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5901196 tn?1395547509

Scared and need knowlegeable friend(s)

Hello, my name is Dee and I was just told I have high ammonia levels in my blood today for the first time. Had never heard anything about ammonia before.
Been reading-the "fog"- confusion, forgetfulness, etc. is all there. I have been going crazy wondering why I can't remember things and stay confused about others. now I know.
I've been told I'm a "level/stage" 3, (hate the terminology), and there are only 4. I'm getting pretty scared now guys. Am I facing the rough stuff now?
24 Responses
Avatar universal
  Yes, it is time for you to get Treated, do you know what genotype you are?   There is a new med being approved hopefully by Dec 2013, called Sofosbuvir. Find yourself a Doctor that treats Hep C, and start setting things up.
  If you let it go too long, it is harder to cure,at stage 4.  Even if you end up having to have a Liver Transplant, you will need to get rid of the Hep C first, because even with a new liver, within months after the transplant, the virus comes back, and causes cirrhosis to happen again, only much faster...within a five yr span, so...Treatment is the thing to do~
  
5901196 tn?1395547509
  Thank you so much for answering me. I do have a Dr. and have been holding off on treatment waiting for this new one to get approved. I was a non-responder to ribavirin and interferon back in the mid to late 90's. After that nightmare, I couldn't see starting the meds they have now, when the new one is supposed to be way easier on the side effects.
  I haven't kept up with the Hep C community in a very long time. Thank God I knew where to turn, to you guys online, when her tone of voice, from the Dr.'s office, scared the baheebies out of me.
  Oh, I think I'm genotype 1, but not sure - memory n all. How important are the genotypes?
4206170 tn?1389690258
Hi Dee,
           The main reason (among others) of finding your genotype out is that it will determine your course of treatment most likely. Today, G1's have more options and higher cure rates than when you went through treatment. But as my good friend BoceprevirGal mentioned above, the new (non-interferon) drugs are literally at the door step of being approved by the FDA. And available for clinical trials NOW. The good news about these drugs is that their cure rates for all genotypes is 90%+...I was just seeing my doctor at the Cleveland Clinic and she said the new drugs WILL be available next year. One being a drug that had a 100% efficacy rate for all participants. And no grueling side effects like the ones you experienced on the interferon :)

But I also agree with BoceprevirGal that you should immediately seek treatment. I am sure with your current state of health that you would be immediately accepted to a trial somewhere. Just be good to your body right now. Eat healthy, don't drink or smoke cigs, go for some walks and get some exercise....Now is the time to get this done. But try not to worry, the medical field is making miraculous advances. Just a few weeks ago doctors successfully grew a piece of a human liver in a mouse. They said within in the decade we'll be able to grow organs for people. But even at your age your liver would try to heal itself and regenerate. Getting rid of the virus for even a short period of time would be extremely beneficial to your liver.

Avatar universal
Hi Dee..

Elevated amonia levels are very often a sign that in HCV patients the liver "basically " may not be working efficiantly and not able to eliminate this toxin from the body.

You did not state what your levels are however normal values are I believe in the 15-45 mcg/dl range .  I will re-check that.

Did your doctor talk to you about meds avail.to control  this and has there been signs or symptoms of " hepatic encephalopathy"  (below)


"ammonia levels rise when there are large amounts of protein being catabolized and the liver is unable for some reason to convert it into urea so it can be excreted through the kidneys. anything that interferes with the breakdown of ammonia in the system will increase serum levels. that includes such conditions as:
•hepatic encephalopathy
•hepatic coma
•hepatocellular disease
•portal hypertension
•severe heart failure with congestive hepatomegaly
•gi bleeding and/or obstruction with mild liver disease
•erythroblastosis fetalis of the newborn
•reye syndrome
•asparagine intoxication
•a genetic metabolic disorder of the urea cycle"


As far as waiting for the new treatment to be approved:

No one knows yet when any newer treatment other than the one currently avail will be approved.It at this point is specul;ation.

I would advise strongly that you seek out one of the treatments that "ARE "approved  given you have at least ST 3 fibrosis and possibly worse given  when the latest assesent of damage was done

The above tx. I mentioned are having anywhere from  45--92 % success rates and the variability is dependant on many factors . and condition of your liver is one of those as well what your classification on your last response was to Peg/Riba.(partial ,.null  ,relapser etc)

Good luck ..please keep us informed and welcome...
Will
4113881 tn?1415853876
I agree that you should seek out one of the treatments that are available today instead of waiting for the new drugs. You mentioned that you are a Genotype 1 and it is my understanding that when and if Sofosbuvir (Gileads new once-daily oral nucleotide analogue) is approved, a Genotype one will still have to take it in combo with Interferon and Ribavirin. It will only be all oral for a genotype 2/3. Yes, there are all orals in the pipeline but nobody can predict when they will be available and with you being a stage 3, there's no time like the present.

" The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection. "

http://www.gilead.com/news/press-releases/2013/4/gilead-submits-new-drug-application-to-us-fda-for-sofosbuvir-for-the-treatment-of-hepatitis-c
1840891 tn?1431551393
If I were in your shoes I would be uncomfortable about waiting even six months to start treating, UNLESS that is being recommended by a very good hepatologist. Drugs on the verge of approval have frequently been delayed for relatively obscure reasons and I wouldn't want to gamble with something this important. Are you seeing a good hepatologist? What is he/she recommending?
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