Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Treatment/ Death
Is Hep C going to kill you before there is a better treatment? That is the question you should be asking yourself before you decide. There is serious risk with your decision. For those who cant wait you have no choice but to do treatment. But remember most people die with Hep C not from Hep C.
Most of you here have already made this decision and it will probably me a good a decision for you. If your already doing tx think positive and move forward. If your not doing tx take a long hard look at TX and the consequences. For those that havent made that decision please consider the serious risk. It goes way beyond the feeling shitty during treatment.
I had my biopsy prior to tx and I had minor scaring and inflammation. My decision was made because my Dr thought it was a good idea and I thought I should do it now before I get much older, For ME that was a terrible mistake.
Prior to tx I had Hep C for 30+ years but I felt great. 2 weeks before TX I climbed Mt Whitney in a day, a month before that I did a triathlon in one of my record times, a couple of months before that I swam Alcatraz to SF. It isnt that I was out of the ordinary but I lived and loved to do physical activity. Today that is all gone.
Today I am SVR but wish I had never heard of TX. I wake up in the morning and go to bed at night and spend all the time between feeling terrible and wishing I had never made that decision. I am trying all sorts of drugs and therapies but so far nothing has helped.
I went to a 3 hour seminar put on by Pegasys prior to tx. We took notes and asked every question we could think of. NEVER was there any discussion on life long after effects.
I am now in a quest to do anything and everything I can do to feel better. I have seen Rheumatologists, endocrinologist a phycatrists, homeopathic and acupuncturist and even a spiritual healer. So far I dont feel any better and my eye sight is deteriorating. I will spend everything I have to help find some relief
The drug company says they have never heard of this type of reaction. I call BULL Crap.
The Hep C Drs are not helping, the drug company is in denial, the insurance doesnt want to pay and I feel like hell- but I am SVR. I think if I had read this prior to tx I would be thinking it could never happen to me, IT DID! If you think I am making this up go off DS and do internet searches on post interferon side effects and read up on thousands of others like myself. Its real- its ugly.
Is Hep C going to kill you before there is a better treatment? That is the question you should be asking yourself before you decide. There is serious risk with your decision. For those who cant wait you have no choice but to do treatment. But remember most people die with Hep C not from Hep C.
Most of you here have already made this decision and it will probably me a good a decision for you. If your already doing tx think positive and move forward. If your not doing tx take a long hard look at TX and the consequences. For those that havent made that decision please consider the serious risk. It goes way beyond the feeling shitty during treatment.
I had my biopsy prior to tx and I had minor scaring and inflammation. My decision was made because my Dr thought it was a good idea and I thought I should do it now before I get much older, For ME that was a terrible mistake.
Prior to tx I had Hep C for 30+ years but I felt great. 2 weeks before TX I climbed Mt Whitney in a day, a month before that I did a triathlon in one of my record times, a couple of months before that I swam Alcatraz to SF. It isnt that I was out of the ordinary but I lived and loved to do physical activity. Today that is all gone.
Today I am SVR but wish I had never heard of TX. I wake up in the morning and go to bed at night and spend all the time between feeling terrible and wishing I had never made that decision. I am trying all sorts of drugs and therapies but so far nothing has helped.
I went to a 3 hour seminar put on by Pegasys prior to tx. We took notes and asked every question we could think of. NEVER was there any discussion on life long after effects.
I am now in a quest to do anything and everything I can do to feel better. I have seen Rheumatologists, endocrinologist a phycatrists, homeopathic and acupuncturist and even a spiritual healer. So far I dont feel any better and my eye sight is deteriorating. I will spend everything I have to help find some relief
The drug company says they have never heard of this type of reaction. I call BULL Crap.
The Hep C Drs are not helping, the drug company is in denial, the insurance doesnt want to pay and I feel like hell- but I am SVR. I think if I had read this prior to tx I would be thinking it could never happen to me, IT DID! If you think I am making this up go off DS and do internet searches on post interferon side effects and read up on thousands of others like myself. Its real- its ugly.
Barb99999- I can see your point of ventured/gain since you didn't have any loss. I ventured and gained ,and I am SVR . Would I do it again NO.
For many there is no other choice but to do TX.For those do it and hope for the best. But if you can wait than WAIT. There are so many promising drugs out there. Maybe they are 10 years out but I had my hep over 30 years before treatment.
Honey I am sorry that you lost so much...it saddens my heart...I hope that you find wellness agin...that you can enjoy all that you did before....(((((((((((((((Big Hugs)))))))))))))
Also--I truly believe the drug companies knew that $ is to be made if people opt for treatment instead of not because of the terrible sides. Yes, I am a conspiracy theorists. But really, Chemo for this long.. .. in this case most correct I believe.
So sorry you are suffering from this but so thankful for your story. Truly the newbies to this disease are reading, learning and watching. I hope things get better for you soon.
When I had to reduce my dose in due to sides I asked the doctor and Roche if I can just use each week and spend less. That would have cut my bill $1500 a month. They all agreed it wouldnt be safe. I used and through away. Well now that Im using a hypo everyday for another drug it is no problem me regulating the dose . They give me a hundred hypodermics and I small vile and say have at it.
About 1 years ago a woman joined DS and wrote about a drug trial she was doing with Bristol Myer. She did a drug every other day for ONE WEEK. At the end of the week she was SVR with no sides. Maybe it was fake ( I dont think so) maybe she died of the drug, I dont know that either. She never came back to DS that I know of. Wouldnt that be nice if it worked!!! Just think what they would charge for that.
On a positive note I have found a doctor who is listening, my first appointment he spent over 2 hours with me and did 30+ blood test. If I find info I will post.
If others have found relief I would appreciate an email.