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TMC 435 study
Hi,
I would like to be able to communicate with people who are, or were on the TMC435 study, or on any other Hep C treatment. I just started on the 3rd phase of the study 3 weeks ago.
I received a blood transfusion back in 1978, 2 weeks after the birth of my youngest son. I was diagnosed with Hep C back on February of 1992 when I donated blood. As you too know, not much was known about Hep C yet. I received a letter from the blood bank saying that they had discarded the blood because of the Hep C and recommended I see my doctor. The doctor at the time told me it was "dormant" and that I had nothing to worry about.
On October of 2003, shortly after I moved to Ohio from Texas, the change in temperature made me sick and I developed bronchitis. I saw a doctor there for the first time, and she was truly a blessing.... she asked me if "I had had a blood transfusion on or before 1992." I told her I did and that I knew I had Hep C but no other doctor had done anything about it. She ordered blood work and after the results came positive for Hep C, she recommended a specialist. I started the interferon/ribavibrin treatment on February of 2004 and it was just horrible, the flu-like symptoms, and the headaches were unbearable and they lasted until the meds finally got out of my system. The day I felt a "little" better was the day I had to have the shot.
When I finished the treatment the level of Hep C virus was below detectable, I was so happy that it was all over, but even happier that the virus was not showing on the blood work results......until 6 months later when it came back with even higher levels of the virus.
Seven have gone by and now I am in Atlanta, a new doctor, and a new treatment. So far the meds make me slightly dizzy at times, and my main issue is dealing with the lack of energy, and depression, I try doing chores around the house, and I feel like I am going to pass out.
I am very happy with my new doctor, and that that the results are very promising, but like many Hep C patients the worse is not having someone to talk to about the same issues that are affecting us. At times our family members do not understand what we go through, and deal with on a day to day basis. I am going through this a second time only because I want to be healthy again, but as you know, it's not easy.
If anyone on TMC 435 or any other study or treatment for Hep C wants to have someone to communicate with, I am here going through the same thing you are going through, and just like you, I too need someone who understands.
I would like to be able to communicate with people who are, or were on the TMC435 study, or on any other Hep C treatment. I just started on the 3rd phase of the study 3 weeks ago.
I received a blood transfusion back in 1978, 2 weeks after the birth of my youngest son. I was diagnosed with Hep C back on February of 1992 when I donated blood. As you too know, not much was known about Hep C yet. I received a letter from the blood bank saying that they had discarded the blood because of the Hep C and recommended I see my doctor. The doctor at the time told me it was "dormant" and that I had nothing to worry about.
On October of 2003, shortly after I moved to Ohio from Texas, the change in temperature made me sick and I developed bronchitis. I saw a doctor there for the first time, and she was truly a blessing.... she asked me if "I had had a blood transfusion on or before 1992." I told her I did and that I knew I had Hep C but no other doctor had done anything about it. She ordered blood work and after the results came positive for Hep C, she recommended a specialist. I started the interferon/ribavibrin treatment on February of 2004 and it was just horrible, the flu-like symptoms, and the headaches were unbearable and they lasted until the meds finally got out of my system. The day I felt a "little" better was the day I had to have the shot.
When I finished the treatment the level of Hep C virus was below detectable, I was so happy that it was all over, but even happier that the virus was not showing on the blood work results......until 6 months later when it came back with even higher levels of the virus.
Seven have gone by and now I am in Atlanta, a new doctor, and a new treatment. So far the meds make me slightly dizzy at times, and my main issue is dealing with the lack of energy, and depression, I try doing chores around the house, and I feel like I am going to pass out.
I am very happy with my new doctor, and that that the results are very promising, but like many Hep C patients the worse is not having someone to talk to about the same issues that are affecting us. At times our family members do not understand what we go through, and deal with on a day to day basis. I am going through this a second time only because I want to be healthy again, but as you know, it's not easy.
If anyone on TMC 435 or any other study or treatment for Hep C wants to have someone to communicate with, I am here going through the same thing you are going through, and just like you, I too need someone who understands.
It's getting a little better, and I am able to eat more, but I still have problems eating food that are strong in smell. I also eat some bland food, and ice cream doesn't bother at all, just what we need for the extra calories, right?
I am still very low in energy though, which is what bothers me the most. I can't go anywhere without feeling like if I had an asthma attack, or ran a marathon!
Thanks for your good wishes!
Carmen
I am still very low in energy though, which is what bothers me the most. I can't go anywhere without feeling like if I had an asthma attack, or ran a marathon!
Thanks for your good wishes!
Carmen
Hi Carmen,
I am also a relapser and I am trying to get on a trial or on the Telaprivir/Pegasys treatment. I have taken all the preliminary tests and have a PCR or 11million. I don't know if my insurance will cover the treatment so I am trying to get on the Gilead trial at the same time. I am hoping to get started with one of them in the next month or so. I treated about 5 years ago and it was pretty tough on me so I'm not looking forward to doing it again. Who knows maybe the addition of a new drug will be what clears it for me - Best of luck with your treatment - I'll be looking for your posts.. Be well...Fred
I am also a relapser and I am trying to get on a trial or on the Telaprivir/Pegasys treatment. I have taken all the preliminary tests and have a PCR or 11million. I don't know if my insurance will cover the treatment so I am trying to get on the Gilead trial at the same time. I am hoping to get started with one of them in the next month or so. I treated about 5 years ago and it was pretty tough on me so I'm not looking forward to doing it again. Who knows maybe the addition of a new drug will be what clears it for me - Best of luck with your treatment - I'll be looking for your posts.. Be well...Fred
Sorry it took me a while to see this & respond. You know what, he did have some nausea early on in tx and had some trouble eating, but it went away -- maybe around week 5 or so? However, his tastes in food changed somewhat while he was treating. He liked much plainer foods and certain things he normally liked seemed unappealing to him.
I'm sorry you're having trouble eating -- I hope it passes. All I can advise is just try to figure out anything that seems appealing and eat that. Ice cream seemed always to appeal to my husband while he was treating.
Good luck & hope you will clear!!!
I'm sorry you're having trouble eating -- I hope it passes. All I can advise is just try to figure out anything that seems appealing and eat that. Ice cream seemed always to appeal to my husband while he was treating.
Good luck & hope you will clear!!!
So wonderful to hear such great news about TMC435. I know you and your husband must be feeling so grateful. Was your husband able to eat everything, or did he find that some things made him sick? That is what I am dealing with, I feel very weak because I am not eating right, I just can't stand the smell of food.
I am so happy for both of you, it really gives me hope that if I am on the real med, I too have the possibility of getting rid of the hep C finally.
Good luck to both.
Carmen
I am so happy for both of you, it really gives me hope that if I am on the real med, I too have the possibility of getting rid of the hep C finally.
Good luck to both.
Carmen
Hi!
I sure hope you do, I am in the same situation, don't know what I am getting, but all we can do is pray specially after what we went through the first time. Where are you from?
Why would a primary doctor be the one to check your levels? I have already had 4 visits on the first month, Tuesday will be day 28 and visit #5. I have had blood work done on all of them, so I don't know if I am understanding right, but you are only having your levels checked after one month, is that the only visit besides tomorrow, for your first month?
Good luck! Carmen
I sure hope you do, I am in the same situation, don't know what I am getting, but all we can do is pray specially after what we went through the first time. Where are you from?
Why would a primary doctor be the one to check your levels? I have already had 4 visits on the first month, Tuesday will be day 28 and visit #5. I have had blood work done on all of them, so I don't know if I am understanding right, but you are only having your levels checked after one month, is that the only visit besides tomorrow, for your first month?
Good luck! Carmen
Hi Dave,
After I wrote to you I did remember what the PCR is. I had one done prior to the treatment, during, at the end of week 48, and 6 months after that. About the sensitivity, I am not sure.
Yes I used pegintron the first time and pegasys now.
I started the screening towards the end of January and by the time I had the liver biopsy done there was only two weeks left before the window closed for phase 3. I am seeing Dr Gitlin at Emory.
Take care too, Carmen
After I wrote to you I did remember what the PCR is. I had one done prior to the treatment, during, at the end of week 48, and 6 months after that. About the sensitivity, I am not sure.
Yes I used pegintron the first time and pegasys now.
I started the screening towards the end of January and by the time I had the liver biopsy done there was only two weeks left before the window closed for phase 3. I am seeing Dr Gitlin at Emory.
Take care too, Carmen
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