... my viral load is in the 2 millions and my husband is not far behind.We are now debating our options on the treatments. What are the side effects of the shots and is there any other drug that will work better or any with less side effects? will my suboxone help with the pain?
It's OK to stay on your suboxone while treating. Since you had the virus for only 7 years I doubt there is alot of damage to your liver already but get a biopsy or fibrosure or fibroscan to check you liver along with blood work. A biopsy is the best test but very evasive. Go to google and put in "interferon and ribaviran and side effects" and you should get alot of info. If I were you I would wait for the new drug telaprevar to come out in about a year. If will be added to the interferon and ribaviran but it increases the chances of a SVR (sustained viral response) which means it basically makes you virus free and some are saying the word cure. The SVR rate now depends on your genotype. If your a !A ir 1B your chances are about 50%. With the telaprevar added it increases the chances to about 80% and 1A and 1B is the hardest to cure. Also with the telaprevar you may cut down your treatment to only 6months instead of 48 weeks.
Do you belong to a Hepatitis C support group? If you can find a good one, that is where you will have many questions answered. Here in Colorado we have the Hepatitis C Connection. The group is a pipeline for research information, experiences members have had with different area doctors and with treatments. Through the group, I learned that many Hep C specialists were not in touch with important realities. I had debilitating symptoms, which could have been indicators of many numerous different diseases. The first few Hep C specialists where firm about the “fact” that Hep C does not have symptoms until the liver begins to croak with cirrhosis. Through the support group, other Hip C carriers shared problems they were having. Most of my symptoms were common to most untreated group members.
I was not considered “at-risk” for Hep C.
In 1997 I banked my own blood for surgery, and that is when I found out I had it. Through research, it was determined that I received the virus from blood transfusions in 1964. The only way to determine if the virus was threatening me was through biopsy. My Hepatitis flavor was 1a. My viral load was low and there was minimal liver damage. Back then, the prevailing Interferon protocol was guaranteed to be brutal and the success rate was less than 15%.
After I had been battling with my not hepatitis C symptoms, which began in 2003, I asked for a second biopsy. First, my private insurance company required that I have a viral load test. Since the load was higher, insurance approved the biopsy. The amount of liver damage had increased but was still less than my doctor’s threshold for initiating interferon therapy. I am a scientist. To me the rate of damage was accelerating but because the level of damage was still low, my doctor would not authorize treatment. I did more research and consulted with several new doctors. My viral load became lower than what it was when I was first tested; I was told by three specialists that the viral load is NOT an indicator of damage.
Through my support group, I learned that a few interferon patients have flu like side effects during the first month or two of treatment with less severe side effects afterwards. Most patients, after the “flu” stage begin to experience side effects I associate with cancer chemotherapy. In my case, my bone marrow production of red blood cells all but ceased. I was given transfusions from which I acquired another blood born infection. I was stubborn and finished my 48 weeks of interferon Ribavirin therapy. The Hep C virus cleared before the 12th week but because of the infection I received from transfusions, I was started on steroids to suppress my immune system at the 36th week. My body was destroying red blood cells at a rate equivalent to two units of blood in less than 72 hours. With the steroids, it was predicted that the virus would return soon after I ended the interferon Ribavirin protocol.
I was dying from the new blood disorder and having Hepatitis C was not as important as living. I will not go into what happened with the new blood disorder. The fact that I am alive now, 4 years later is because the hematologist trying to save me used “evidence based medicine.”
I still have hepatitis C. My viral load is 10x what it was before my interferon therapy but a subsequent biopsy shows that the level of liver damage is now lower than it was back at the time of my diagnosis. In addition, all of those disabling symptoms “not caused by Hepatitis C” have been completely gone for almost 4 years. My hematologist believes that hepatitis c virus affects more than just the liver. The 48+ weeks in hell allowed my body to do a lot of healing.
In summary, here is what I suggest.
1. No alcohol! I always loved wines. I now restrict myself to 12 oz per year.
2. No recreational drugs!
3. When a doctor writes a prescription start a discussion about the load the medication places on your liver, over the counter drugs must be regarded in the same way. For example, the non-drowsy antihistamines are out. I can use some of the ones that do make you drowsy.
4. Know your genotype
5. Join a support group
6. Get a biopsy, I have had three, two through my right side and an ultrasound guided triple, through my belly. My H1N1 shot was more painful than they were, but the ultrasound-guided biopsy was uncomfortable. The radiologist guided tour of my gall bladder and pancreas made up for the discomfort.
7. The toughest thing to do is to decide if you are willing to begin the interferon Ribavirin protocol. When I was deciding one of my doctors warned me that the cure could be worse than the disease. My experience was the worst nightmare that I ever had!
This will be a tough decision!
Good luck! Find a support group!
my viral load is 3 million I tried the two treatment over 5 yrs ago and it did not work after doing this for a year. But times have changed and now im tryin the 3 treatment so far no problems started 2/17/12 they have a incivek support line which really helps me along with prayer big time. I have told and convinced my self to trying this thing again Ive heard the out come is gr8. I am 61 yrs and want to live we feel good but that virus is still growning on the inside. I was a solider when i got it I have to fight now. You owe it to yourself.
I am a female.
I was diagnosed in 1989 and my liver function tests were high way before that, I am in my 60's, my life has been good and I didn't waste time by sitting back and not enjoying it. My body and mind has been put to the test and I am not NEAR ready to quit. Seven years is nothing. I don't think your viral load being in the millions is a big deal. It's the life style you are living now.
Do keep debating your treatment and don't take it on until you know for sure that is what you want and need. Do not take the treatment together. You need the other to make it, I did it alone and it wasn't easy. But, as far as the interferon and ribavirin I did well though I was sick. It's like having the flu every day. Sometime bad and sometimes not so bad. It's just the incivik that I think should NOT be legal.
ASK YOUR DOCTOR TO TELL YOU ABOUT STEVENS JOHNSON'S SYNDROME BEFORE YOU START TELAPRIVIR OR BOSEPREVIR. I would be real curious to know if there is a doctor out there that would be honest about it.
Get a second opinion, I went to the Mayo Clinic. It took a couple of years to pay my bill but it mattered. Like another person said, get your liver biopsy. Research it, hours if you can. Your liver is one organ in the body that reproduces cells!! Yes. Vitamin C helps generate new cells and boost your immune system. I swear by Milk Thistle and the Mayo clinic recommends it as well, they have a web site.
Genotype 1a is the hardest Hep C to treat and takes the longest treatment.
Do not panic, though Hep C can be fatal, any treatment you take you want to do with an open mind, ready for side effects, safety nets in place, and educate yourself on the illness and treatment. I think the positive attitude you have towards it helps success rate.
If you drink, don't consider it because you don't really want to live. Spend your money for a vacation instead. Hep C and alcohol or drugs is slow suicide. I would compare it to drinking a smoothie laced with lead on a daily basis
Ask questions, seek second opinions, research and don't make yourself sicker with worry.
You are both going to be fine and regenerate those cells. You know you can live with 1/3 of your liver?
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