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Posted 7/11/2010 2:19 AM (GMT 0)
I just had my 6 month appointment with the doctor ~ although I had no sign of the virus at 4 and 12 weeks, it seems my virus is back and at a level higher than when I was first diagnosed after 48 weeks of treatment.  What a blow.  What is next with treatment, I really wasn't listening to him just sat there in shock.  My viral load is now 7.9, my liver is stage 3 of 4 with fibrosis.  I have heard that the next step could be shots 3 times a week but for how long?? Anyone out there know where it goes from here??

 

Posted 7/11/2010 3:11 AM (GMT 0)
The first thing I'd do is get back to the doctor and explain that you were in shock and ask their recommendation(s) about what's next. How do you feel physically? If you're stage 3, and there's cirrhosis, it could be time to think about getting in a transplant program. I repeat, talk to your doctor first and see what they think.
Posted 7/11/2010 3:47 AM (GMT 0)

Hello, Aotay, and welcome to the forum!  I'm very sorry to hear that treatment didn't work for you.  I can imagine how disappointed you are.  However, the current combo only works for about 50-60% of cases and of those, half relapse.  I don't know if you were given these statistics prior to treatment or not.  I agree with David that you should get with your doctor again to make sure you understand just how sick you are.  As for viral load, I'm not sure what 7.9 means.  I was told my viral load last Dec. was 68,000.  It has always been told to me in those terms.

You also should be made aware that there is a new treatment on the horizon that is specifically better for genotypes 1a and 1b.  It should be available in the first half of 2011 and adds a 3rd drug, a protease inhibitor, to the ribavirin and interferon.  I am holding out for this treatment myself.  It clears the virus in 70% of those who receive this treatment and is only taken for 24 wks.  There is also now a form of genetic testing that can be done to see ahead of time who is likely to do well with treatment.  Ask your doctor about these possibilities for you, as well, and if you should be evaluated for a possible liver transplant.

Hugs,

Connie


Posted 7/11/2010 4:31 PM (GMT 0)
Good Morning Dave and Connie;

thank you so much for taking time out of your day to read and reply to me.  It is nice to know that I am not alone out here.

I am re-grouping and have a list of questions to ask my doctor.  I am at the "Fibrosis" stage - not yet to cirrosis.  I do remember the doc telling me that the treatment I did take would have been beneficial for my liver so that was his good news.

I choose to stay positive through this, my insurance runs out the end of July, I can get Cobra for 18 months so I should think about getting right back into  treatment.

How are you dealing with the side effects of the treatment as well as the post treatment? 

I am still fatigued and have taken 1/2 of a sleeping pill since the start of my initial treatment ( since I have insomnia), my joints ache, I try and walk a little more each day and stretch which seems to help.

I am back to night sweats, and a little more depressed even though I am still on my anti-anxiety pills. 

again thank you for taking thr time to talk.

Terry yeah

 

Posted 7/11/2010 4:58 PM (GMT 0)

Terry, it seems it would be best for you to get on Cobra and start treatment again.  I understand that you cannot wait until the new treatment becomes available.  There always seem to be delays with new treatments.

I was diagnosed with hep C in '93.  At that time, the only treatment available was interferon.  I tried taking it (by injection, 3 x a week) during two separate trials and was not able to continue past 6 wks., as my white blood cell count dropped so drastically that the doctor took me off treatment.  Therefore, I have not had further treatment.  However, my HCV progressed to cirrhosis and liver cancer, necessitating the removal of the rt. lobe of my liver.  I've been cancer-free for 3 yrs. now, but my best chance of preventing it from coming back is to treat the hep C.  So I'm waiting for the new treatment I mentioned earlier.  My hepatologist says I have a strain that is not terribly aggressive and also that they can give me meds if I again develop leukopenia (very low wbc's.)

Since I was on treatment for such a short time, I didn't develop any other side effects.  However, what you are experiencing is the norm for most.  And it takes a little time to feel well again after completing treatment.  However, some of what you are experiencing is from the HCV.

Please keep us updated!

Hugs,

Connie

Posted 7/11/2010 5:44 PM (GMT 0)
Hugs to you too Connie, again thank you.
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