Hep C Discussion Forum

TazKat · Senior Member

RE: New Diagnosis and Introduction

globetrotter · Senior Member

Hi Rob

Welcome to a very comforting forum!!!

Its a crazy blur when you get such a diagnosis, i went into total information overload to the point that I had to walk away from researching so I could take stock.

I am on Incivek, Peg interferon and Ribarvarin and would not encourage this option as its a tough regime at times and the newer drugs seem to be very much more tolerable with great results.

My son did not contract HCV and my husband is also negative, as already mentioned, very hard to pass on through this way.

Take a deep breath as the initial shock does wear off and look at the info on this forum

Good luck Rob

Sally

Terry · Senior Member

Hi Rob

You have found a great place and welcome. I have had mine since I was twenty and had considerable liver damage but finished the treatment in Dec 2013 and am now SVR12 with normal liver functions so do not worry you will be fine. I also have two girls 18 & 21 and they were born while I had it and have never contracted it. You don't need to change your routine because I golfed and played baseball throughout the treatment and the exercise is good for you. The people here are great and will help you with any questions you might have.. Take Care Terry

Jener · Member

Hi Rob,

I'm genotype 1b and could not even think of taking Interferon.

My doctor put me on Sovaldi and Ribavirin for 24 weeks.

I've also seen in this forum people taking Sovaldi/Olysio/Ribavirin, but that is off label.

So, there are Interferon free options right now, if you want to start treatment.

Hang in there, and good luck.

Tig · Admin

Hi Rob,

I don't have much more to add, our two previous members did a fabulous job of explaining everything. The knowledge here continues to impress me. As Kristen mentioned, even the professionals are saying this is the time to have HCV if you're going to have it, because the treatment regimens are so effective and relatively symptom free. Compared to what I just went through, these new drugs don't offer near the sfx as the old SOC's.

I want to add that through research, the simple desire or fear of Interferon, qualifies as justification of "Interferon intolerant". It sounds like your liver is still in near "pristine" condition and you certainly have no reason to rush into treatment if you don't want to. I personally would consider waiting for the newest combo on the horizon, likely within the year, Sovaldi and Ledispavir from Gilead. It's going to be a co-joined once daily 12 week treatment, with almost no sfx and extremely high rates of success. No interferon and no ribavirin is awfully attractive! I'll include a link to some information. Good luck!

Tig

Sofosbuvir/Ledispavir

ION Trials

Enavigo3891 · Senior Member

Hello again Rob,

Glad to hear you have no signs of damage - consider it a blessing that you found out now as this virus can live in your body for decades before doing substantial harm. In regards to your viral load (VL) - this number really isn't important until you start treatment. I'm sure your doctor explained, it has no bearing on "how sick" you may or may not be. Your body duplicates the virus by the billions on a daily basis and your immune system does what it can to clear as much of it as possible and that number could be different by the day. There are people here who have/had VL counts upwards of 4-5 million and up and still showed no signs of the infection. Once you start treatment, that number going down is important as it will show whether your treatment regimen is working. Then ultimately it becoming undetectable and staying UND after treatment is the goal as that's when you can use those three wonderful letters... S-V-R! All the other numbers on your Liver Function Tests (LFT's) are what's important, such as ALT/AST's. Those are the ones that can indicate what condition your liver is in. I too have never had a liver biopsy as my LFT's were always in line with a non-infected healthy person despite having it my entire life.

I can imagine your wife's concern - she's obviously going to worry about you, perhaps be concerned about herself and your children. However (again hopefully your doctor explained) the chances of passing HepC onto a spouse or significant other in normal healthy relationships is slim. Regardless, having your wife tested (if not already done) may put her mind at ease! As for your children - hug them tight, they aren't going to catch it from you. My adoptive mother raised me from the time I was 16 months old - changed my diapers, took care of me when I was sick, cleaned up my skinned knees and broken bones, etc - she never "caught" it. You need direct blood to blood contact to contract it.

And to piggy back off what Wayne said, be your own advocate. In my opinion, the decision to treat, when to treat, and with that to treat should be YOURS with input and guidance from your doctor. It shouldn't just be your doctor's. A good doc will appreciate your knowledge, answer all your questions, and be your teammate in this. If you do come back as GT1 and fit the criteria for all label treatment, ask your doc. It doesn't hurt for your doc to request the approval through your insurance company. Or if you want more info on the interferon free treatments that should be coming for GT1's - ask about it. As I mentioned in my other post, I waited because my LFT's dictated I could. I remember seeing the doc in January of 2013 and he was so excited about "what was coming" and he himself said, unless you want to start treatment now I see no reason you can't wait to see if these new drugs are approved. My doc then called me in December of 2013, a day or so after Sovaldi was approved by the FDA to tell me the good news and ask if I wanted to schedule an appointment with him to discuss treatment with the new drugs. This is your body and your treatment - you have to have a say in what's going on. As Wayne said - if you're doc has a problem with that - go find one who doesn't!

So, welcome again - glad to have you around!

OldenSlow · Senior Member

Hi Rob,

First of all, welcome to the forum! You'll find a supportive and informative environment here. Read your original post in the other thread and I'll throw in my 2 cents. I/we know how upsetting the original diagnosis can be. Please be assured that will lessen as you become better informed and learn of the treatment options available to you. You and your wife have every reason to be not only positive, but downright optimistic. The newer treatments are proving remarkably effective, with minimal side effects.

I'm guessing your doctor mentioned the Sovaldi/Riba/Int regimen given the higher probability (roughly 75%) of you coming back Geno 1. Still, since treatment is genotype-specific, you'll need to have that info in order to proceed. Most physicians use the following guidelines:

http://www.hcvguidelines.org/sites/default/files/full_report.pdf -- Clicking on line 26 in the Table of Contents will take you to a treatment recommendation box that is currently being utilized.

As for challenging the expertise of your physician, YOU are your own best advocate. Learn as much as you can between now and your next appt. and don't be afraid to ask or challenge anything. If he has a problem with this, get another doc.

If indeed you have little or no liver damage at this point, you should have some flexibility with treatment timing. There are currently Interferon-free options available for genotypes 2 & 3. There should be another available for geno 1 before the end of the year. Things are moving fast and the future is brighter than it has ever been. To paraphrase a video I watched the other day: If ever there's been a good time to be diagnosed with HCV, that time is now.

Be well, my friend

wayne

Fireman Rob · Senior Member

Hi All,

Thanks for the kind words as I have already posted in another thread on this forum. I'm a 32 year old male recently diagnosed with Hep C. Five weeks ago, I participated in a blood drive at work and received a letter in the mail from the Red Cross saying my blood tested positive for the Antibodies. My surreal nightmare became reality on March 4, 2014 when I received the confirmation from my family doctor verifying that I tested positive for the virus.

After my first apt. with my Hep Specialist, the only logical explanation for contracting the virus is through a tattoo that I've had since 2004 (10yrs). My first visit with the specialist was brief. I was basically told I show no signs of liver damage and a biopsy isn't necessary right now. My blood work for the Genotype has been sent off and I should receive that info any day now. My initial blood test through the family doc revealed a minimal to moderate viral load (2 Million?). The treatment we are striving for is Solvaldi/Riba/Int if all goes well through my insurance and if indeed I'm Genotype 1. Either way it looks like Solvaldi is approved currently- Thank God!

I don't have to tell anyone here how difficult it is learning of this condition for the first time. My wife has taken it pretty hard as well. We are both trying to stay positive for our two little girls (three/seven months old). I have put a lot of research into this and have received a lot of valuable information and optimism here.

I have so many questions running through my head right now but I'll keep it brief. My main concerns are, if I am Genotype 1, I just hope my body tolerates the Interferon. All of my research on the side effects are creating a lot of anxiety right now. I'm trying not to stress too much until I learn which Genotype I have.

Last year I had a really bad reaction to an antibiotic (Levaquin) and it gave me tendonitis to a crippling degree for several months. I guess that's why I'm a little "gun shy" about pharmaceuticals. It was extremely hard to go from working hard everyday in great shape to stuck in bed for two weeks. I've also been thinking the Hep C probably contributed to the medication sensitivity to some degree. Either way, no more Flouroquinonolone antibiotics for me!

Second, I see many people on this forum that have been successful in obtaining the off-label treatment 12 week Solvoldi/Olysio through insurance. I have good insurance (for now anyway) and it's difficult for me to decide if I should encourage my doc for this and try for the off-label or stay with the approved 12 week Solvoldi/Riba/Int? Both sound like true miracle advancements for us all! The specialist seems to be up on these new treatments but he is the subject matter expert and I don't want to come across as challenging his expertise.

Thanks again for the kind words from the experienced guru's of this forum. Your kindness is truly impressive. It's so awesome to see there are people who care about others to the degree that I've seen here. Any words of wisdom are greatly appreciated, good luck everyone!

Rob

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