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.
I am now 8 months post treatment and no virus detected. If I knew then what I know now I WOULD NOT DO IT.
I'm going to keep coming back to post here to warn people who are thinking about treatment. Read everything you can before making the commitment to do interferon/ribaviran treatment. Is the virus so bad that you are willing to give up life as you know it? For many it is, for me it wasn't but I did tx anyway.
I had most all the sides people have plus some. I even had to have interferon dose reduced due to retinal hemorrhaging. If the hemorrhaging was any closer to the optic nerve I would of lost site in that eye. I still have vision problems.
But that was for a limited time and that part is over.
Now I have other issues that I have to live through that no one answers for.
Muscle aches and pains
Head aches
Constant fatigue and frequent exhaustion
Trouble sleeping
Upon awakening feet are swollen and ache. Painfully to walk
Compromised vision that comes and goes
Foggy thinking and difficulty concentrating
Body temperature always 2 to 4 below normal
Tingling throughout body
Moodiness
They are now saying I might have them for life. I don't remember them warning me of that prior to tx, But then again I have other memory losses. Maybe they warned me and I forgot. Since txI have been to see a GP , 3 endocrinologist, a neurologist and a naturalpathic dr. Next week I'm going back to the liver clinic.
Prior to tx I only needed about 5 hours of sleep. I would spend the first 2 hours of almost every day working out in some form. Then work 10 to 12 hours and loving life. Now it's a struggle to get up to go to work after 10 to 12 hours of restless sleep.Then I am in constant pain and live on the verge of exhaustion.
I had read other people's posts that wrote things like this but thought they had some sort of ax to grind and it wouldn't happen to me.
Well it is happening to me!
I want my life back !!!
I'm going to keep coming back to post here to warn people who are thinking about treatment. Read everything you can before making the commitment to do interferon/ribaviran treatment. Is the virus so bad that you are willing to give up life as you know it? For many it is, for me it wasn't but I did tx anyway.
I had most all the sides people have plus some. I even had to have interferon dose reduced due to retinal hemorrhaging. If the hemorrhaging was any closer to the optic nerve I would of lost site in that eye. I still have vision problems.
But that was for a limited time and that part is over.
Now I have other issues that I have to live through that no one answers for.
Muscle aches and pains
Head aches
Constant fatigue and frequent exhaustion
Trouble sleeping
Upon awakening feet are swollen and ache. Painfully to walk
Compromised vision that comes and goes
Foggy thinking and difficulty concentrating
Body temperature always 2 to 4 below normal
Tingling throughout body
Moodiness
They are now saying I might have them for life. I don't remember them warning me of that prior to tx, But then again I have other memory losses. Maybe they warned me and I forgot. Since txI have been to see a GP , 3 endocrinologist, a neurologist and a naturalpathic dr. Next week I'm going back to the liver clinic.
Prior to tx I only needed about 5 hours of sleep. I would spend the first 2 hours of almost every day working out in some form. Then work 10 to 12 hours and loving life. Now it's a struggle to get up to go to work after 10 to 12 hours of restless sleep.Then I am in constant pain and live on the verge of exhaustion.
I had read other people's posts that wrote things like this but thought they had some sort of ax to grind and it wouldn't happen to me.
Well it is happening to me!
I want my life back !!!
and trying to right my feeling down about
the long term SX of TX
there is so much good that came from TX
and so much bad.
The thing is, I can't change it. It is what it is.
Before TX I had 2 jobs One full time and One part time.
Now I have one job and the income of that job is
1/2 that of what my old full time job was. Is this because of TX?
yes and no. Is it because of HCV? yes. Is it because of the
economy? yes
I knew TX could be hell and it was.
Did I know of the risk before TX? yes
That is why I didn't tell the GI that I had RA as a teenager
and was the reason I didn't tell the doctor about the family
history of mental illness. I was afraid they would not let me
do TX.
My GI did tell me that I would more than likely die with Hep C
not of it. But I didn't care I didn't want the disease or the stigma
of it.
Now for the good there is no active HCV in me.
while on TX the doctors found a spot in my left lung
that could be cancer or it could be scar tissue. After TX
it was gone. If it was scar tissue it would still be there.
Interferon was used to treat cancer in the 70s and still
is for some types. As for Ribavirin read this
http://www.emaxhealth.com/1020/51/31159/antiviral-drug-ribavirin-treats-30-percent-cancer-types.html
and at a year and a half post treatment my energy is still not back up to normal.
but would i do it again? yes, i think i would because you can't live without your liver. i'm managing the deal with the aches and pains and my glasses are stronger now. AND, i'm hoping in another year maybe i'll have all my energy back?
lots of hugs for all of us!!!!! a big GROUP HUG!
I also like that Quasar can turn a serious topic of side effects into a Big Group Hug !
sure hope you're able to get your energy back in a year or two cause if you have energy you can deal with the rest of the stuff.
i'm walking at least a half hour every day AND i do yoga a couple times a week. just doing these two things really help a lot.
i can't sleep either so i take melotonin some nights and other nights take a sleeping pill. we have to sleep and if i don't take something i'm up all night long!!!!!!
what a terrible experience you have had, it sounds awful. may i ask which literature you read before treatment?
My GP has been monitoring my liver health for the last 20 years (I have been HCV for >40) and he has never done any arm twisting for me to seek out tx. He has been realistic and honest about the lack of effectiveness, the impact of tx on health, the serious side effects and the expense. He is still less than enthusiastic about it all.
It was only when my normally stable enzymes shot up that he brought tx up again as an option.
His referral to the HCV Dr. was only an option that I had to decide upon.
Now the HCV Dr. is one of the two best in Toronto and he completely played down the risks of tx. While he painted no rosy picture of success, he also told me to relax, give it a try and if I couldn't tolerate tx that I could just quit.
There was no mention of the long recovery from only a few weeks of riba/peg. That I feel he was remiss in preparing me to make an informed decision.
Not everyone just stops and recovers right away.
Hey I take responsibility for all this. It was my decision to tx BUT I am also a health care professional and I know the importance of giving my patients a complete picture of risks and benefits so that they can make an informed decision.
The facts are that this has been such a poor, risky, shitty tx option, well a true picture would scare most folks off.
NOW let's hope the addition of the new protease inhibs. makes it a better gamble. It looks very promising :)
My doctor did warn me tx can make conditions come out due to tx, I just didn't know how bad it would be. I have all those symptoms as well, don't believe I'll ever be myself again.
I can no longer work because of tx & have signed for SSDI. Soc security does consider all the symptoms you get from hep c and the problems it causes. My freedom disability people asked all the right questions about symptoms about the virus and how it affects my day to day living. So they do know what questions to ask about the disease.( I am going in cirrhosis now)
I have also contracted another disease from doing treatment called sarcoidosis and there is no cure for it. An anitinflmatory disease that attacks the body any where it wants and usually more than one organ at a time. It attacks the liver, lungs, skin and eyes the most. If I would have known about all this I may have thought twice, not only did I not reach SVR but got a liver damaging new disease.
Now it's a matter of coping and learning how to make myself comfortable. I pray every day for all of us dealing with this & those going through tx reach SVR.