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.
Sometimes I feel like the left side of my head is going to explode. My body temperature runs 2 to 4 degrees below normal and Im always cold. I have body aches and pain and I have constant fatigue. My feet and legs swell at night and it is hard to walk in the morning. My vision gets blurred on and off during the day.
Prior to tx I felt healthy. I would start my day by working out 1 1/2 to 2 hours and then go to work for 12 or more hours. I loved life. Now each day I wake up (or should I say get up,I also have insomnia) trying to figure what to do so I can feel better. What doctor do I call next? Who will listen?
I have requested my Liver Specialist to report this to Roche and the FDA many times. Yesterday he replied that he would gladly do this, do I have any contact numbers or information. Shouldnt they haven done this on one of my first 4 request? shouldnt they have direct access to this?
I know for some tx is a life saver. I know for me tx has taken life out of living.
This is worse than being on tx, at least on tx I had what I thought was an end date and something to look forward to.
Im going to keep posting how I feel so people considering tx will weigh all options.
Im SVR Would I do it again? NO- NO- NO.
Are their other out their with these post sides?
Prior to tx I felt healthy. I would start my day by working out 1 1/2 to 2 hours and then go to work for 12 or more hours. I loved life. Now each day I wake up (or should I say get up,I also have insomnia) trying to figure what to do so I can feel better. What doctor do I call next? Who will listen?
I have requested my Liver Specialist to report this to Roche and the FDA many times. Yesterday he replied that he would gladly do this, do I have any contact numbers or information. Shouldnt they haven done this on one of my first 4 request? shouldnt they have direct access to this?
I know for some tx is a life saver. I know for me tx has taken life out of living.
This is worse than being on tx, at least on tx I had what I thought was an end date and something to look forward to.
Im going to keep posting how I feel so people considering tx will weigh all options.
Im SVR Would I do it again? NO- NO- NO.
Are their other out their with these post sides?
For those of us who failed tx, we can only wait & watch as the virus silently does its destruction through out our whole bodies - brain, liver, pancreas, joints, thyroid....
My body temp has been below normal for years. The virus continues to rob the life I once had. I can only look fwd to being sick enough to get a transplant- ugh! hope I'm dead before that.
I was a gym bunny till tx. Haven't been back. Try to walk a couple miles per day. So much fatigue. BUT I had fatigue & muscle aches & bone issues before I was diagnosed.I read about sides & after tx effects, they didn't seem any different from I was experiencing from the hcv.
The only hope of stopping the virus is successful tx. Its a personal & serious decision. I'm just surprised that achieving svr, you wouldn't do it again.
I sincerely hope this recovery period gets better for you. some say it takes a year. Best wishes.
I'm not saying no body should do tx, just consider there could be serious long term effects and are you willing to risk that.
I do hope you find an answer to the your situation.
As far as my side effects during tx I had most all the side effects most have except I didn't loose any hair. At about week 15 they had to cut my dose due to retinal hemorrhaging. My vision has never been the same
Seven months post tx/ non responder here. I still have sides, very sore knees and wrists and bouts of extreme fatigue I never had before I tried tx.
I have kept a journal and if I go back a few months I realize I have made some progress in recovering from tx.
It is ever so slow I would not admit that if it were not for all my journal entries though.
Four months ago they were all awful terrible days and now they are for the most part complaints about feeling 10 years older in less than a year.
I hope I will feel even better in a few more months and my journal will help me realize if I have made any progress.
We all have a different journey and I am ever so envious on those that get through it all unscathed and have success!..but I tried and I give myself a big pat on the back for that.
How about Vitamin D level, arthritis panel...
Yes, I would think that a liver specialist would have contact information for the drug companies in order to report ongoing side effects. Makes one wonder how many of our side effects actually get reported to the drug companies.
I hope you turn the corner on this soon so that you can start feeling better.
I really hope you can find some kind of QUALITY of life SOON!
robin
Your death cert may say respiratory arrest, heart failure, or kidney - but you may not have had those progressions if you did not have hcv. Believe me, your quality of life will decline and the longer you have it, the faster it declines in the end.
If you do not get rid of the hcv, you will get sicker.
The only chance of avoiding it is to take the chance of tx. The tx is the only way to get rid of it unless your own body beats it off. And again i say, it is a serious consideration & a personal choice. It is a privilege to get the tx. Any one who gets svr has achieved the goal.
Lets stick it out together, maybe we'll all get there.
mcslo- you want someone to listen, to try to make sense of what is going on with this. peace in your mind, no regrets, just move forward. i am a big fan of therapy; huge. insurance covers it or they have it on sliding scale, if you can pay fine, if not, fine. if your mind is in sync with your body--which sounds negative at this point, its a lose lose. change your outlook and you will feel such a difference. talk to a minister, priest, rabbi, anyone you respect and you will find the way. big hugs to you. robin