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In 32nd week of 48 for Hepititis C treatment and I'm feeling worse. Is this normal?
When I started the Pegasys/Copegus treatment for Hepititis C, the specialist told me that in about one month my body will have adjusted and I would feel better. That didn't happen. I feel worse now than ever. This treatment has sucked the life out of me and lately I can't even get out of bed long enough to eat. I've lost over 40 lbs. and feel sick every day since November 17, 2006.
I am starting to be quite concerned about my health. When the doctors ask how I'm feeling, I think they expect a positive response and I just can't give it to them. Sometimes I feel like such a loser because I'm not coping well. I've been hospitalized twice for anemia and dehydration and now I have COPD to add to my mess. Also I have hemochromotosis (but that's another story). My ferritin has gone from 40 to over 1,000.
My question is, will I really start to feel better when this treatment ends? I actually feel suicidal sometimes. I am 63 years old.
Thank you.
I am starting to be quite concerned about my health. When the doctors ask how I'm feeling, I think they expect a positive response and I just can't give it to them. Sometimes I feel like such a loser because I'm not coping well. I've been hospitalized twice for anemia and dehydration and now I have COPD to add to my mess. Also I have hemochromotosis (but that's another story). My ferritin has gone from 40 to over 1,000.
My question is, will I really start to feel better when this treatment ends? I actually feel suicidal sometimes. I am 63 years old.
Thank you.
Hi
I am not in a clinical trial. I was not failed for I did get to under 47% and 43% Viral load, I am a relasper. The hepatitus clinic would not partake in trials where placebos where given. The FDA Trials are over for Incivek and can be offered to any patient who has the proper medical insurance coverage as of Spring of 2011. I am in treatment like I am a first time patient. I would have seen the same liver specialist I saw in year two but he could not take me into his patient list until March this year due to patient doctor follow up, so I am seeing another health liver specialist that I had in year one. I started up in October pretreatment and started tripple treatment in November and my last blood test said it is undetectable under 7% viral load so wish me luck. I took a special genetic test L28R??? to even be considered for retreatment.
Punky169
I am not in a clinical trial. I was not failed for I did get to under 47% and 43% Viral load, I am a relasper. The hepatitus clinic would not partake in trials where placebos where given. The FDA Trials are over for Incivek and can be offered to any patient who has the proper medical insurance coverage as of Spring of 2011. I am in treatment like I am a first time patient. I would have seen the same liver specialist I saw in year two but he could not take me into his patient list until March this year due to patient doctor follow up, so I am seeing another health liver specialist that I had in year one. I started up in October pretreatment and started tripple treatment in November and my last blood test said it is undetectable under 7% viral load so wish me luck. I took a special genetic test L28R??? to even be considered for retreatment.
Punky169
Is Punky in some kind of a clinical trial for Type 2's that fail treatment? Now i'm confused, ha...
I didn't know they use the triple therapy for type 2's
--------------------------------------------------------------
Incivek & Victrelis are only approved for G 1"s
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Incivek & Victrelis are only approved for G 1"s
You do realize that this post was started 5 yrs ago?
Anyway, I am also a type 2 (2b), starting the Peg/Rib therapy today.
So treatment didn't work for you the first 2 times? I didn't know they use the triple therapy for type 2's, but I guess I just assumed that just about all type 2's get SVR. Good to know there is a back up plan incase things don't go as I expect.
Anyway, I am also a type 2 (2b), starting the Peg/Rib therapy today.
So treatment didn't work for you the first 2 times? I didn't know they use the triple therapy for type 2's, but I guess I just assumed that just about all type 2's get SVR. Good to know there is a back up plan incase things don't go as I expect.
Hello Barbsgarden.
Yes, it is normal for you to feel worse as your treatment plan progresses to week 48. Remember you are eradicating a disease and you are going through a chemo like treatment. You are almost done:0)))))!!!! This will tax both your body functions and your emotional well being. Your blood test CBC must be real low along with your engery levels. You are almost done with your treatment and just remember to take it 1 day at a time. Rest when you can and remember to eat when you can and drink water at all times.
I am in week 9 in my third year now and I have learned to keep myself busy but in moderations. I do hobbys and read, sew, make jams and crafts. I keep positive about a cure and I try hard to not let hep c effect my lifestyle. I have to stop to rest more often and sometimes I have to just rest and do nothing all week but watch tv and read my kindle. I park in the handicap spots and ride the carts at the stores. I try to keep myself mobile and active. The key is to not over tax your strength. I have tried to mow a yard and rake it. I barley made it back to the couch in time before I collasped after doing one partial row on the lawn. This past christmas shopping season I had to crawl up the stairs to my bed on my hands and knees. Holiday dinner was cooked and served to my guests. I learned to go sit down and delegate clean up. Try to keep in touch with friends and family, it is just nice to have one person listen to.how you feel.
Are you on the telaprevir? My wbc is down to 1.06 I am tired & dizzy. I panic when I sneeze. RBC are low too, I also have COPD and have blue lips. Just remember to listen and do exactly what you doctor tells you to do.
I am finishing up my last month of the Incivek but have to finish up rest of the year with shots and ribavirin pills. This is only Week 9 for me. My first year was 1 weekly shot in the stomach & Ribvirin pills 48 weeks. 2nd year I had dailey shots in the legs and white pills for 48 weeks. Third year 1 shot every Friday in the stomach and 2 pills of Incivek 3 times a day and 2 ribavirin pills in mornings and 3 at night. I have a timmer to keep me on my medication schedule. I can't wait to throw it away in a out house when I'm done.
The Incivek has given me a bad rash on my legs and nausea is bad at times. I use a melt in your mouth pill to help me eat. I stopped eating meat now to. The first and second year it took about 6 months to finally feel normal and get all my engery back. My viral load is under 7 now. :0)))). Will it go back up after I finish my year long treatment, I don't know???? It has each time 1 month after treatment stopped.
Always remember they are working on new treatments and in 5 years the new drug will replace all shots. I am hep c geno type 2a. I Have both the T and P genetics cells. I have 63% this go around of a cure. I am in stage three liver disease- bridging fibrose fatty liver scarring. 48 weeks is a long time:0(((( Hang in there and go to dogpile.com search engine on the internet and do research on treatments.
Punky69
Yes, it is normal for you to feel worse as your treatment plan progresses to week 48. Remember you are eradicating a disease and you are going through a chemo like treatment. You are almost done:0)))))!!!! This will tax both your body functions and your emotional well being. Your blood test CBC must be real low along with your engery levels. You are almost done with your treatment and just remember to take it 1 day at a time. Rest when you can and remember to eat when you can and drink water at all times.
I am in week 9 in my third year now and I have learned to keep myself busy but in moderations. I do hobbys and read, sew, make jams and crafts. I keep positive about a cure and I try hard to not let hep c effect my lifestyle. I have to stop to rest more often and sometimes I have to just rest and do nothing all week but watch tv and read my kindle. I park in the handicap spots and ride the carts at the stores. I try to keep myself mobile and active. The key is to not over tax your strength. I have tried to mow a yard and rake it. I barley made it back to the couch in time before I collasped after doing one partial row on the lawn. This past christmas shopping season I had to crawl up the stairs to my bed on my hands and knees. Holiday dinner was cooked and served to my guests. I learned to go sit down and delegate clean up. Try to keep in touch with friends and family, it is just nice to have one person listen to.how you feel.
Are you on the telaprevir? My wbc is down to 1.06 I am tired & dizzy. I panic when I sneeze. RBC are low too, I also have COPD and have blue lips. Just remember to listen and do exactly what you doctor tells you to do.
I am finishing up my last month of the Incivek but have to finish up rest of the year with shots and ribavirin pills. This is only Week 9 for me. My first year was 1 weekly shot in the stomach & Ribvirin pills 48 weeks. 2nd year I had dailey shots in the legs and white pills for 48 weeks. Third year 1 shot every Friday in the stomach and 2 pills of Incivek 3 times a day and 2 ribavirin pills in mornings and 3 at night. I have a timmer to keep me on my medication schedule. I can't wait to throw it away in a out house when I'm done.
The Incivek has given me a bad rash on my legs and nausea is bad at times. I use a melt in your mouth pill to help me eat. I stopped eating meat now to. The first and second year it took about 6 months to finally feel normal and get all my engery back. My viral load is under 7 now. :0)))). Will it go back up after I finish my year long treatment, I don't know???? It has each time 1 month after treatment stopped.
Always remember they are working on new treatments and in 5 years the new drug will replace all shots. I am hep c geno type 2a. I Have both the T and P genetics cells. I have 63% this go around of a cure. I am in stage three liver disease- bridging fibrose fatty liver scarring. 48 weeks is a long time:0(((( Hang in there and go to dogpile.com search engine on the internet and do research on treatments.
Punky69
Are you on antidepressents for your thoughts maybe you need to see about changing or adding something else with it. Because this does give you suicidal thoughts.
You will get back to norm as you were before or close after tx. I did of course everyone different but you might have some lingering brain fog but that goes with age too lol. Of course the older you are the harder it is on the body. I'm gonna be 50, and the first tx I was 44 defenitly different now. GOOD LUCK
My wheels came week 32. I'm now in week 40 and things seem to have eased up for now.
I'm into wk 17 and somedays I feel like ****, when I first started tx I had tons of energy then it collapsed, so I know where your coming from. My hemoglobin got low and sucked my life but they started me on folic acid 2mon. ago and hemo. is good now and I'm strutton right along. GOOD LUCK
Hi - I'm just starting treatment. I live in Fairbanks Alaska and there are no doctors here who can treat me so I have to move to Anchorage. Am I going to get sick? I don't feel sick right now, on the contrary, I feel great. I've just recently won a battle against cancer and when I had some blood work done last month they found Hep C. My numbers (what does that mean?) are in the millions. Is that bad? I wish I could stay here with my family but my doctor referred me to a specialist in Anchorage. Also - I have a rare blood type - does this make a difference? Please - if you r feelin up to it - i'd love to talk to you and learn about my options. Very scared, lonely and just starting the shots. Barbsgarden
Are you still on that treatment? You should have stop the treatment after the first month. Especially if it made you worse. I hope your feeling better. I was diagnosed in 1984 and have not had any treatment at all. I get regular checkups with the specialist. I'm waiting for some advancements in the treatment so I don't have to go through what you have experienced. God Bless you and keep you.
Love
Love
Thank you all for your words and suggestions. I was feeling so alone in all this and I have recently started taking better care of my body in terms of doing "something" other than resting all the time.
Today I have an upbeat attitude and it's because of this forum.
Today I have an upbeat attitude and it's because of this forum.
i have nothing to add except to emphasize the importance of hydrating and eating enough. this treatment surely is suicide if those elements are neglected.
use orphanedhawks tricks and hang in there. also im a big beleiver in positive mental attitude, and i know as much as anyone how truly difficult it is to
see light when your body tells you that the sun is not shining.
utilize every trick available (including ADs) to bring your attitude back.
post more often, we love to listen to you and help you.
use orphanedhawks tricks and hang in there. also im a big beleiver in positive mental attitude, and i know as much as anyone how truly difficult it is to
see light when your body tells you that the sun is not shining.
utilize every trick available (including ADs) to bring your attitude back.
post more often, we love to listen to you and help you.
"My question is, will I really start to feel better when this treatment ends? I actually feel suicidal sometimes. I am 63 years old."
FIRST --- AND MOST IMPORTANT:
The combo treatment CAN... DOES... Cause Suicidal IDEATION.
Understand that.
Most people (not all) go from perfectly healthy minds --- to having ocassional thoughts about suicide.
If you start feeling that way - STOP YOURSELF from going down that path --- it is the MEDICINE causing it. It is a KNOWN Fact that Suicidal tendencies or thoughts are one of the side effects.
If you can't stop yourself from thinking about it - get some help - or something to get out of it.
Know that it isn't REAL --- those are just thoughts flickering through your mind --- and just think about something else...
OK?
Second - yeah - you're at the suckiest medication point in the world.
And you may have an uphill climb for about a year.
But - you are making your body better.. and you're giving your body a chance to heal.
So Here's giving you the truth in a nutshell - it sucks... But it is worth it.
AND IT WILL GET BETTER... It just may seem like it is taking forever.
I'm still having massive sx after tx -- and I'm almost 4 months post... But just got SVR and dropped by my hepatologist --- So I AM getting better. I just have to get rid of the poisons in my body.
And it WILL get better for you too.
Meki
FIRST --- AND MOST IMPORTANT:
The combo treatment CAN... DOES... Cause Suicidal IDEATION.
Understand that.
Most people (not all) go from perfectly healthy minds --- to having ocassional thoughts about suicide.
If you start feeling that way - STOP YOURSELF from going down that path --- it is the MEDICINE causing it. It is a KNOWN Fact that Suicidal tendencies or thoughts are one of the side effects.
If you can't stop yourself from thinking about it - get some help - or something to get out of it.
Know that it isn't REAL --- those are just thoughts flickering through your mind --- and just think about something else...
OK?
Second - yeah - you're at the suckiest medication point in the world.
And you may have an uphill climb for about a year.
But - you are making your body better.. and you're giving your body a chance to heal.
So Here's giving you the truth in a nutshell - it sucks... But it is worth it.
AND IT WILL GET BETTER... It just may seem like it is taking forever.
I'm still having massive sx after tx -- and I'm almost 4 months post... But just got SVR and dropped by my hepatologist --- So I AM getting better. I just have to get rid of the poisons in my body.
And it WILL get better for you too.
Meki
"getting tired of this Sh**! Seems like I've hit the wall. Body aches, flulike symptoms,tired. It's like the first couple weeks." This was my entry in my journel at week 32. In fact, I posted this. Hang in there MaryPat. It's going to get better.
My heptologist/surgeon/research specialist told me that the effects of treatment are accumulative. But yes, you will probably feel better. And the extreme emotions can also be from tx. Are you taking neupogen? That one almost put me over the edge. I don't usually advocate AD's but if you are feeling suicidal, you should consider taking one.
I've found that some days or weeks are better than others. When I'm energized, I go for it. I take my walk, do what chores I can, and when I feel tired I rest. Unless I'm really fatigued I try to at least do a little stretching or walking.
Is anyone there to help you? On the worst mornings I've had my husband make oatmeal for me and I eat it in bed. Its crazy but I often feel nauseous because I'm hungry. MAKE yourself eat. It doesn't matter if its only one bite. And make smoothies, add flax seed for fat. Eat whatever you can. I ate three cheesecakes in a month and gained 2 pounds. I've never been able to eat more than just one piece but there you go. It tasted great. Eat icecream. Take it one day at a time and remember this is just on chapter in the book of your life. Please take care of yourself. OH
I've found that some days or weeks are better than others. When I'm energized, I go for it. I take my walk, do what chores I can, and when I feel tired I rest. Unless I'm really fatigued I try to at least do a little stretching or walking.
Is anyone there to help you? On the worst mornings I've had my husband make oatmeal for me and I eat it in bed. Its crazy but I often feel nauseous because I'm hungry. MAKE yourself eat. It doesn't matter if its only one bite. And make smoothies, add flax seed for fat. Eat whatever you can. I ate three cheesecakes in a month and gained 2 pounds. I've never been able to eat more than just one piece but there you go. It tasted great. Eat icecream. Take it one day at a time and remember this is just on chapter in the book of your life. Please take care of yourself. OH
One other thing I'd like to express, If you should feel your getting into a corner just post, post about anything, just post.
jasper
jasper
Other than what has been prescribed by your doctor are you taking any other victims or herbal remedies in addition to? Just a question.
Thanks
jasper
Thanks
jasper
Congradulations on making it to week 32! You are almost 3/4 the way done! I remember feeling around my 28th week that false sense of securtiy that maybe it wasn't too bad.Then came my 32nd! I think that is a tough time for everyone. Keep taking care of yourself and getting rest. Like Florida Guy said find something to keep your mind occupied. I have been planting flowers...even if I do one at a time then rest. It does give you a sense of occomplishment(sp)
Now if I could get someone to weed them!!! Take care, -Libby
Week 42 of 48 Yes!
Now if I could get someone to weed them!!! Take care, -Libby
Week 42 of 48 Yes!
I had the same experience as you. I expected to feel the worst in the 1st couple months so i didn't make any plans for that time. WELL, it turned out that i felt pretty good up until the 4th month. Then it was down hill from there. I finished tx 2 months ago and i feel wonderful, back to normal. Hang in there, it gets better.
One thing that has helped me (and this is second time around) is to try to fight the inactivity. Even a small step up in physical activity can be beneficial to your appetite, energy level and outlook. Leaves a litte less time to ponder the world as it it. Try to get and get out. Sometimes it's hard to the face the world when your on this stuff, but you can still keep good company with yourself and continued accomplishments on treatment. Rekindle something that interested you before treatment started, You'll be done before you know it. Good news on the und. and the enzymes!
Thank you for talking to me. I am feeling very alone through this treatment. I live alone and have taken a year off work. I'm not used to being so inactive.
Your words have given me some encouragement.
I am doing regular bloodwork once a month before seeing the specialist and my liver functions are normal and my viral load in undetected.
Guess I just needed somebody to talk to who is going through this.
Your words have given me some encouragement.
I am doing regular bloodwork once a month before seeing the specialist and my liver functions are normal and my viral load in undetected.
Guess I just needed somebody to talk to who is going through this.
I don't think that it's reasonable to believe that the side effects of the treatment will be consistent from beginning to end of treatment. These are some powerful and nasty drugs that can have varied impacts to your health, life and psyche. It's long and it's tough and end the meds come with psych warnings. Any conversation with your doc should be open and honest without regard to what doc think you should think or feel. I bet your doc was never taking this ****. Are you having regular blood work? I assume so since you have hgb challenges and there are other 'rescue' drugs to deal with that. Of more concern might be your emotional condition. Talk to the doc about what you are feeling - there may be something that can help there too. I'm in week 35 and lots of people who are as far down the path as you know what you're going through.
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