Hepatitis C Community
HEP C - I was given no treatment
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

HEP C - I was given no treatment

Hello. I'm 21 years old, EU citizen. I have Hep C with liver cirrhosis and splenomegaly. My Hep C was discovered 10 years ago and since then I've been feeling OK. I had portal vein hypertension which caused me to have esophageal varices which in turn ruptured and I almost died due to internal bleeding but they were taken care of and for the past 6 years I've been on a treatment which is: Betablockers (Propranolol) + Sylimarin (Hepatoprotect) + ursodeoxycholic acid (Ursidol).

My condition is pretty standard: a pretty steady liver, everything is ok.
I did not receive any attempts at any treatments. I keep reading about these ribavirin and interferon and new drugs and combinations and things but I still haven't received any treatment. I go to see my doctor every 6 months and I asked and I didn't really understand why won't he give me any treatment option.

He signed me up on the transplant list instead.
So I ask you: which are the common causes for which I could be refused the treatment?

My blood-tests came ok, I had low hemoglobin though. I recently had a complication which was a build-up of ammonia in my blood for which I took some terrible tasting medication and everything seems fine now.

I'm otherwise pretty healthy, go to the gym, swim, run, in college. Follow the other rules though: no alcoohol and I try to eat healthy although I pretty much... don't.
Related Discussions
9 Comments Post a Comment
Blank
Avatar_n_tn
I asked and I didn't really understand why won't he give me any treatment option.


Keep asking until you understand your country's treatment policy and/or the health reasons why you're not a suitable candidate.  

Pro Tip:  If your HGB is already low, you're already behind the curve.  Ribavirin will lower it more, and if your national treatment plan doesn't allow for rescue drugs to stimulate red cell production, treatment could be dangerous to your health.  
Blank
374652_tn?1311302831
You might try hepcnomads another online hep c support in europe, they are great
Blank
87972_tn?1322664839
Hi,

I agree with Fnzol; you need to discuss this with your medical team to fully understand their reasoning.

At 21 years of age it’s fairly unusual to have as much progressive damage as you do; generally it takes years and even decades to develop cirrhosis.

From your description it appears you have what’s called ‘decompensated’ liver disease. It is very difficult to treat a person with this much liver damage; the manufacturers of the drugs, along with most knowledgeable doctors recommend against interferon-based therapy with advanced cirrhosis. This should be confirmed with your doctor; but I imagine this is the case.

Good luck with your liver transplant-

-Bill
Blank
Avatar_m_tn
You might try hepcnomads another online hep c support in europe, they are great

   Haha  ....might open a can of worms here eh Mary. :)
Blank
374652_tn?1311302831
Oh is that a no no, I love worms,
Blank
446474_tn?1404424777
Bill is correct. You will not be treated anywhere because your liver disease has progressed to decompensated cirrhosis. Interferon and can cause acute liver failure or death in patience with decompensated cirrhosis. The drug manufactures warning against using these drugs on patients with decompensated cirrhosis. Your doctors are following standard protocols. This has nothing with being located in the EU. The same would happen here in the US or anywhere else. Unfortunately there are no treatment options at this point. The only hope for recovering your health is a liver transplant I am sorry to say.

HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use
PEGASYS safely and effectively.  See full prescribing information for
PEGASYS.  
PEGASYS (peginterferon alfa-2a)  Solution for Subcutaneous Injection

------------------------------ CONTRAINDICATIONS ------------------------------
 Autoimmune hepatitis
 Hepatic decompensation in patients with cirrhosis

----------------------- USE IN SPECIFIC POPULATIONS -----------------------

 Hepatic patients: Clinical status and hepatic function should be closely
monitored and treatment should be immediately discontinued if decompensation occurs
------------------------------------------------------------------------------------------------------------------------------
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use
COPEGUS safely and effectively. See full prescribing information for
COPEGUS.  
COPEGUS (ribavirin) Tablets

PEGASYS/COPEGUS: Patients exhibiting the following conditions should be
closely monitored and may require dose reduction or discontinuation of
therapy:

 Risk of hepatic failure and death: Monitor hepatic function during
treatment and discontinue treatment for hepatic decompensation

Cheers!
hectorsf
Blank
Avatar_m_tn
What country are you in - It's very odd for someone to introduce themselves as 'an EU citizen' rather than saying which country they are a citizen of. It sounds like you should have received treatment while your liver was still in good shape (although of course, your country may not have been a member of the union at that time) - but it sounds like transplant is the way to go - and as a 21 year old in the EU you should get decent priority on the list.
Blank
Avatar_m_tn
I just checked with the doctor and yes, I have decompensated cirrhosis. I was not aware of this because I didn't knew 9 years ago (when I had a gastroesphageal bleeding) that this was a sign of decompensation. Other than that I'm just like your ordinary college guy.

I've been diagnosed with this 9 years ago, was discovered because of the bleeding. Since then, I've been stable with no other symptoms (no jaundice, no ascites or others).

Why did I present myself as an EU citizen? Because I have 3 citizenships. Sweden, Italy and Romania (don't ask me how I managed that, I was born in Italy, parents are Swedish, we're living in Romania but I'm doing college in France and planning to stay here so I guess I'l be a French citizen too? How should I have presented myself ? (Hello, I'm from A,B,C,D - you pick)? Anyway. I'm now back in vacation in RO), spent time in all countries and it doesn't really mater what citizenship you have and where, as far as I'm aware of I could hop in the car and just move to France like you move from New York to San Francisco). That's not important.

What's important is that you're all wishing me a happy transplant day: that's not going to happen. Yeah the doctors have signed me up for transplant like 6 years ago if I recall correctly, I didn't really knew why back then because I was 15 but... since then I've been on that list. I've no idea, does it usually take this long? Anyway I'm not really sure I would accept a transplant if it comes anyway, a life-long of immunosupressors sounds worse than what I'm living with right now. I mean hell, I haven't been sick, not even a cold, in 3 years. A transplant will just have too many side effects, risk of being rejected, life-long medication... pfff for what? Another 15 years? I've been living with this "decompensated" liver for 10 years, I'm sure I can pull off at least another 10 years (maybe if I quit smoking even more..).

Anyway, there's a new hope for me because of a new NON-interferon/RBV treatment.
Read more here: http://hepatitiscresearchandnewsupdates.blogspot.com/2011/04/breakthrough-non-interferonribavirin.html

So maybe there's a chance I can get rid of this thing, even if its decompensated, without IFN-RBV :).
Blank
Avatar_m_tn
oh and sorry I said 10 years the first time, I just did the math wrong, it will be 10 years only in late autumn this year, so far it's only 9 :D
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
This is Driving Your Emotional Eati...
Jul 02 by Roger Gould, M.D.Blank
5856747_tn?1403352282
Blank
Sleep Apnoea
Jun 28 by Andrew John Rynne, MDBlank
Top Hepatitis Answerers
Avatar_f_tn
Blank
dontworry_behappy1
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
Avatar_f_tn
Blank
nan535
Brooklyn, NY
446474_tn?1404424777
Blank
HectorSF
CA
1815939_tn?1377995399
Blank
pooh55811
96938_tn?1189803458
Blank
FlGuy
South, FL