death sentence-?

i am hepc-1a- on pegasseys-180-6 months- yesterday had to stop treatment-total nemic -danger levevels- also doctor told me that all other treatment would have the same effect because they are based with interferon-i am a stage 3 out of 4 fib/cirrouse no future that i can see- anyone have any input-? -w.s.

[gauf]

What were your blood levels? Platelet counts?  Did they put you on rescue drugs? How long did you treat? Need all the details.

[nygirl7]

I don't know about that - I took Epogen for 69 weeks after a drastic plummet of my hemoglobin and did just fine.  Why with so much liver damage would a doctor consider NOT letting you continue on treatment...and instead put you on a reasonable dosage of the Procrit or Epogen?

No sense. No sense at all.

If you want to stay on treatment then go find yourself a hemo doc to prescribe it after why you ask your doctor why he wouldn't help you here?

[w.s.]

i was on propcrit and epogen for th whole24 weeks but it did not help in fact i must continueon these until i recover- my doctors are with yale and they claim they went way over the line in extending treatment with my condition- i at this point am just wondering if there are other tyreatment options-w.s,

[pigeonca]

I believe you can maintain your level of damage - and keep it from progressing - with traditional Chinese medicine (TCM) and a healthy lifestyle.  You don't have cirrhosis, and perhaps you never will.  Your life is hardly over.  Be well and enjoy yourself.  Check out Misha Cohen's website: www dot docmisha dot com; she is well regarded and not a quack,  IMHO.

[katerika]

I hope it's not a death sentence! I am a genotype 1a grade 3 stage 3/4. By 26 weeks I still hadn't reached undetectable, so 3 diferent Dr.s in 3 different hospitals said STOP treatment. And I did back in November. I was on weekly doses of procrit too. Well today I am feeling  98% better. I also have NASH. I know this is a silent disease, but worrying about it will not make it better.
I am experimenting with a common drug for the NASH, hoping some of my liver inflamation (inflammation) will go down, then I am planning on retreatment. There are new things coming down the pike. Always new trials. Also don't rule out new doctors. I love my Doctor, but I tell her "I don't want to leave any stone unturned," please send a copy of my file to Dr. A and let's see what he thinks. I saw my Dr. today and there is a study on Globimmune, it is a series of vaccinations that are suppose to build up your immune system, you start it before restarting treament. I need more info before I make up my mind. Then there is the Alina trials. So read read read.
Teri
So that is my blab for the day. Believe me there are some day's I feel like aaaaaaaaaaaaaaah. I want some answers and I want them now! I keep my scheduled dr. appt's and look up all I can before the appt. and then after. and just enjoy being upright the rest of the time. Best of everything to you.

[merryBe]

http://www.globeimmune.com/index.php?load=news&page=index&op=news_view&news_id=39

that looks cool, but you need to get into a trial at this point for it.

meanwhile you can use antifibrotics to slow down progression
http://www.medhelp.org/posts/show/346752

there is also transplant, but my doc said it could be years before I was sick enough t be on the list..(stage 3/4 now....  and then, with aa transplant I could live many more years, but of course, it would be nice to treat and get rid of the darn virus before transplant..otherwise you'd still have to treat for the HCV again at some point...

I think the best thing to do is everything possitive you can, NASh can be reversed. It takes work to lose weight,,,but as you lower your fat intake your liver will begin to burn its reserves also and so this is reversible.
the link above to HR's list, and Gauf has it on his home page deals with which supplements have real research showing inprovements to liver tissue...stick with them, as not everything claiming to be a rose really smells that sweet...

[Bill1954]

So sorry to hear of your treatment outcome. Ask your doctors about the current status of the drug ‘Taribavirin’, aka Viramidine. This is still not available on the shelf (to my knowledge) but check with them anyway. This was designed as a replacement for ribavirin, and completed phase 3 trials, but there were some problems with what appears to be more political than clinical in nature. Here is an overview from Liz Highleyman with hivhepatitis .com; including a press release from Valeant Pharmaceuticals:

http://www.hivandhepatitis.com/hep_c/news/2006/032406_a.html

I agree with other posters that this isn't necessarily a death sentence, but I'd be aggresively persuing other options. Someone else in here might have further info on Viramidine.

Best of luck to you in future attempts,

Bill

[Bill1954]

Aw, shucks! You know I’m always great, LOL!! Actually, we’re both great :o). You left some valuable information as well, I just elaborated on a drug that probably won’t pan out for w.s., but I thought it was worth mentioning, nevertheless. You never know about the docs from Yale- they just might have some Viramidine floating around in a desk drawer somewhere. It is very similar to ribavirin, but without the toxicity profile that ribavirin is known and loved for :o).

Talk to you around soon.

Bill

[merryBe]

on top of the earlier suggestions there are some new drugs dealing specifically with the NASH which wears the liver out sooner.  here is one, but you may want to run a search for NASH specific drugs.

Hcv-liver inflammation drug

CCO Independent Conference Coverage of the 2007 Annual Meeting of the American Association for the Study of Liver Diseases*
*CCO is an independent medical education company that provides state-of-the-art medical information to healthcare professionals through conference coverage and other educational programs.
Pioglitazone Improves Liver Histology in Nondiabetic Patients With NASH
Posting Date: November 08, 2007
Randomized, placebo-controlled, double-blind study
Summary of Key Conclusions
Treatment of nonalcoholic steatohepatitis (NASH) with pioglitazone for 12 months appears to improve hepatic histologic outcomes for nondiabetic patients
Hepatocellular injury, fibrosis, Mallory bodies significantly improved
Markers of liver fibrosis and inflammation reduced
ALT
Gamma glutamyl transferase (GGT)
Tissue inhibitor of metalloproteinase 1 (TIMP-1)
Trend toward improvement in steatosis and inflammation
Pioglitazone favorably affected indicators of glucose and lipid metabolism
Glucose, blood sugar, lipids
Longer-term evaluation of pioglitazone in nondiabetic patients with NASH recommended
Background
Prevalence
Nonalcoholic fatty liver disease (NAFLD): 20% to 30%
NASH: 2% to 3%
Leads to advanced fibrosis in 5% to 15% of patients
Few therapies exist
Pioglitazone
A thiazolidinedione
Active in diabetic patients with NASH
Antiinflammatory, antifibrotic, insulin sensitizing
Current study sought to evaluate safety and efficacy of pioglitazone in nondiabetic patients with NASH
Schematic of Study Design

Eligibility
Main inclusion criteria
Biopsy-confirmed NASH
Fat in liver > 5% plus liver injury and liver inflammation with or without scarring
Main exclusion criteria
Alcohol intake
Women: > 14 U/week
Men: > 21 U/week
Diabetes
Secondary NAFLD
Baseline Characteristics
Characteristic Pioglitazone
(n = 37) Placebo
(n = 37)
Male, % 70 51
Mean age, yrs 51 52
Mean BMI 29.8 30.8
Hypertension, n (%) 20 (49) 17 (46)
Dyslipidemia, n (%) 32 (89) 26 (72)
Mean liver enzyme levels
ALT, U/L 93.6 84.1
GGT, U/L 215.6 127.6
Mean histologic activity scores
Steatosis 2.35 2.28
Injury 1.86 1.69
Inflammation 1.36 1.22
Fibrosis 1.67 2.03
BMI, body mass index.
Description of Current Analysis
All patients counseled on proper diet and encouraged to exercise
Primary endpoint: histologic improvement
Steatosis
Injury/inflammation
Fibrosis
Secondary endpoints
Metabolic parameters
Liver enzymes
Serum markers of fibrosis
Histologic parameters scored from 0 (best) to 4 (worst)
Steatosis
Hepatocellular injury (ballooning/apoptosis/dropout cells)
Lobular inflammation
Portal inflammation
Mallory bodies
Fibrosis
Main Findings
Pioglitazone associated with significant improvements in several liver histology parameters compared with study entry and vs placebo arm at 1 year
Patients With Decreased Liver Disease at 1 Year
Histologic Parameter, % Pioglitazone
(n = 37) P Value (From Baseline) Placebo
(n = 37) P Value (From Baseline) P Value (Between Arms)
Steatosis 48 .001 37 .025 .193
Lobular inflammation 45 .043 27 .285 .25
Portal inflammation 27 .67 23 .42 .25
Hepatocellular injury 32 .09 10 .04 .005
Fibrosis 29 .006 20 .081 .05
Mallory bodies 26 .005 3 .8 .004
Pioglitazone treatment vs placebo associated with significant differences in several secondary endpoints
Parameter Pioglitazone
(n = 37) Placebo
(n = 37) P Value
Weight, kg 0.55 2.77 .017
Glucose, mmol/L 0.4 0.1 .024
HbA1C, % 0.16 0.18 .013
C peptide, pmol/L 42.0 78.2 .015
Dyslipidemia, % 3.4 14.8 .05
ALT, U/L 10.9 36.2 .009
GGT, U/L 9.4 41.2 .002
Ferritin, mcg/L 11.3 90.5 .012
TIMP, ng/mL 76.6 10.4 .011
P3NP, ng/mL 2.5 0.4 .055
Other Outcomes
Rate of treatment discontinuation comparable between arms
Pioglitazone: 6 (16%)
Placebo: 7 (19%)
Most common reasons for discontinuation
Pioglitazone: diabetes (n = 2)
Placebo: weight gain (n = 2)
Adverse events more common on placebo arm (P = .03)
Pioglitazone: 19 (51%)
Placebo: 29 (78%)
Most common adverse events
Pioglitazone: ankle swelling (n = 2)
Placebo: right-sided ache (n = 2)
Reference
Aithal GP, Thomas JA, Kaye P, et al. A randomized, double blind, placebo controlled trial of one year of pioglitazone in non-diabetic subjects with nonalcoholic steatohepatitis. Program and abstracts of the 58th Annual Meeting of the American Association for the Study of Liver Diseases; November 2-6, 2007; Boston, Massachusetts. Abstract 132.

[HARRYBEADS]

  Seek a second and third opinion. It's not the end, did they try procrit and or reduce the ribavarin. Ribavarin reduction worked for me, just one pill less per day.
How were you responding?Where were you treating?

Harry