Aa
If you wouldn't mind, could you answer these questions :)
I'm asking b/c knowledge is power. I found these questions on another board and thought they were extemely informative. I know I'll be reading each and every one of your answers.
Thanks everyone! Julia
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What tx are/did you doing/did?
What sides do/did you have?
Do/did you work on tx?
If you are done with tx do you have any lasting side effects?
If done with tx are you clear?
Thanks everyone! Julia
~~~~~~~~~~~~~~~~~~~~~~~~~~~
What tx are/did you doing/did?
What sides do/did you have?
Do/did you work on tx?
If you are done with tx do you have any lasting side effects?
If done with tx are you clear?
I wondered about that during the interview process too. I would go on one interview, then sleep for a day and a half, go on another interview, etc.
My boyfriend used to get mad at me because he said I wasn't really looking for a job if I only went on 2 or 3 interviews a week. Well, what kind of job would I have gotten if I looked too exhausted to perform the job duties at the interview?
ps...long-lasting lipstick works wonders. I've been using Superstay Lipcolor by Maybelline, and I really like it.
My boyfriend used to get mad at me because he said I wasn't really looking for a job if I only went on 2 or 3 interviews a week. Well, what kind of job would I have gotten if I looked too exhausted to perform the job duties at the interview?
ps...long-lasting lipstick works wonders. I've been using Superstay Lipcolor by Maybelline, and I really like it.
thank you for sharing that with me. makes sense they see from from bad to worse right?
actually somedays i think i don't look to bad, put makeup one and stuff, but even on a good day there is this tired look and the slight fever (barely noticieable till i put a cold hand from carrying the water soothes it), and my eyes look really tired, like i haven't slept in days, not to mention the pale lips from anemia.
wonder what people would think about this look as we interview...
actually somedays i think i don't look to bad, put makeup one and stuff, but even on a good day there is this tired look and the slight fever (barely noticieable till i put a cold hand from carrying the water soothes it), and my eyes look really tired, like i haven't slept in days, not to mention the pale lips from anemia.
wonder what people would think about this look as we interview...
I'm in week #21 of 48. (I had to look it up in my notebook...sheesh!)
The other thing about this being a new job, is that when I started, I was already about 10 weeks or so into treatment. So the people there only saw me go from bad to worse, not from good to bad to worse. I'm not sure if I explained that right. They'll probably be shocked when treatment is over and I look like a normal person. LOL
The other thing about this being a new job, is that when I started, I was already about 10 weeks or so into treatment. So the people there only saw me go from bad to worse, not from good to bad to worse. I'm not sure if I explained that right. They'll probably be shocked when treatment is over and I look like a normal person. LOL
i don't recall if i know what week of how many or whatever you are at.
i tried to continue working with reduced workload, back in Nov. we have weekly staff meetings, i started showing up with dark glasses cause light was hurting my eyes, its not so bad now. i really felt strange and if i if i took the glasses off i thought people will look at and notice how horrible i looked. it wasn't the vanity that took me down though it was the sx of tx in general. awful stuff. homebound now, cats my closest friends,they like having me lay around with them most of the day. i would really rather be working though.
i tried to continue working with reduced workload, back in Nov. we have weekly staff meetings, i started showing up with dark glasses cause light was hurting my eyes, its not so bad now. i really felt strange and if i if i took the glasses off i thought people will look at and notice how horrible i looked. it wasn't the vanity that took me down though it was the sx of tx in general. awful stuff. homebound now, cats my closest friends,they like having me lay around with them most of the day. i would really rather be working though.
can someone tell me what the a's & b's mean after the genotype my doc never informed me, when i later asked based on seeing posts was told not important. it's important to me cause i want to know.
beg,
yest treatment sounds scarey, but the symptoms build up gradual you'd probably think hey i can do this, then one day it can knock you on your a## some people handle it just fine despite the nasty sides, and continue on with work. i am stressing about money now and contemplating how i can become income earning again.
hippygem
hi, you don't know me. i am curious about your tx. you mention you are a relapser. what genotype are you? how many weeks did you treat?
as mention above i am geno 2, tonight week 15. i am starting to worry about financial stuff, disability is just not enough. so i am considering shortening my tx. to 17 weeks (thats how much meds i have left at this time). will consult w/doctor about it to get more sensitive test supposedly und at 4 weeks, test used not very sensitive i am told by forum memeber <615 seems not good enough considering some go low to <2.
yest treatment sounds scarey, but the symptoms build up gradual you'd probably think hey i can do this, then one day it can knock you on your a## some people handle it just fine despite the nasty sides, and continue on with work. i am stressing about money now and contemplating how i can become income earning again.
hippygem
hi, you don't know me. i am curious about your tx. you mention you are a relapser. what genotype are you? how many weeks did you treat?
as mention above i am geno 2, tonight week 15. i am starting to worry about financial stuff, disability is just not enough. so i am considering shortening my tx. to 17 weeks (thats how much meds i have left at this time). will consult w/doctor about it to get more sensitive test supposedly und at 4 weeks, test used not very sensitive i am told by forum memeber <615 seems not good enough considering some go low to <2.
What tx are/did you doing/did?
Pegasys Riba
What sides do/did you have?
sometmes fatigued
sometimes get irratated easy
dry skin and mouth and eyes.
Do/did you work on tx?
Yes almost 6 months and only left one day early 2 hours.
I have a high demanding job.
If you are done with tx do you have any lasting side effects?
Not done yet have 3 more to go.
UND so far
Pegasys Riba
What sides do/did you have?
sometmes fatigued
sometimes get irratated easy
dry skin and mouth and eyes.
Do/did you work on tx?
Yes almost 6 months and only left one day early 2 hours.
I have a high demanding job.
If you are done with tx do you have any lasting side effects?
Not done yet have 3 more to go.
UND so far
180mcg injection peginterferon weekly. 1200mg ribavirin daily. 34 of 48 wks. Geno 1a.
Besides the normal sides, brain fog is horrible, aches are more pronounced, my hair and eyebrows stick straight out (wierd), weight loss, patches of dry itchy skin. Taking 200mg sertraline daily to make me feel good about feeling bad. Tomorrow starts the routine all over again. Thursday's are my good days.
Worked every day except for 2. Sometimes it's rough. I start to feel it around noon, but it's doable.
There is a light at the end of the tunnel...
Besides the normal sides, brain fog is horrible, aches are more pronounced, my hair and eyebrows stick straight out (wierd), weight loss, patches of dry itchy skin. Taking 200mg sertraline daily to make me feel good about feeling bad. Tomorrow starts the routine all over again. Thursday's are my good days.
Worked every day except for 2. Sometimes it's rough. I start to feel it around noon, but it's doable.
There is a light at the end of the tunnel...
Did you choose your name from the song? I've always loved that song. I have brown eyes too, but I've been told that when I get angry they turn black, LOL.
~~~~~~~~~~~~~~~
HA! That's funny! I love that song. One of my all time faves. Cheers to us brown eyed girls!
Thanks everyone for your honest answers. The post SX are freaking me out a little, but I'm hoping, like chemo most of you wont have lasting effects.
~~~~~~~~~~~~~~~
HA! That's funny! I love that song. One of my all time faves. Cheers to us brown eyed girls!
Thanks everyone for your honest answers. The post SX are freaking me out a little, but I'm hoping, like chemo most of you wont have lasting effects.
Hi there, I am geno 3, fibrosis 2 which was 3 before treatment, so it did help my liver in some way to drop a stage, I treated for 24 weeks which is the recommended time for geno 3, but they now know that if there is any stage of fibrosis geno 3 should do treatment for 48 weeks, just wish they knew that back in 2004.
I had a rough time on the treatment, as you can see by the above answers, if I did not have any stage of fibrosis I would not have done the treatment and would wait till a friendlier one came along, which is where I am at now. Here in australia they do not do maintenance treatment, and they wont let me do the treatment again. I did do another trial called ISCOMATRIX Core Vaccine Trial, 3 injections over 6 months, it was to help find a vaccine for hep c. I still have the virus and my viral load dropped down to 47,000 thereabouts, during that trial and was as high as 6 million.
All I do now is eat properly, take vitamins etc, and dont drink alcohol.
I read you want to stop tx early, many advise not to do that just in case you dont clear or it comes back then you will be kicking yourself wondering what that reason was. You have come this far, try and see it to the end. I know money issues are bad, but can you get any help from family or friends until you can get back to work? Hope it all works out well for you.
Linda
I had a rough time on the treatment, as you can see by the above answers, if I did not have any stage of fibrosis I would not have done the treatment and would wait till a friendlier one came along, which is where I am at now. Here in australia they do not do maintenance treatment, and they wont let me do the treatment again. I did do another trial called ISCOMATRIX Core Vaccine Trial, 3 injections over 6 months, it was to help find a vaccine for hep c. I still have the virus and my viral load dropped down to 47,000 thereabouts, during that trial and was as high as 6 million.
All I do now is eat properly, take vitamins etc, and dont drink alcohol.
I read you want to stop tx early, many advise not to do that just in case you dont clear or it comes back then you will be kicking yourself wondering what that reason was. You have come this far, try and see it to the end. I know money issues are bad, but can you get any help from family or friends until you can get back to work? Hope it all works out well for you.
Linda
180 peginterferon along with riba 8oo (weight based dose)
I was supposed to go 48 weeks, lasted 25. Sx were intolerable, possible due to very strenous job, ran a very large convenience store, and never got to sit down, 18 hour days. Got anemic, went on procrit, got alittle better, but still ill.
I never had nausea once, but I would spin out behind the dizziness, unable to eat,...everything tasted like I was sucking on a mouth full of quarters.
Unable to sleep, when I did, it was non-recoperative.
Lots of mental sx as well, buzzing in my head, depression, paraniod thoughts. Unable to focus on small things. Lost tons of weight ,...but lost tons beofore I even started.
6 months post tx I have only gained 1 lb back, I do not believe I am clear, but no ins. cant afford PCR.
I am guessing due to all the fatigue, stomach problems.
I still seem to suffer long term memory loss. I am also dealing with major joint issues. My wrist feels like someone is putting a cigarette out on it everytime I use it. I am living off of naproxen, only thing that helps the pain.
I was supposed to go 48 weeks, lasted 25. Sx were intolerable, possible due to very strenous job, ran a very large convenience store, and never got to sit down, 18 hour days. Got anemic, went on procrit, got alittle better, but still ill.
I never had nausea once, but I would spin out behind the dizziness, unable to eat,...everything tasted like I was sucking on a mouth full of quarters.
Unable to sleep, when I did, it was non-recoperative.
Lots of mental sx as well, buzzing in my head, depression, paraniod thoughts. Unable to focus on small things. Lost tons of weight ,...but lost tons beofore I even started.
6 months post tx I have only gained 1 lb back, I do not believe I am clear, but no ins. cant afford PCR.
I am guessing due to all the fatigue, stomach problems.
I still seem to suffer long term memory loss. I am also dealing with major joint issues. My wrist feels like someone is putting a cigarette out on it everytime I use it. I am living off of naproxen, only thing that helps the pain.
A time or two (or three) people have asked me at work if I'm feeling OK, kind of in a concerned way. I just tell them yes I'm OK, I was just up late with the baby. (I have a 2 year-old granddaughter who I watch most nights while my daughter works). Since I'm new to the company, they can't just come up and say "you look like cr@p", like someone would have at my old job, LOL.
I don't know if I'm really fooling anybody, but I think that having to push myself on through the day and act normal is probably better than just giving in to the treatment and laying in bed all day(which I could easily do!). Anyway, I don't have much of a choice, I really can't tell anyone at work, so who knows what they're thinking?
I don't know if I'm really fooling anybody, but I think that having to push myself on through the day and act normal is probably better than just giving in to the treatment and laying in bed all day(which I could easily do!). Anyway, I don't have much of a choice, I really can't tell anyone at work, so who knows what they're thinking?
Q) What tx are/did you doing/did?
A) Treated with Pegasys/riba from 2/05 thru 3/06. Due to a slow viral response at twelve weeks, increased riba from 1200 mg/day to 1800 mg/day, and extended to 56 weeks. Eventually achieved undetectable but relapsed within 30 days post-Tx. Current treatment commenced 9/06 with Peg-Intron/riba, both off-label in terms of dosage. ~200 mcg/week Peg-Intron, and 2000 mg/day riba, for a projected 72 weeks. Currently on week 25 of 72.
Q) What sides do/did you have?
A) Last treatment I dealt with moderate depression, some cognitive issues (difficulty reading/writing), fatigue, mild antisocial behavior, and significant diarrhea for the second half of Tx. Current treatment has been much kinder; so far just a few dry skin issues (especially ends of fingers), and some nuisance-level anger management problems. Again, quite doable. I consider ongoing blood sugar management for diabetes to be much more time consuming and challenging than HCV management at this juncture.
Q) Do/did you work on tx?
A) No. Emphatically, no. I was feeling ill for at least two years prior to diagnosis for HCV. Extreme fatigue was a major component, and I stopped working about 6 months before they finally found HCV. I applied for and received SSI disability. The entitlement was granted for HCV, stage 3-4 hepatic fibrosis with hepatosplenomegaly, and periodic, long-term depression coupled with general anxiety disorder.
Q) If you are done with tx do you have any lasting side effects?
A) Most side effects subsided within 5-7 days post-treatment. Some lingering issues with diarrhea and lower GI persisted for 2-3 weeks.
Q) If done with tx are you clear?
A) As I mentioned above, I experienced viral relapse within 30 days post treatment. However, I think it's important to consider two possible end points to Tx. The obvious one is viral eradication, or SVR. However; with only about 45-50% GT-1 patients achieving this goal, a second and acceptable end point that is often overlooked is improved histology. In my case, a post-Tx ultrasound showed significant improvement in spleen size. This alone would suggest improvement in synthetic liver function, therefore justifying treatment, IMHO.
A) Treated with Pegasys/riba from 2/05 thru 3/06. Due to a slow viral response at twelve weeks, increased riba from 1200 mg/day to 1800 mg/day, and extended to 56 weeks. Eventually achieved undetectable but relapsed within 30 days post-Tx. Current treatment commenced 9/06 with Peg-Intron/riba, both off-label in terms of dosage. ~200 mcg/week Peg-Intron, and 2000 mg/day riba, for a projected 72 weeks. Currently on week 25 of 72.
Q) What sides do/did you have?
A) Last treatment I dealt with moderate depression, some cognitive issues (difficulty reading/writing), fatigue, mild antisocial behavior, and significant diarrhea for the second half of Tx. Current treatment has been much kinder; so far just a few dry skin issues (especially ends of fingers), and some nuisance-level anger management problems. Again, quite doable. I consider ongoing blood sugar management for diabetes to be much more time consuming and challenging than HCV management at this juncture.
Q) Do/did you work on tx?
A) No. Emphatically, no. I was feeling ill for at least two years prior to diagnosis for HCV. Extreme fatigue was a major component, and I stopped working about 6 months before they finally found HCV. I applied for and received SSI disability. The entitlement was granted for HCV, stage 3-4 hepatic fibrosis with hepatosplenomegaly, and periodic, long-term depression coupled with general anxiety disorder.
Q) If you are done with tx do you have any lasting side effects?
A) Most side effects subsided within 5-7 days post-treatment. Some lingering issues with diarrhea and lower GI persisted for 2-3 weeks.
Q) If done with tx are you clear?
A) As I mentioned above, I experienced viral relapse within 30 days post treatment. However, I think it's important to consider two possible end points to Tx. The obvious one is viral eradication, or SVR. However; with only about 45-50% GT-1 patients achieving this goal, a second and acceptable end point that is often overlooked is improved histology. In my case, a post-Tx ultrasound showed significant improvement in spleen size. This alone would suggest improvement in synthetic liver function, therefore justifying treatment, IMHO.
What tx are/did you doing/did?
Peg-Interferon with 800 mg Riba 4 daily, 24 weeks in 2004, geno 3, fibrosis 3 (fibrosis dropped to stage 2 after tx)
What sides do/did you have?
Aches and pains all over body, confusion, brain fog, extreme tiredness, weight loss, emotional, depression, rashes, sweats/chills, headaches, back pain, liver pain, itchiness, loss of hair, like living in another world, blurred vision
Do/did you work on tx?
Did not work, could not work.
If you are done with tx do you have any lasting side effects?
Cognitive issues, forgetfulness, fatigue, anxiety, depression, mouth ulcers, cracked lips
If done with tx are you clear?
I was undetected during treatment, but when i had the 6 month post tx blood tests results showed the virus had returned, so I am a Relapser.
Its quite a journey and one that we all go on differently, I wish you well with yours, and hope you dont get too discouraged. We can only try cant we.
Good luck.
Linda
Peg-Interferon with 800 mg Riba 4 daily, 24 weeks in 2004, geno 3, fibrosis 3 (fibrosis dropped to stage 2 after tx)
What sides do/did you have?
Aches and pains all over body, confusion, brain fog, extreme tiredness, weight loss, emotional, depression, rashes, sweats/chills, headaches, back pain, liver pain, itchiness, loss of hair, like living in another world, blurred vision
Do/did you work on tx?
Did not work, could not work.
If you are done with tx do you have any lasting side effects?
Cognitive issues, forgetfulness, fatigue, anxiety, depression, mouth ulcers, cracked lips
If done with tx are you clear?
I was undetected during treatment, but when i had the 6 month post tx blood tests results showed the virus had returned, so I am a Relapser.
Its quite a journey and one that we all go on differently, I wish you well with yours, and hope you dont get too discouraged. We can only try cant we.
Good luck.
Linda
what tx am I doing? Peg-Interferon with 800 mg Riba (2 pills in AM and 2 pills PM) Peg-Int is 180 mcg vial injection weekly
what are sides I have so far? I have had 4 shots so far (I'm geno 2b - told 24 wk tx program). What I notice the most is fatigue and it comes out of nowhere. Feel pretty good and all of a sudden "wham!" If I rest, I tend to gather steam once again. I have various aches, mainly through my back/spine area, and I just recently got a couple cold sores on outside of my mouth. (I do have the herpes virus, so I don't know if these sores are from that, as stress brings them on). My mood seems to change on an hourly basis (ha ha)----will shed tears for no reason, except I am tired of being "tired". If this is as bad as it gets, I can handle, and will try not to complain.
do you work? I work out of my house. I handle various matters for my husband who has his own business. While not demanding, certain things have to be done, but do have flexibility.
lasting sides and am I clear? only into tx for 4 weeks. I'm counting 20 left to go--hoping not that long, but realize 24 weeks is the program.
what are sides I have so far? I have had 4 shots so far (I'm geno 2b - told 24 wk tx program). What I notice the most is fatigue and it comes out of nowhere. Feel pretty good and all of a sudden "wham!" If I rest, I tend to gather steam once again. I have various aches, mainly through my back/spine area, and I just recently got a couple cold sores on outside of my mouth. (I do have the herpes virus, so I don't know if these sores are from that, as stress brings them on). My mood seems to change on an hourly basis (ha ha)----will shed tears for no reason, except I am tired of being "tired". If this is as bad as it gets, I can handle, and will try not to complain.
do you work? I work out of my house. I handle various matters for my husband who has his own business. While not demanding, certain things have to be done, but do have flexibility.
lasting sides and am I clear? only into tx for 4 weeks. I'm counting 20 left to go--hoping not that long, but realize 24 weeks is the program.
hi i am at week 15 geno2,
i have similar sides as FL gal. so no need to repeat. actually wanted to comment to you FL gal. i know what you mean about complaining and no one really listening. i guess i can't deny that i'm a complainer, and i tried explaining, sometimes even had to plead they just don't understand the seriousness of the treatment.
Fl gal, i wonder how you will manage with people noticing your progressive physical changes. must be hard to hide it. (i decided to share my situation with my supervisor, made it easier when i realized i couldn't work anymore). i actually, would like to make a career change right now, but feel i couldn't do myself justice. but i guess we all do what we have to do when we have to do it. make sense? i am rambling. goodnight
good luck when you begin or as you begin tx. plan for plan B, if something happens and you can not work, or reduce work load if you can.
i have similar sides as FL gal. so no need to repeat. actually wanted to comment to you FL gal. i know what you mean about complaining and no one really listening. i guess i can't deny that i'm a complainer, and i tried explaining, sometimes even had to plead they just don't understand the seriousness of the treatment.
Fl gal, i wonder how you will manage with people noticing your progressive physical changes. must be hard to hide it. (i decided to share my situation with my supervisor, made it easier when i realized i couldn't work anymore). i actually, would like to make a career change right now, but feel i couldn't do myself justice. but i guess we all do what we have to do when we have to do it. make sense? i am rambling. goodnight
good luck when you begin or as you begin tx. plan for plan B, if something happens and you can not work, or reduce work load if you can.
Did you choose your name from the song? I've always loved that song. I have brown eyes too, but I've been told that when I get angry they turn black, LOL.
Your questions:
What tx are/did you doing/did?
pegintron + riba 1000mg per day. 2 capsules a.m., 3 capsules p.m. This is my first (and I hope ONLY) treatment. I am a 1b, so I have 48 weeks, I'm almost halfway there at 20 weeks.
What sides do/did you have?
They really vary. The debilitating fatigue is always there. I get angry at everybody. Weight loss. My depression (which I've had for years [unless that was undiagnosed HCV instead]) is worse. I cry at the drop of a hat. Everything tastes salty, even my water. Migraine headaches. Extreme sensitivity to light and sound. Confusion, inability to focus...but some of that may be from having this new job with a steep learning curve that just gets steeper every day, and it may also be due to losing my insurance coverage for the Provigil I've been taking for years and now had to stop. I forget a lot of conversations. Even though my body is so exhausted all the time, I can't sleep at night. My skin hurts, off and on. My tongue has painful blisters. Blurry eyesight. Every small cut or injury I get becomes horribly infected. My hair is thinning a lot, and what is left is brittle, dull, and lifeless. My family hates being around me, they probably feel I'm exagerrating or making things up, so I've tried to stop complaining (but I have to admit, I'm not always very nice to them either). I'm now starting to throw up in the mornings when I wake up. I'm sure there's more, but when a side effect isn't "presenting" currently, I tend to forget about it until it comes back, haha. I sure hope they all go away after TX.
Do/did you work on tx?
Yes, I have no choice. I need money for mortgage, food, etc., and I need health insurance. Since it's a new job (and not a "HepC friendly" one), I've been keeping the whole situation on the "down-low", but people are starting to notice and ask if I am OK. I don't know how much longer I can hide it and I am not a good liar.
If you are done with tx do you have any lasting side effects?
N/A
If done with tx are you clear?
I'm not done, but I was UND at my week 10 PCR, the only one I've had since starting TX.
Hope this helps, and doesn't scare you off. The one good side effect is that I've met some great people on this forum! ;))
Your questions:
What tx are/did you doing/did?
pegintron + riba 1000mg per day. 2 capsules a.m., 3 capsules p.m. This is my first (and I hope ONLY) treatment. I am a 1b, so I have 48 weeks, I'm almost halfway there at 20 weeks.
What sides do/did you have?
They really vary. The debilitating fatigue is always there. I get angry at everybody. Weight loss. My depression (which I've had for years [unless that was undiagnosed HCV instead]) is worse. I cry at the drop of a hat. Everything tastes salty, even my water. Migraine headaches. Extreme sensitivity to light and sound. Confusion, inability to focus...but some of that may be from having this new job with a steep learning curve that just gets steeper every day, and it may also be due to losing my insurance coverage for the Provigil I've been taking for years and now had to stop. I forget a lot of conversations. Even though my body is so exhausted all the time, I can't sleep at night. My skin hurts, off and on. My tongue has painful blisters. Blurry eyesight. Every small cut or injury I get becomes horribly infected. My hair is thinning a lot, and what is left is brittle, dull, and lifeless. My family hates being around me, they probably feel I'm exagerrating or making things up, so I've tried to stop complaining (but I have to admit, I'm not always very nice to them either). I'm now starting to throw up in the mornings when I wake up. I'm sure there's more, but when a side effect isn't "presenting" currently, I tend to forget about it until it comes back, haha. I sure hope they all go away after TX.
Do/did you work on tx?
Yes, I have no choice. I need money for mortgage, food, etc., and I need health insurance. Since it's a new job (and not a "HepC friendly" one), I've been keeping the whole situation on the "down-low", but people are starting to notice and ask if I am OK. I don't know how much longer I can hide it and I am not a good liar.
If you are done with tx do you have any lasting side effects?
N/A
If done with tx are you clear?
I'm not done, but I was UND at my week 10 PCR, the only one I've had since starting TX.
Hope this helps, and doesn't scare you off. The one good side effect is that I've met some great people on this forum! ;))
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