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Side effects of Pegasys, and Copegus.
I am now on my 45th day of treatment and all those nasty little side effects have seemed to come my way, body aches and joint pains, confusion. nothing that I hadn't read about, and yet now it is different being in the mix. I found out last week, that although my viral load has dropped from 574,000 to 130 and of course that not being the targeted 0. My treatment has been extended from 24 to 48 weeks. So I am in for the long road, no problem, But I would like to get involved with a support group of people who have gone before or are now on this same path to share insights, strengths and hope. It is hard for others who aren't or have or haven't been on this journey to have much valuable information, just saying! Its a tough place to be and to be sure it would be easy to offend loved ones who mean well but have no concept of what this treatment does to a person. Truly
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glad to hear that your ability to focus has improved!
I don't think anyone would disagree with you about the amazing support one can find on MH! If I had only found MH before starting treatment... who knows what my life would have been! Since my disability on curing and finding MH - my docs think I am a genus on the topic on HepC but I always tell them it is due to MH...
Best of luck to you and your fight!
f
I don't think anyone would disagree with you about the amazing support one can find on MH! If I had only found MH before starting treatment... who knows what my life would have been! Since my disability on curing and finding MH - my docs think I am a genus on the topic on HepC but I always tell them it is due to MH...
Best of luck to you and your fight!
f
Unbelievable, after rereading this post and responses I am taking aback by how much my ability to focus has changed. But more important to me is the support I have been given since the I first found MH.
"runsincircles", I think that's a perfect analogy, it would seem this is pretty much how everybody that I have encountered feels if not sometimes then most of the time during this treatment.
I would like to recommend a book to you if I may, it was written by Christopher Kennedy Lawford, its title is healing hepatitis C, he went through this tx 10 years ago. After reading it I have been able experience the daily mess a little easier, with the knowledge that I have made a choice to get well no matter what, and if ever I start considering, discontinuation, I call my grand kids and remember why I choose to get well.
It would sound as if your husband wants you well and doesn't understand how wicked these drugs can be, no matter what our appearance may look like it reeks havoc with many of us., it would seem more than not.
Your almost done, more than half way.
I have found too, if I "forget" to drink a gallon of water a day I feel so much worse.
Nobody seems to have all the answers...but together we can all get through this, I just did my 8th injection, knowing I wont begin to feel anything like normal again until next Friday, and then it will be time to do it again...
I would like to recommend a book to you if I may, it was written by Christopher Kennedy Lawford, its title is healing hepatitis C, he went through this tx 10 years ago. After reading it I have been able experience the daily mess a little easier, with the knowledge that I have made a choice to get well no matter what, and if ever I start considering, discontinuation, I call my grand kids and remember why I choose to get well.
It would sound as if your husband wants you well and doesn't understand how wicked these drugs can be, no matter what our appearance may look like it reeks havoc with many of us., it would seem more than not.
Your almost done, more than half way.
I have found too, if I "forget" to drink a gallon of water a day I feel so much worse.
Nobody seems to have all the answers...but together we can all get through this, I just did my 8th injection, knowing I wont begin to feel anything like normal again until next Friday, and then it will be time to do it again...
I also have the tremors, usually about mid morning. My other bad sx are pain/weakness in my legs/hips and severe back pain.My hepC doc seems to be over worked and uninterested. Since I had a seizure at the beginning, I forgot everything I had learned about this tx. My husband reminded me 2 days ago that I'm supposed to deal with the hepC nurse, not the dr. I'm in week 13/24 and am feeling completely lost and overwhelmed. My husband was helping up until the week before xmas and just quit. Now he doesn't understand why I can't keep up with anything. He told me to let him know how I was doing from day to day during tx and that he would do whatever he needed to help get me better. All of a sudden that attitude has changed. He's irritated by the fact I'm not getting things done, and tired of hearing about how I feel. I thought I was so lucky to have such an understanding husband. Now I feel like he's just "over it" and doesn't see how hard it is for me. He just thinks I'm not trying.
Essentially, I have the same consideration. That is, was the test done to early and if so can I return to the 24 week protocol. I am scheduled for my next VL test next week, that being the middle of week 8.
I did that little bit of math, trying to understand what and how to evaluate what is meant by "log reduction". I didn't even realize the obvious, as you pointed out, 3.56 log reduction.
If I recall if there is not a log reduction of 3 by week 12 the treatment would be terminated.
I did that little bit of math, trying to understand what and how to evaluate what is meant by "log reduction". I didn't even realize the obvious, as you pointed out, 3.56 log reduction.
If I recall if there is not a log reduction of 3 by week 12 the treatment would be terminated.
My understanding is that the test should be run at the end of week 4, just before the 5th injection (at the end of day 28 of tx)
I wonder if your doctor did not run the test too early
I am not sure why you divide 514,000 to 130. This does not have anything to do with the way the VL reduction is assessed
You had a 3.56 log reduction so this is pretty good
I wonder if your doctor did not run the test too early
I am not sure why you divide 514,000 to 130. This does not have anything to do with the way the VL reduction is assessed
You had a 3.56 log reduction so this is pretty good
First and foremost, all the responses have been great, thank all of you! How in the world or why there is a best answer button seems to me a way to create bad feelings in those who are trying to help and not compete with one another. And of course, the fact that I inadvertently hit it pisses me off. That to being just another side effect, RPITA, don't know if this is an acceptable acronym, but it a best fit for my personality right now,(Royal Pain In The ***). LOL
I am still trying to wrap my head around and understand the difference between quantitative and log values. The comparative ranges don't equate in my mind, please explain if you can. On 8/22/2012 my quantitative load was 514,000 or log 5.71. I began treatment 11/30/2012, having CBC's done every week for the first three weeks,then on the forth week before my forth injection we ran another CBC with a Heptimax. As far as my CBC's Dr. had mentioned how my RBC and Platelet counts were doing better than he would have liked, in fact he was looking for a greater evidence of treatment, reduction if you will. That being another subject of research latter...
Okay back to my current question, I went from 514,000 (5.71) to 130 (2.114).
When I divide 514,000 by 130 it equals 3953.8 or 1/3953, miniscule, and yet the log level has dropped almost 2/3. Call me crazy, but I don't see the correlation in the comparison.
I guess being involved with Aerospace most my working life, in the capacity of a Q.E. at times makes me a bit anal, but I don't like things of importance not to add up.
I am still trying to wrap my head around and understand the difference between quantitative and log values. The comparative ranges don't equate in my mind, please explain if you can. On 8/22/2012 my quantitative load was 514,000 or log 5.71. I began treatment 11/30/2012, having CBC's done every week for the first three weeks,then on the forth week before my forth injection we ran another CBC with a Heptimax. As far as my CBC's Dr. had mentioned how my RBC and Platelet counts were doing better than he would have liked, in fact he was looking for a greater evidence of treatment, reduction if you will. That being another subject of research latter...
Okay back to my current question, I went from 514,000 (5.71) to 130 (2.114).
When I divide 514,000 by 130 it equals 3953.8 or 1/3953, miniscule, and yet the log level has dropped almost 2/3. Call me crazy, but I don't see the correlation in the comparison.
I guess being involved with Aerospace most my working life, in the capacity of a Q.E. at times makes me a bit anal, but I don't like things of importance not to add up.
" But the worst of the worse for me is I have developed over that last couple of weeks some serious tremors, mostly during times of stress or psychical output. Crazy bad sometimes, My hep C Dr. just says, "he has never seen it before, and we will keep and eye on it"?"
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Tremors are not rare during treatment. Several of us had tremors during treatment. I remember posts about them. I had tremors during treatment, mostly in my hands and fingers. I chalked it up to the interference with neuro-transmission that the Interferon causes. I had forgotten about them until you mentioned them. Obviously they disappeared after treatment ended, just like the other side effects.
I am not surprised the doctor never heard of tremors being caused by the Hep C meds. There are many side effects from the meds of which the doctors are unaware.
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Tremors are not rare during treatment. Several of us had tremors during treatment. I remember posts about them. I had tremors during treatment, mostly in my hands and fingers. I chalked it up to the interference with neuro-transmission that the Interferon causes. I had forgotten about them until you mentioned them. Obviously they disappeared after treatment ended, just like the other side effects.
I am not surprised the doctor never heard of tremors being caused by the Hep C meds. There are many side effects from the meds of which the doctors are unaware.
I agree attitude is key and yet I would be lying if I were to say everything is going like a walk in the park,it seem every morning and every night I find myself contemplating my reasons for going through this hell. In fact I send my daughter-in-law and e-mail and expressed that to her, her response was to send me pictures of my grand kids, and she told me that with out me they would never have been possible and I need to, when considering why, think about what would happen had I not decided to attempt to get well. I first found out I had the virus in 2003, at that time I was told I could live 40 years with the virus, heck that would put it at 83, old enough...in March they would only say maybe until 55, OK not much of an argument there.
To begin with my Genotype is 3a, from what I understand it is one of the easier to treat, to me that sounds absurd. Although I would not say did not know what to expect going in. After reading the box inserts stating that most side effects were rare I was a little taken a back, not so much by the aches and pains but my brain fog is a problem not to good at being out of the loop. But the worst of the worse for me is I have developed over that last couple of weeks some serious tremors, mostly during times of stress or psychical output. Crazy bad sometimes, My hep C Dr. just says, "he has never seen it before, and we will keep and eye on it"? Funny you mentioned your cat, me and my roommate adopted a 4 week old blue point Siamese kitten 11/6/2012, Myra, just 3 weeks before my first injection, she truly has proven to be a blessing totally aware of the good times and the bad and unconditional affection, funny thing about that never really been a cat person but she has changed that though process, besides don't think I am up to caring for a bull mastiff right now.
Thank you for your response, besides my specialist,who had very little input about starting SSDI. My primary care Dr. began the paperwork last Friday, although I found out today I need to go to office in person. one thing I have done is created a journal that covers pretty much whats been going on, and what ever I don't recall, my roommate too has been taking notes.
I'm on week 17 of Peg/Copeg which translates to...119 days of treatment. I started having the same side effects as you at week 6 (45 days). You talked about confusion....lol....I couldn't even remember my own sons name for a moment...he had to remind me which was extremely embarrassing. It seems like you have a positive attitude about having to do the 48 instead of 24. I think that's key for treatment...ones attitude. Its like what one of the above posters said about chalking it up as a "lost year" and just accepting it. I personally am just using this time to educate myself however my retention level is at an all time low, I still try none the less. I got the joint pain, fatigue, and Psoriasis to go with the memory issues. I think you hit it on the nose when you said:
" It is hard for others who aren't or have or haven't been on this journey to have much valuable information, just saying! Its a tough place to be and to be sure it would be easy to offend loved ones who mean well but have no concept of what this treatment does to a person. Truly"
Truly Indeed
" It is hard for others who aren't or have or haven't been on this journey to have much valuable information, just saying! Its a tough place to be and to be sure it would be easy to offend loved ones who mean well but have no concept of what this treatment does to a person. Truly"
Truly Indeed
If your side effects continue and if you have problems working (you may not be having such problems), please remember to apply for SSDI six months or so from now. Don't let that get away from you. You may need it.
Good luck to you!
Good luck to you!
If your side effects continue and if you have problems working (you may not be having such problems), please remember to apply for SSDI six months or so from now. Don't let that get away from you. You may need it.
Good luck to you!
Good luck to you!
You have come to the right place. I read your profile so I would know a little more about you. You said you are on Pegasys and Copegus. So I assume you are Genotype 2, 3, or 4. Most of us are Genotype 1 but of course, we did Interferon and Ribavirin along with the third drug. There are several on the forum who are Genotype 2 and 3 also and a couple of Genotype 4.
I agree that it helps to share with others who have experienced the same thing, like the side effects.
Like you, I had a lot of joint and muscle aches and pains and pretty severe fatigue. I had no motivation or energy. I could not focus or concentrate. My memory was like a sieve. My usually adept mind had major difficulty grasping abstract ideas; and forget calculations of any kind. I had difficulty remembering my phone number, my zip code, names, how to shift gears, how to turn on cruise control, how to turn on the windshield wipers, words. I would forget what I was saying mid sentence and if I did get a sentence out I had to use 6 year old words because I could not remember the "big" words, LOL. I felt like an idiot saying to other that I could think of the word, usually a very common word. I went to the vet to pick up the cat, paid the bill, and walked out without the cat. LOL. I have driven back and forth attempting to exit off the highway and forgetting to exit every time my exit came into view. (Finally made it after 3 tries ... drove north, then south, then north again, LOL). My biggest frustration was not being able to focus or concentrate and having no motivation. I finally just gave in, LOL, and deiced that this was my lost year, that I was not going to get frustrated because I was getting absolutely nothing constructive done. It got a lot easier then because I did not get so frustrated.
I did 48 weeks of treatment so I got the long treatment too. I finished treatment on Aug. 25th and I feel great. Almost all of the side effects are gone and I feel better than I have felt for 19 years. My 12 week post end of treatment viral load was Undetectable (so I have 99.7% chance of cure). I have my 24 week post end of treatment viral load next month. I am hoping for SVR. I know my chances are excellent (99.7%) but I won't believe it until I see it.
So hang in there. Come here for support. Speaking of support. I made lists. I wrote everything down. I had all sorts of systems to remember, but the lists and sticky notes and calendar were my best friends and my greatest help.
I agree that it helps to share with others who have experienced the same thing, like the side effects.
Like you, I had a lot of joint and muscle aches and pains and pretty severe fatigue. I had no motivation or energy. I could not focus or concentrate. My memory was like a sieve. My usually adept mind had major difficulty grasping abstract ideas; and forget calculations of any kind. I had difficulty remembering my phone number, my zip code, names, how to shift gears, how to turn on cruise control, how to turn on the windshield wipers, words. I would forget what I was saying mid sentence and if I did get a sentence out I had to use 6 year old words because I could not remember the "big" words, LOL. I felt like an idiot saying to other that I could think of the word, usually a very common word. I went to the vet to pick up the cat, paid the bill, and walked out without the cat. LOL. I have driven back and forth attempting to exit off the highway and forgetting to exit every time my exit came into view. (Finally made it after 3 tries ... drove north, then south, then north again, LOL). My biggest frustration was not being able to focus or concentrate and having no motivation. I finally just gave in, LOL, and deiced that this was my lost year, that I was not going to get frustrated because I was getting absolutely nothing constructive done. It got a lot easier then because I did not get so frustrated.
I did 48 weeks of treatment so I got the long treatment too. I finished treatment on Aug. 25th and I feel great. Almost all of the side effects are gone and I feel better than I have felt for 19 years. My 12 week post end of treatment viral load was Undetectable (so I have 99.7% chance of cure). I have my 24 week post end of treatment viral load next month. I am hoping for SVR. I know my chances are excellent (99.7%) but I won't believe it until I see it.
So hang in there. Come here for support. Speaking of support. I made lists. I wrote everything down. I had all sorts of systems to remember, but the lists and sticky notes and calendar were my best friends and my greatest help.
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Good thing that your doc has you starting the paperwork on SSDI. You should look into getting an advocate - they dont call them lawyers - the welfare office may bring that up, mine did and had a list ready for me... they are not suppose to point anyone specific out but the advocate that was pointed out to me had a history with HepC patients and he was most excellent. One of the first things he told me, a great piece of simple advice "When ever you go into an appointment, such as a doc appt, and someone asks "How you are today?" NEVER say "Fine!" like everyone says!". "Tell anyone who asks how you really feel"! It is good that you are keeping your journal. Have a simple list of how you are feeling with maybe the top 10, or whatever, ready... since you have the brain fog like I had. I had my list on the first page in pencil and it changed.
I finally won my disability case, unfortunately, really... the meds did a real mess to me - and I hope that you will hit zero and the sides will disappear.
Also attitude is very important and humor is the best medicine... and always remember there is someone worse off than you... that keeps me going. Like, ha, 48 weeks! Due to a lab error (most likely an error) I got to do 72 weeks of Pegasys and Copegus but then my neighbor only did a couple months and got so sick had to finish early and is still crippled from it all - years later - so...