along with other factors that may vary per genotype.  You need the biopsy to tell you how much liver damage you have and you need to learn about what treatment options apply to someone with your genotype and stage of liver damage and what it means to your life at this point in time and take it a step at a time - and get educated.  Pretty much what we all had to do when we started out.  

Good luck to you - as you can see, you've landed in good company and lots of help and support here.

Trish

[paen53]

My first reaction is to suggest to find a new Dr. Recommending tx based on viral load and a "normal" exam leads me to believe that he is not experienced with HCV. Like the others have said, you need a genotype and a biopsy (for starters) to  round out the complete picture. And someone that is on the ball as far as the new meds soon to be released.

Please don't let anyone push you into tx without all the missing pieces. It's not a rush situation by any means, plenty of time to sort things out.

Write down any and all questions that come up for you - and there will be many. Have them answered in a way that you understand clearly. Take along a freind or family member as an extra set of ears if need be to appointments. And keep copies of all tests, what have you, for your personal records. You may want to refer back to them several times as you sort out all the information.

And remember, you're not alone. All of us here have been in your shoes at some point in time. There's a wealth of collective information and experience gathered here.

Hang in there, Pam

[willbb]

new meds are avail imminently that will have much better results ( in the vicinity of 65-75%) "........

.meant to say for people that have not treated before ... data is showing approx.70  -80%(depending on various factors)  with the new meds.

[nygirl7]

A doctor who knows about hep would never suggest that you not do treatment over 800k because it might not work. Nor would they go by your viral load as it really has little if no relevance to what is going on inside. You need to find out what stage liver damage you have developed to make an educated decision. If you have very little damage you would have time to wait and decide. If however you were at the stage that I was when I was first diagnosed you would most likely want to treat aggressively.

Biopsy sounds awful but it's not. Tell your doctor he needs to find out your genotype and then ask for a biopsy. Also while you are at it tell him to let you know how your liver enzymes are. These pieces of the puzzle are priceless.

Good luck to you!!!!!!!


Treat ***** but it's doable for most of us - even on bad days it's much better then end stage liver disease. OH by the way I had no symptoms ever and was already at stage 3 - pre cirrhosis. Pretty shocked when I found out that!

[willbb]

Also you  may want to spend some time  educating yourself about what having HCV means.There arel many sites....I have listed one here.

Will

http://www.hivhepsti.info/documents/HepC1.newlydiagnosed_2010.pdf

[James10500]

The above 800 k they might not work is wrong.  In fact I don't know many people that started below 800 k.  Mine was 1.3 million.  

As far as geno 1, if you are G1 you are in luck new drugs are here and you chance of success now is about 75%. as noted by C-Man.

It's not the end of the world you can do it.  You are NOT alone !!!  Talk to us, these folks helped me get through it, and we can help you.

[willbb]

Hi there.. first of all are you under the care of a Hepatologist or a Gastroenterologist, if not your doctor should refer you to one. Then you should have a blood test that identifies Geno type ,as the treatment protocols are different ,depending on type. The Hepa or G.I  then should order a biopsy done as ,James says ,this is the only true test to give info. on liver damage(fibrosis)
Treatment success varies ,however as copyman has said, new meds are avail imminently that will have much better results ( in the vicinity of 65-75%)

Many people here are on treatment or have treated or are waiting to treat,. The side effects can be very mild to somewhat more severe,however very few can not do  it because of this.

  Treatment will not cause death ...however liver disease caused by HCV ......may.

Good luck..

Will

[Anne1717]

Hi - No one really can tell you what you will have for side effects, only what you MAY have. You may have some, all, or none.  

But James is right, you can't ignore this disease.  Little kids go through radiation and chemo, so you can do it.  

Most times the fear is greater than the reality and this is coming from me who has had pretty bad side effects.  Yes, I would do it again knowing what I know.

So, hop to it kiddo - take a deep breath, get your answers and line up your ducks.

[janandjerry]

yeah, it's the new drugs, and they are very scarey with so many of them saying "could cause death". It really makes you wander....

Thanks for the comments, this really helps. My mom and my daughter both told me the same thing about the posted side effects, just wanted to hear from someone that's been through it.

Thanks again!!!

[janandjerry]

No, haven't had a biopsy yet, was just told yesterday about the treatment. He just said my virus numbers were high...

Been doing some research, not sure of my geneotype yet either... I hear if your numbers are above 800,000 or you have genotype 1, that it might not work.

Is there anything else I should find out before I commit to this?

[copyman]

are you going to try one of the new drugs?

When I first read the side effects I said there was no way I could do it. I was scared out of my mind! The pharm companies have to list everything on the warnings, even if it happen only once out of thousands of patients.

Many of us treated and had just a few minor side effects. I don't think I have ever heard anything real bad with the treatment, and hope I never do!

If you are going to treat now is the right time with the new drugs.

Best of luck whatever you decide.

[James10500]

Well if you scared of HCV treatment, just think how scared you should be of end stage liver disease, or liver cancer.

Millions have done it.  Is it fun  ? No. But some people power through it, look at NYgirl 72 weeks missed three days of work total, some people are not that strong,and determined though.  I did it and I ain't super man.

You are sick with a serious illness, you can either address it or roll the dice.  I choose to "man up"do it and not whine while I did it.

What is the condition of your liver, have you had a biopsy ?