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Post Info TOPIC: New Here...Need advice...very scared
Rubye


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RE: New Here...Need advice...very scared
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Hi Taylor, 

We have a bit in common in that my mother also had Hepatitis C. She did Interferon a couple of times but to no avail. I watcher her during treatment and vowed I would never do Interferon and never did. I just knew I would not be able to make it through that treatment. I finally did treatment, with Sovaldi and Olysio, and completed it this past January. At present I am undetected. The treatment was a bit difficult for me but the majority of people had no problems at all with it. I think my problems stemmed from my cirrhosis, being 67, having no muscle mass, and having previous arthritis and IBS. Mainly, I had a lot of nausea but they gave me a med, Zofran, that made it all tolerable. I feel very lucky and very blessed to have successfully completed treatment. If I can do it, you can too. smile

As far as doctors and treatment go, I think an Internist is fine. To me it is more important to work with someone who treats me decently and also, just because a person is a gastroenterologist does not mean he knows any more than an Internist when it comes to treatment. Because I have cirrhosis I do occasionally see a hepatologist but am looking for a new one because I always feel demeaned and patronized with this guy. I did get my Hep C from drugs in the early 70's but have done no drugs since then. I was in college and it was a phase for me. I know what you mean by being treated differently and we should by no means have to put up with that. So, I think your Internist is just fine. 

Personally, I would go for treatment as soon as possible because the longer you wait the more damage the Hep C can do to your body. I developed neuropathy just in the last couple of years for example. You can do this!



__________________

UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.
Zlikster


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Hi Taylor,

i had to change several docs/hepatologists, until i have found a proper one. I had similar "treatment" from some docs. I never did IV drugs, but they treated me like i am drug addict.
So you did biopsy and you have grade 2 inflamation stage 3 fibrosis? I am "only" F1/A1 (from Fibroscan score thp), but it still bothers me.
Let us know your fibroscan score and try to find a decent GE/hepa doc you can trust. As Tig said, trust is very important.
As i mentioned, since you are treatment naive, Sovaldi+Riba for 12-16 weeks and your chance is over 90%. I would go for it, if your doc thinks you will tolerate Riba well.

best



__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
SwimmerChic


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Hi Taylor,

Everyone has done a great job of explaining what treatments are available and in the works, so I'll just say "hi" and welcome. You've had a rough few years.  This is a great place to find supportive friends and great advice.

 

Cheers!



__________________

57 year old, Genotype 1a, IL28B TT, 883,000 VL (5.95 Log IU/mL), F0, AST 46, ALT 47,
Dx 19-Apr-2013
Harvoni started 06-Feb-2015

09-Mar-2015 labs: VL <15 (NORMAL), AST 18, ALT 13
Tig


Admin

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Hi Taylor,

Welcome to the forum, I'm glad you're here. It's a difficult time and we all understand how you're feeling. Sometimes the stress of not knowing is more than you can handle on your own. I hope we can be here to help you through the experience that is Hep C and it's treatment. It is far easier than it has been, so I encourage you to consider the opportunity.

Regarding your "Stage 2/3" information, how was that determined? Have you had a previous Fibroscan or biopsy? There are two things that can be classed by biopsy, the inflammation score and the fibrosis stage. They are listed as A0-4 for inflammation and F0-4 for fibrosis. If you had a biopsy a 2/3 could be A2/F3, if it's the Fibroscan, then F2-3 is more likely (as was previously mentioned).

The new treatment on the horizon, Sovaldi and the current investigative drug GS5816 (Gilead) is good across all genotypes, few side effects and very effective. It should be on the market in the next year or so. They are currently in the final Phase 3 trials. Aside from that, the Sovaldi and Ribavirin protocol is also excellent, tolerable and only 12 weeks. However, the Ribavirin as mentioned has some side effects that you will have to discuss with your doctor. But it's totally doable! Genotype 2 is one of the easier to treat. Treatment success rates for many genotypes have increased dramatically recently and will continue to improve. So whatever your decision, you should do very well. So relax about that! 

If you can see a Board certified Hepatologist, I would. Hepatologists, followed by Gastroenterogists, followed by an Internist would be my choice if given one. All should be Board certified. A Hepatologist is more schooled in the liver specifically, especially HCV, the GE second, etc. It will depend on what you have available and are comfortable with. The GE doctor that has pressured you to admit to something you haven't done (IVDU), would be the first one off my list. It's important to be comfortable with your doctor, his office staff and vice versa. Trust is very important! So find someone you both like and trust. 

Keep us informed of your results when you get them. I'd like to point out our search function on the top. We have some information in our Knowledge section on the abbreviations we use here that you will find useful. If you have any questions please feel free to ask. We're here to help you through this!

Tig        



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Miracleinprogress


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Zlikster wrote:

Yes...that is what I meant. Fibrosis grade 2 stage 3. I was at a stage 1/4 for many years. Still waiting on my fibroscan and VL. Hope to know those tonight. I really am hoping for a "cure" and am well aware of the term, "Slaying the dragon."Been back and forth on forums for many years now but stopped since the Hep C seemed to be pretty much controlled. I don't have a hepatologist just an internal medicine dr. He's been treating others as well. Should I change and get one? I did have a gastro dr but every time I visited him he asked me if I ever did IV drugs and pushed, and pushed. I never did and I didn't like being treated that way so I stopped seeing him. Dr's need to have a good bedside manner if you ask me.

I'll post when I have all results in. The only thing I know is I went in for a urinalysis on urine and they found UBG-bilirubin in there. Never had that happen that I'm aware of. Maye that was a sign to push it into gear and getter done! Thanks for the responses. Good to know this board is alive. I might need you guys more than you know.

 

Hi Mir,

don't worry. You are (if it can be said) lucky to have genotype 2 since it is the easiest genotype to treat. You could go for short 12w Sovaldi+Ribavirin therapy or if your doc think you can afford to wait for some new therapy without Ribavirin (eg. Sovaldi+GS-5816) then you can have even easier ride. Not sure about fibrosis number you mentioned, could be that it's Fibrosis grade 2 stage 3, which might opt you in to start therapy straight away. Talk with your hepa doc/insurance for your options.  Sovaldi+Riba for 12 weeks for GT2s chances are well over 90% for treatment naive. Sovaldi on it's own doesn't have any noticeable side effects, Riba on other hand can after some time cause slight depression or rage episodes and reduces your energy levels (cause of low hgb/rbc), but since you will be only for 12 weeks on it, you will prolly be fine. Check with your doc regarding your depression/anxiety suffering and possible Ribavirin side effects. I spent my last (failed) therapy on Riba+PegInt for at least 2 months (out of 6) mostly alone and i was ok with it. Interferon was pretty nasty in my case, but i tolerated Riba pretty well. Consider yourself lucky not going thru Interferon injections. I myself have plan to go thru Sovaldi+Ribavirin therapy pretty soon. To reclaim finally my liver back :)

sorry for the all you had to go thru in last couple of years, but after you go thru treatment, which will be short and easy, and after your liver recovers, i bet your energy levels will get better and quality of life will improve :)


best









-- Edited by Zlikster on Monday 16th of March 2015 10:11:51 PM

 



__________________

Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
Zlikster


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Hi Mir,

don't worry. You are (if it can be said) lucky to have genotype 2 since it is the easiest genotype to treat. You could go for short 12w Sovaldi+Ribavirin therapy or if your doc think you can afford to wait for some new therapy without Ribavirin (eg. Sovaldi+GS-5816) then you can have even easier ride. Not sure about fibrosis number you mentioned, could be that it's Fibrosis grade 2 stage 3, which might opt you in to start therapy straight away. Talk with your hepa doc/insurance for your options.  Sovaldi+Riba for 12 weeks for GT2s chances are well over 90% for treatment naive. Sovaldi on it's own doesn't have any noticeable side effects, Riba on other hand can after some time cause slight depression or rage episodes and reduces your energy levels (cause of low hgb/rbc), but since you will be only for 12 weeks on it, you will prolly be fine. Check with your doc regarding your depression/anxiety suffering and possible Ribavirin side effects. I spent my last (failed) therapy on Riba+PegInt for at least 2 months (out of 6) mostly alone and i was ok with it. Interferon was pretty nasty in my case, but i tolerated Riba pretty well. Consider yourself lucky not going thru Interferon injections. I myself have plan to go thru Sovaldi+Ribavirin therapy pretty soon. To reclaim finally my liver back :)

sorry for the all you had to go thru in last couple of years, but after you go thru treatment, which will be short and easy, and after your liver recovers, i bet your energy levels will get better and quality of life will improve :)


best









-- Edited by Zlikster on Monday 16th of March 2015 10:11:51 PM

__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Gator Man


Senior Member

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Hi Taylor,

You have come to the right place and we are here to help. Take a deep breath, relax and know there are answers and effective treatments.

For treating genotype 2 HCV, Sovaldi and Ribavarin is recommended and has a success rate of up to 93% The treatment is well tolerated and the duration is 12 weeks, one Sovaldi pill and Ribavirin prescribed by the patient's weight twice a day.

If your degree of fibrosis was F2/F3 back in 2011, you have liver inflammation, that along with Hepatitis C, can explain problems like fatigue and brain fog. Elevated liver enzymes are also typical at this point. None of your current symptoms necessarily mean that you have to progressed to a more advanced fibrosis stage. Your doctor may suggest a Fibroscan or liver biopsy to better stage your degree of fibrosis.

You are not a wimp, just frightened as we all were  when diagnosed or learned that are disease had advanced. You should do well with treatment and will discover that generally your enzymes, fatigue and other problems improve, even early in treatment. Once you have "slayed the dragon" as we refer to beating Hepatitis C, there is also the promise of fibrosis improvement over time.

I know this is a lot to absorb, but you have every reason to believe that you will beat this disease and resume a normal and healthy life down the road.

john

 



__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Miracleinprogress


Member

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I am also very analytical and I do my research. Not always a good thing.



__________________

Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
Miracleinprogress


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I don't know where to start actually. My mom started bleeding while she was pregnant with me so bad that they rushed her to the hospital and transfused her. They gave her blood that was tainted with Hepatitis. Back in 1963 there wasn't a known "C." Well she had Hep C. Lived to 86 and passed a few years ago but not related to the Hep C.

So for the most part, it may be that I got this from her. I am 51 almost 52 so been carrying it all my life. If not, the only thing I can think of is a dentist that cut me and cut his finger "Saying oops" that could have caused this. I used to donate blood but not after 1990.

Last exam was in 2011 with Genotype 2b and viral load was 185,000. Wouldn't that be undetectable? Fibrosis was at 2/3. Not sure how to write that one out. Stage 2 but 3 as in damage?

But anyways, been fatigued for years now but I suffer from depression and anxiety. My mom passed in Oct 2012 as well as my sister 2 weeks later and my husband was cheating at this time as well so emotionally, I have been a wreck for a few years. I am fatigued but can still get things done. I do have some brain fog and just can't concentrate.

I had some pains a few weeks ago and went in to get some bloodwork done. I don't have all the results yet but Dr's nurse did say my enzymes were elevated. Seemed to mean they were more than slightly elevated. He wants me to go on treatment. I am scared to death! I do not taking drugs and even antibiotics I start out with a half a pill and go from there. I'm really a wimp. I have been waiting for better treatments to come around and now it seems like they are. I don't think I can take Harvoni because of my genotype and if I remember correctly, the Dr. said Sovaldi and Ribivarin? I don't know what to do. I don't have a support system here at home and am mostly home alone. I'm afraid of side effects, panic attacks, all that stuff. I just need advice...good or bad...I really am scared to do this but even more scared not to. (If that make sense. Thanks!



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Genotype 2b. Not in treatment yet. F4-Cirrhosis (they say) Unknown years. Could be 51 or 35 years.
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