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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.
I feel just the same, I'm going on to week 9 tomorrow, and I get so weak when I walk, and if I go out, the heat makes it even worse. I know I have to sit down when I start feeling shaky. I too am having difficulty falling asleep at night. I usually stay up watching TV until I feel sleepy, then go to bed, which can easily be around 1 or 2 AM. I feel my worst in the mornings, and at night I feel somewhat better, except for the day after the shot, when I feel terrible all day. My worst side effect so far is the weakness, I must have my hemoglobin way low, I'll find out tomorrow.
I don't know how you can work, I wouldn't be able to. I am also irritable at times, I really hope we are on the real med!
Take care, and be well.
Carmen
I don't know how you can work, I wouldn't be able to. I am also irritable at times, I really hope we are on the real med!
Take care, and be well.
Carmen
Hi
I am on week 5, day 29 of TMC 435 treatment. This time, I am very very tired. I was on the SOC treatment in 2009 but relapsed. I work all day and HAVE to lay down for at least an hour when I get home. I am also extremely irritable. I also need help sleeping at night. I just got my HCV level checked from the primary doc and should find out my level in a couple days. This should tell me whether I am on the "real deal" or the placebo. The exhaustion I feel tells me that I am. My WBC is in the toilet but my other counts are holding strong.
I am on week 5, day 29 of TMC 435 treatment. This time, I am very very tired. I was on the SOC treatment in 2009 but relapsed. I work all day and HAVE to lay down for at least an hour when I get home. I am also extremely irritable. I also need help sleeping at night. I just got my HCV level checked from the primary doc and should find out my level in a couple days. This should tell me whether I am on the "real deal" or the placebo. The exhaustion I feel tells me that I am. My WBC is in the toilet but my other counts are holding strong.
Hi,
Did you start your treatment? Haven't heard from you, how have you been?
Carmen
Did you start your treatment? Haven't heard from you, how have you been?
Carmen
Oh that would be wonderful, in that case then, it's a welcome symptom!
Thanks!
Thanks!
Maybe the nausea means you're getting the TMC435, because I think this is one of the main extra symptoms associated with it. Hope it continues to improve!
Hi Fred,
I really hope you are able to get in one of the treatments. My first treatment was horrible, it was 48 weeks of pure agony, but this time around it's more tolerable, my doctor said that apparently the body tends to accept it better a second time around. Thank God! I was expecting the flu-like symptoms with my very first shot but it never happened. The first 2 weeks were unbelievable, I thought I was not getting any symptoms at all, but beginning week 3 I started feeling dizzy and my energy level was way down, and still is, but nothing like the first time.
I am definitely hoping the TMC435 will do it for me, it is very promising by what I hear and I guess when you have such high expectations, the treatment is more tolerable. Please stay on the forum, there are so many knowledgeable people out there who will give you support during the treatment, it's amazing!
Good luck, and I hope you start soon and that your insurance covers the treatment.
Carmen.
So hopefully a second time for you will be different, the main goal is to get rid of this virus. I wish you well, let me know if
I really hope you are able to get in one of the treatments. My first treatment was horrible, it was 48 weeks of pure agony, but this time around it's more tolerable, my doctor said that apparently the body tends to accept it better a second time around. Thank God! I was expecting the flu-like symptoms with my very first shot but it never happened. The first 2 weeks were unbelievable, I thought I was not getting any symptoms at all, but beginning week 3 I started feeling dizzy and my energy level was way down, and still is, but nothing like the first time.
I am definitely hoping the TMC435 will do it for me, it is very promising by what I hear and I guess when you have such high expectations, the treatment is more tolerable. Please stay on the forum, there are so many knowledgeable people out there who will give you support during the treatment, it's amazing!
Good luck, and I hope you start soon and that your insurance covers the treatment.
Carmen.
So hopefully a second time for you will be different, the main goal is to get rid of this virus. I wish you well, let me know if
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
Hi Carmen,
PCR (polymerase chain reaction) is the test used to determine your viral load.
I had many of those lapses in memory during treatment where I would forget what I was talking about. My friend who was treating said it was good for us to talk to each other since neither of us minded we the other forgot the whole conversation we were in the middle of. :)
I would guess that you used pegintron interferon the first time and this time you are using pegasys. I had the very high fever (104 also) and bad flu like effect after the first injection like you but the subsequent injections weren't so bad. I hope yours improve.
By the way, I told a friend about this trial who lives in georgia and they were told the have put recruiting on hold but may reopen. Did you screen for the trial a while ago? Who is the doctor that is treating you?
Take care,
Dave
PCR (polymerase chain reaction) is the test used to determine your viral load.
I had many of those lapses in memory during treatment where I would forget what I was talking about. My friend who was treating said it was good for us to talk to each other since neither of us minded we the other forgot the whole conversation we were in the middle of. :)
I would guess that you used pegintron interferon the first time and this time you are using pegasys. I had the very high fever (104 also) and bad flu like effect after the first injection like you but the subsequent injections weren't so bad. I hope yours improve.
By the way, I told a friend about this trial who lives in georgia and they were told the have put recruiting on hold but may reopen. Did you screen for the trial a while ago? Who is the doctor that is treating you?
Take care,
Dave
My husband was only on the treatment for 24 weeks. The trial protocol for tx-naive was that if you were UND by week 4 and on the trial drug, and stayed that way, then you got to stop at 24 weeks. So when he got stopped we knew then that he had gotten the TMC435.
He finished the trial a year and a half ago, and I still feel SOOO grateful and lucky that it worked, and that he did as well as he did, and does not have lingering side effects. I was pretty darn scared when he started, and it was a tough six months for us, but ended up bringing us closer.
I will be looking for your posts and wishing you (and Cakes8267) all the best of luck. I believe TMC435 is great stuff and hopefully you're getting it and will clear!
He finished the trial a year and a half ago, and I still feel SOOO grateful and lucky that it worked, and that he did as well as he did, and does not have lingering side effects. I was pretty darn scared when he started, and it was a tough six months for us, but ended up bringing us closer.
I will be looking for your posts and wishing you (and Cakes8267) all the best of luck. I believe TMC435 is great stuff and hopefully you're getting it and will clear!
I am starting TMC 435 on Friday, I surely hope I get the real thing. I am also a relapser. I am going to have a primary doctor check my levels after one month and see how I am doing.
Hello!
With my first treatment, within 4 hours of getting my first shot I had a fever of 104, I thought I had the flu, little did I know it was one of the side effects. I was miserable 24/7, and like I said before, the day I felt a little better was the day I had to get the shot. This time I did not feel anything for the first 2 weeks, until day 14. I have no idea what caused it but I started feeling very dizzy, more like vertigo all morning. I was not supposed to have any food after midnight and the appointment was at 2 PM, so at first I thought it was a drop in blood sugar. As of today, almost a week later, I still feel the same, I feel exactly like I felt during my pregnancies when I had morning sickness, except it is constant. I am not feeling hungry and just the smell of food makes me nauseous. I am Puerto Rican and we cook with a lot of seasoning, so you can imagine!
I have been taking Paxil, which I was on during my first treatment. I have been very depressed just because of how I feel. I did become anemic the first time, and only God knows how I was able to finish.
I am sorry but what is pcr? I might know what it is, but I am not thinking straight. By the way, did you notice if the interferon affected your memory? I have forgotten a lot of things that happened in 2004, I cannot put a time-line on things as they happened. And this time around, I am already experiencing the same thing, I can be talking and all of a sudden I forget what I was going to say, (has nothing to do with my age....LOL)
Thank you Dave for your well wishes!
Carmen
With my first treatment, within 4 hours of getting my first shot I had a fever of 104, I thought I had the flu, little did I know it was one of the side effects. I was miserable 24/7, and like I said before, the day I felt a little better was the day I had to get the shot. This time I did not feel anything for the first 2 weeks, until day 14. I have no idea what caused it but I started feeling very dizzy, more like vertigo all morning. I was not supposed to have any food after midnight and the appointment was at 2 PM, so at first I thought it was a drop in blood sugar. As of today, almost a week later, I still feel the same, I feel exactly like I felt during my pregnancies when I had morning sickness, except it is constant. I am not feeling hungry and just the smell of food makes me nauseous. I am Puerto Rican and we cook with a lot of seasoning, so you can imagine!
I have been taking Paxil, which I was on during my first treatment. I have been very depressed just because of how I feel. I did become anemic the first time, and only God knows how I was able to finish.
I am sorry but what is pcr? I might know what it is, but I am not thinking straight. By the way, did you notice if the interferon affected your memory? I have forgotten a lot of things that happened in 2004, I cannot put a time-line on things as they happened. And this time around, I am already experiencing the same thing, I can be talking and all of a sudden I forget what I was going to say, (has nothing to do with my age....LOL)
Thank you Dave for your well wishes!
Carmen
How long ago did your husband finish the treatment? How long was he on it, 24 or 48 weeks? I am so glad he did great, that really gives me hope. I am having mild symptoms compared to the first time I had treatment, but it still taking a toll on me, so I am hoping this time around I am as lucky as your husband.
Thanks, I'll be on this site quite frequently during my treatment, posts like yours really give me hope, and give me the support I need to go through with it.
Carmen
Thanks, I'll be on this site quite frequently during my treatment, posts like yours really give me hope, and give me the support I need to go through with it.
Carmen
Hi Star,
It's Carmen, I forgot to write it on my first post!
I started on April 17th, and I am praying I am not on the placebo. I have done a lot better than with my first treatment, but my main issue is the lack of energy, I can't stand up for more than a minute, it feels like I am dragging myself, and going up the stairs is a marathon for me now.
With the study they say it's about a total of 6 weeks of studies and paperwork before they start the treatment. My doctor here in Atlanta is awesome!.
This disease is so "silent" you don't know you have it until you go to the doctor for something else! I never had symptoms, just with the treatment.
My kids are doing great, thanks, very concerned and worried for me. They are encouraging me to hang in there.
Will definitely love to stay in touch.
Carmen
It's Carmen, I forgot to write it on my first post!
I started on April 17th, and I am praying I am not on the placebo. I have done a lot better than with my first treatment, but my main issue is the lack of energy, I can't stand up for more than a minute, it feels like I am dragging myself, and going up the stairs is a marathon for me now.
With the study they say it's about a total of 6 weeks of studies and paperwork before they start the treatment. My doctor here in Atlanta is awesome!.
This disease is so "silent" you don't know you have it until you go to the doctor for something else! I never had symptoms, just with the treatment.
My kids are doing great, thanks, very concerned and worried for me. They are encouraging me to hang in there.
Will definitely love to stay in touch.
Carmen
Hi Cindy,
Who knows, maybe same doctor? I go to Emory too. Thanks, would love to chat.
Carmen
Who knows, maybe same doctor? I go to Emory too. Thanks, would love to chat.
Carmen
Hi, thanks for your comment. I also go to Emory, on the 16th floor. I haven't heard of Gilead, hope it works great for you. I was doing just great until my last visit a week ago, I felt so sick I thought I wasn't going to make it to the doctor's office, so I decided to "valet park" instead of parking the car myself. Next Tuesday will be day 28 and then I go every month, day 28 will be the fifth visit for the first month of treatment. I feel like a pincushion!
It was great that you felt so much better during your vacation, maybe because your mind was not focused on your symptoms.
It will really be nice to talk, I appreciate that.
Carmen
It was great that you felt so much better during your vacation, maybe because your mind was not focused on your symptoms.
It will really be nice to talk, I appreciate that.
Carmen
Good news on your biopsy results. Many people have had inconsistent results with biopsies although it is the best diagnostic tool approved in the US for determining if someone has mild to moderate fibrosis along with an exam by a qualified dr and all the pertinent labs.
If you remember your first tx well does it seem that the side effects are no worse now then then? WriteitDown's husband's experience and the trial data so far have not really shown any major sides that are different from interferon and rbi alone, but of course even with the currently approved tx the sides vary drastically from one person to the next. I hope yours remain somewhat manageable.
Did you speak with your doctor about taking an antidepressant? Good to hear you HGB is still okay, it sounds like if it does crash your doctor has the discretion to prescribe procrit. Did you become anemic the first time you treated or have any dose reductions?
When you treated the first time did you have a pcr done only at 6 months post, or did you also have one at 1 month and 3 months post also? Do you remember the sensitivity of the pcr's that were used when you treated the first time?
I had a lot of issues with my blood values while I treated and became severely anemic even while using procrit. I started with normal levels of neutrophils,white blood cells, hgb, red blood cells and platelets and they all fell to levels where I required medical intervention (helper drugs) to continue. The most common side effect of boceprevir is hemolytic anemia, neutropenia (reduction in absolute neutrophil count) is also more prevalent when compared to SOC alone.
It's great to see that more effective drugs with seemingly less sides like TMC 435 are already in phase three.
Be well and keep us posted about your treatment.
-Dave
If you remember your first tx well does it seem that the side effects are no worse now then then? WriteitDown's husband's experience and the trial data so far have not really shown any major sides that are different from interferon and rbi alone, but of course even with the currently approved tx the sides vary drastically from one person to the next. I hope yours remain somewhat manageable.
Did you speak with your doctor about taking an antidepressant? Good to hear you HGB is still okay, it sounds like if it does crash your doctor has the discretion to prescribe procrit. Did you become anemic the first time you treated or have any dose reductions?
When you treated the first time did you have a pcr done only at 6 months post, or did you also have one at 1 month and 3 months post also? Do you remember the sensitivity of the pcr's that were used when you treated the first time?
I had a lot of issues with my blood values while I treated and became severely anemic even while using procrit. I started with normal levels of neutrophils,white blood cells, hgb, red blood cells and platelets and they all fell to levels where I required medical intervention (helper drugs) to continue. The most common side effect of boceprevir is hemolytic anemia, neutropenia (reduction in absolute neutrophil count) is also more prevalent when compared to SOC alone.
It's great to see that more effective drugs with seemingly less sides like TMC 435 are already in phase three.
Be well and keep us posted about your treatment.
-Dave
Hi,
My husband was in the Phase II trial for TMC435 for treatment-naive. He was lucky, got the real deal, and is now SVR. I truly hope you get the TMC435 and that it works for you. My husband had an overall very good experience with it -- only mild-moderate side effects. He had obviously never done interferon and riba before, but he did not seem to have any symptoms that we wouldn't have expected with just the SOC.
I'm not around here too much anymore, but I'll try to keep a lookout for your posts, or message me if I can answer anything specific about the Phase II trial.
Best of luck!
My husband was in the Phase II trial for TMC435 for treatment-naive. He was lucky, got the real deal, and is now SVR. I truly hope you get the TMC435 and that it works for you. My husband had an overall very good experience with it -- only mild-moderate side effects. He had obviously never done interferon and riba before, but he did not seem to have any symptoms that we wouldn't have expected with just the SOC.
I'm not around here too much anymore, but I'll try to keep a lookout for your posts, or message me if I can answer anything specific about the Phase II trial.
Best of luck!
Hi--don't know your name
I just had my liver biopsy in South Miami for the TMC 435 phase III trial.. They tell me I will start treatment very soon. My team here at Miami Research Associates is great.
I had a blood transfusion in 1976. Funny thing isI too got diagnosed when I had moved into a place with carpet and had a bad asthma attach in Jan 2009. I had lived in Ontario Canada from 1996 thru 2005 and was hospitalized quite a few times but they never tested me. I worked in s hospital and even got the Hep B vaccine every year.
Would love to stag in touch with you through out this process.
Happy mothers day !!! Star
P S. How all r your kids????
I just had my liver biopsy in South Miami for the TMC 435 phase III trial.. They tell me I will start treatment very soon. My team here at Miami Research Associates is great.
I had a blood transfusion in 1976. Funny thing isI too got diagnosed when I had moved into a place with carpet and had a bad asthma attach in Jan 2009. I had lived in Ontario Canada from 1996 thru 2005 and was hospitalized quite a few times but they never tested me. I worked in s hospital and even got the Hep B vaccine every year.
Would love to stag in touch with you through out this process.
Happy mothers day !!! Star
P S. How all r your kids????
I am also in the Atl area and see a dr at Emory.Not tx yet but am here if you eant to chat-cindy
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