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Author Topic: Confused  (Read 10780 times)

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Offline imscared

  • Member
  • Posts: 4
Confused
« on: July 08, 2014, 08:05:33 am »
I was diagnosed 15 years ago with Hep C, the doctors couldn't figure out how I contracted the virus, my past was not perfect that's for sure, but was never an IV user have no tattoos, no piercings, no blood transfusions, sexually was the only thing they could think of.  I am now starting to see a liver specialist because I want to be cured. I am Geno type 1a and fibro., test is F3. says my liver is functioning good but have a touch of cirrhosis. I am so scared to start treatment, because there is a lot of depression and mental illness in my family, I to suffer from depression, I am caring for my 2 year old grandchild and my daughter that has been diagnosed with paranoid schizophrenia. I have another daughter with 2 babies that I help a lot. I hear so many bad things with the treatment and what scares me the most is what it can do, cause depression, don't like needles. Everyone is talking about the new treatment that has almost no side affects, but its not covered as of yet, some doctors are saying eventually it will be covered, talking maybe 6 months or so. I don't know what to do. I am also weening off methadone been on it for over 10 years, started it for drug use but as soon as i started it never went back I don't drink but my liver still got hurt, why would this happen? When I started methadone the doctor said it was better on the liver and wouldn't cause any damage, not sure how true this is. Can someone please help me out with some of your own theory's, or experiences.

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Confused
« Reply #1 on: July 08, 2014, 01:05:32 pm »
Hi,
Everyone is different on this disease. I have had this for over 40 years with no treatment except good diet and herbal supplements. I am at the same stage as you but I don't think I have any cirrhosis. I decided it is time for treatment for me.
I am on my 5Th day of Solvaldi/Ribavirin, and it is pretty smooth so far. Just a little leg kick in the evening, and you may relate cause it is a symptom of withdrawl from opiates too. I went thru all that and more.
If you get treated, seems the Solvaldi/Olyisio combo is best now for Gen 1A and not too much side effects. Interferon is the one that will most likely cause depression symptoms so seems best to avoid it, and trials show success without it.
I am Gen 1B , decided to go with the solvaldi/Ribivirin if insurance covered it, and they did so I will post from time to time. There are others that have completed their treatment, so check their experience.
In my opinion you should not wait too much longer.
Thanks

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 317
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Confused
« Reply #2 on: July 08, 2014, 02:07:09 pm »
Hi,

Dont be too nervous.  I agree with rainbowray that the drugs are very tolerable now, and the treatment times are shorter, you should be fine.  I would suggest a 'buddy' to partner with.  Someone that knows your drug schedule and keeps up with you during treatment.  It can seem lonely just counting the pills and the days, but the emotional swings are much less of a threat than during the Incivek treatments.  And if you can avoid interferon, even better.  Also, post here in this forum as often as you want.  Good people here that have been through all sorts of Hep C treatments, and lots of us that are proof of it is worth the effort.  If your Doc thinks it is under a year to get you covered by a current easier treatment option, I suggest it is worth the wait.  Hep C is not a fast moving virus, but even without alcohol (as you asked), it does attack the liver. 

Good luck, and keep us informed,
jack

Offline imscared

  • Member
  • Posts: 4
Re: Confused
« Reply #3 on: July 08, 2014, 03:28:19 pm »
Thank all for your support. Sounds like I need to stay away from interferon. I don't no the newer drugs out or if there covered. This is making me sick worrying. The doc said my enzymes are good liver fuctions are good. So a friend of mine suggested I use a herbal liver cleanse until the newer drug is available.  And covered. O I forgot to also ask if I do this treatment does it repair the touch of cirrhosis? Is there any1 with the exact same as me geno type 1a with a touch of cirrhosis?

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 317
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Confused
« Reply #4 on: July 08, 2014, 03:37:20 pm »
Hi again,

I am 1a, with mild scarring of the liver. The liver can improve, but some damage is permanent.  From the Mayo Clinic: "Cirrhosis occurs in response to damage to your liver over many years. The liver damage done by cirrhosis can't be undone. But if liver cirrhosis is diagnosed early and the cause treated, further damage can be limited." A healthy diet, perhaps milk thistle, might help a little, but the real help comes from getting treated.  If you can find a 12 week option, even with interferon, go for it...  I did 72 weeks of interferon, so you can get through 12 weeks!
Hope this helps, jack

Offline imscared

  • Member
  • Posts: 4
Re: Confused
« Reply #5 on: July 08, 2014, 03:47:06 pm »
I was told I have to do 48 weeks of interferon I am not sure if I would sure if I can do it now that I have people here that have gone through it gives me some comfort ty for the support

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 317
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: Confused
« Reply #6 on: July 08, 2014, 03:52:00 pm »
Hmmm, I for one think that is crazy! No one should have to do 48 weeks of interferon now, in my opinion.  What treatment is being suggested?  Just the dual therapy?  A triple therapy?  Interferon & ribavirin + ?

Let me know,
jack

Offline Mike

  • Member
  • Posts: 999
Re: Confused
« Reply #7 on: July 08, 2014, 04:03:42 pm »
I'd stay away from anything that supposedly cleanses the liver. Scientific research consistently shows that these are of no benefit and can, in some instances, cause liver damage.

Avoiding alcohol and a healthy diet is the best thing you can do for your liver.

The answer regarding liver rejuvenation is "maybe." This gets a little complicated when scarring is present (which is what cirrhosis is - scarring of the liver tissue), as scar tissue does not rejuvenate.

For example, my mother has a rare form of cancer and had 2/3 of her liver removed due to a small tumor and it's particular location. In discussing this with the surgical oncologist , it was learned that the the liver would rejuvenate within 6-9 months  and return to it's normal size (or close to it), which it did. The reason for this is that the 1/3 of the liver that was not removed was healthy liver tissue and cells, and these, in fact rejuvenate.

When the liver has scarring due to hepatitis, the whole liver is damaged, not just a portion. Since scar tissue/cells don't revert back to their normal state before the scarring occurred (rejuvenate), any scarring present in the liver will not be repaired.

Please note, however, the remaining liver tissue (tissue/cells without scarring) can rejuvenate which, in turn, can improve overall liver function.

That's why treatment can be so important. If you clear the virus, the liver damage stops and tissue and cells can start to rejuvenate.

I'm genotype 1a with F2 fibrosis. I just finished treatment and I'm awaiting the result.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mike

  • Member
  • Posts: 999
Re: Confused
« Reply #8 on: July 08, 2014, 04:11:37 pm »
I'm with Jack - you should not have to do the old 48 week treatment - not in this day and age.

I would encourage you to question this and ask your doctor why you are not a candidate for a Sovaldi-based 12-24 week treatment protocol. If you doctor can't answer this, I would get a second opinion or change doctors!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Confused
« Reply #9 on: July 08, 2014, 04:31:39 pm »
(Don't Be) Scared
I'm in agreement for you to seek non-interferon treatment. With your family history you should be classified as Interferon Intolerant, therefore your doctor can choose other alternatives. For Gen 1A  Solvaldi/olysio is the best at this time. In 4-6 months new combos are coming that may be better.
I wanted to comment on your Methadone question. If it causes damage to the liver it is probably small compared to what the virus does. Since it is a drug, the liver has to metabolize it so it makes the liver work a little harder. The virus is what is "eating" at us who have hepc, and it is what is causing fibrosis.

Offline Mike

  • Member
  • Posts: 999
Re: Confused
« Reply #10 on: July 08, 2014, 07:27:52 pm »
Methadone, as with most narcotics, are not known to cause liver damage even with long term use. Some narcotics, however, such as Vicodin and Percocet, contain Acetaminophen (the active ingredient in Tylenol) which can harm the liver with long-term use or overdose. This is one of the reasons methadone is used to treat chronic pain. (It's secondary use is to treat opioid addiction and withdrawal symptoms).

Knowing this, it is likely that the Hep-C infection led to the fibrosis.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline imscared

  • Member
  • Posts: 4
Re: Confused
« Reply #11 on: July 08, 2014, 10:06:54 pm »
I am seeing my nurse on Saturday i am going to tell her to find another option for me, something in my heart is telling me to stay away from the 48 weeks of interferon and a mix of others.  I'm not sure of all of it yet, I will see what she says when I see her. I even saw my Methadone doctor and she even said why am I doing this treatment when there's a better one with almost no side affects, she made me question it more, and now I hear it in this forum from a few, thank you all so much. I haven't been able to sleep or eat for months, what scares me so much is not being able to care for my grand child and my daughter that need me yes if I don't take care of my health I won't be able to , and I told the doctor this I begged him to help me go for the newer treatment, even if I can wait 6 months or so. It will make my life so much easier. When I get the names of all the meds I will let you know and see what you think, and I do think i will get another doctors  opinion.

Offline willie g

  • Member
  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: Confused
« Reply #12 on: July 08, 2014, 10:34:17 pm »
HI,YOU HAVE EVERY RIGHT TO BE CONFUSED AND AS YOU CAN SEE YOUR NOT ALONE. YOUR JUST IN THE DESERT RIGHT NOW AND ITS A CRAPPY PLACE TO BE, BUT YOU AND I HAVE BEEN THER BEFORE AND HAVE WE GOT TO THE NEXT DAY?[YA I KNOW,SOMETIMES WE HAVE WISHED IT HADNT] I AM ON MEDS TOO AND IF YOU READ ANY OF MY POSTS YOULL SEE WHY. SERIOUSLY I WAS IN A VA HOSPITAL FOR ALMOST A YEAR UNTIL I GOT A WEEKEND PASS AND OFF I WENT.I HAD SHOCK THERAPY BACK THEN,NOT THE PLEASENT KIND AND IVE BEEN ON JUST ABOUT EVERY DRUG LEGAL AND NON-LEGAL AND YES ONE OF THEM WAS METHADONE AND YES IVE BEN LABLED THIS AND THAT BUT YOUR HERE ON THIS SITE IN THE PLACE YOUR AT FOR A REASON AND I ASKED MYSELF FROM DAY ONE WHY/! I STILL DONT KNOW BUT I CAN TELL YOU THIS YOUR IN THE RIGHT PLACE AT THE RIGHT TIME. THIS FORUM IS GREAT! MODERATOR GREAT! STRUGGLING FOLKS LIKE YOU,GREAT! I know your thinking GREAT MY ASS! BUT YOU FOLLOW THESE FOLKS STORYS OF LOSSES AND TRIUMPHS AND UNREAL KINDNESS AND THAT AALONE WILL GIVE YOU HOPE. HANG IN THERE YOULL BE OUTA THAT DESERT SOON. IM PRAYING FOR YOU RIGHT NOW.BREATH IN AND OUT AS IM SURE YOU HAVE DONE IN THE PAST,KEEP PRAYING, KEEP THE FAITH THAT GOT YOU TO THIS POINT IN LIFE  AND NEVER NEVER GIVE UP.  WATERS COMING, YOULL THIRST NO MORE  .IT SUCKS BUT SOMEDAYS ALL WE CAN DO IS TAKE BABY STEPS.BUT AT LEAST WERE STILL STEPPING. WILLIE G

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Confused
« Reply #13 on: July 11, 2014, 02:31:00 pm »
Imscared - you are asking good questions, and your fear is a normal emotion. I like your idea of talking to the nurse about other choices. I encourage you to talk to her about Olysio/Sovaldi and to avoid interferon and ribavirin. The difference between Olysio/Sovaldi and treatment using interferon/ribavirin is like day and night. A lot of people on this forum are taking Olysio/Sovaldi, and I think you would be pleasantly surprised by their experiences.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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