Hi DJ, so we have same med brand? (PegIntron and Rebatol?) great you don't have any sx!!...first 2 weeks i only had 6-12hr sx after injection (tho tinnitus all the time), as i am going into 5th week i have sx on daily basis...i also heard stories about 3month into therapy things can get nasty...friend who did 48weeks told me his first 3 months were worst, later was easier. I guess sx are pretty much individual. Hope you stay "needed" at home ) Do you have/had fatty liver?
Well I am on Pegintron and ribasphere, so not our injections are the same and I think the pills are very similar. And I wouldn't say I haven't had any side effects. Just nothing awful. The first night, I did have a fever. There was one that I got sick. But for the past few nothing really. I had my injection last night and don't feel any different than a day ago.
The Ribaviran causes me side effects. I feel 'dizzy' (off balance) and I am thirsty and tired. Those are the main symptoms I have had. The dizzy lasts about 4 hours after taking ribaviran. So basically I run errands in the morning before I take my pills at 11:00. Then I take a nap in the afternoon to sleep through the 'dizzy' and then I take the ribaviran again at 11:00 pm and sleep through the dizzy for that.
But the tired is always there. We have a two story house and I find myself resting a bit after carrying up laundry to put away. And I have water with me almost all the time because I am usually thirsty.
I haven't had any pain, no headaches, and only got sick to my stomach once (other than that, I have no problem eating....tonight is Olive Garden night for me :) ).
Hope things go well for you. As I said.....having the luxary of being at home has been wonderful. I have no idea how I would be handling all of this if I had to be at a job 8 hours a day.
Oh and my liver is still in good shape. I had to switch doctors because the one I was seeing did not want to treat me since my liver still looks good and she said there was no rush.....well I didn't see things like that. I want to take care of it now while I can stay home and take care of myself and just get it over with so that I can hopefully go back to work again after this and go on with my life. So after 4 months of her delaying and her telling me there was no rush and putting off my treatment, I switched doctors and was able to start treatment in just 3 weeks and am on my way to kicking this thing. I don't see the point of waiting until you have liver problems to treat. Maybe I just don't understand it well enough, but I would prefer to get rid of this virus before it causes damage. So anyway...to answer your question. Not damage to my liver yet. Hopefully it will stay that way.
(......sort of makes me wonder......do you think I have less side effects because my liver isn't damaged? Maybe that helps process the medicine better without so many side effects? just a thought...I really have no idea).
Zlikster said
Feb 23, 2013
Hi DJ, so we have same med brand? (PegIntron and Rebatol?) great you don't have any sx!!...first 2 weeks i only had 6-12hr sx after injection (tho tinnitus all the time), as i am going into 5th week i have sx on daily basis...i also heard stories about 3month into therapy things can get nasty...friend who did 48weeks told me his first 3 months were worst, later was easier. I guess sx are pretty much individual. Hope you stay "needed" at home ) Do you have/had fatty liver?
Zlikster said
Feb 23, 2013
Hi Malcolm, keeping fingers crossed for your UND @ week 8 yeah, i saw few articles how PegIntron is a tad less effective than Roche's Pegasys and also few people on this forum mentioned that they had more severe sx with PegIntron...then again DJ doesn't have any sx with it
DJ said
Feb 23, 2013
I have Genotype 3 also and just took my seventh shot. Sorry you are having so many bad side effects. I haven't had problems with appetite or weight loss (I actually wanted that one). I do feel tired. I think perhaps one reason I don't notice too many side effects is because I am a stay at home mom with kids who are in college. I had actually 'planned' to stay home through high school (volunteering at their sporting events and things like that) and THEN was going to start looking for a part time job....well the month after they graduated high school I donated blood for the first time and found out I had Hep C. So of course, looking for a job was put on hold. So now I am able to just rest and take care of myself for the most part (still trying to keep up with things around the house....I need to stay 'needed' to some degree). So anyway, I know I have said I haven't had many side effects, and I am thankful for that, but I have to wonder what I would be feeling if I were off to a job every day. Anyway, hang in there. I am on Pegatron and Ribasphere (1200 daily). Hope things get better for you. My doctor told me around month 3 things can get a little worse. I am hoping that won't be the case. But I guess we will see.
mallani said
Feb 23, 2013
Hi Zlikster,
SVR is defined as Undet. at 24 weeks after end of treatment. Some believe that 12 weeks after EOT is the 'new' standard but this is not universally accepted. I have a 20% chance of relapse, which usually happens in the first 4-6 weeks after EOT so I'll probably get a VL at 8 weeks.
Sorry, can't help you with Pegintron. Hepatologists here only use Pegasys (Peginterferon alfa-2a) as they think Pegintron (Peginterferon alpha-2b) has more Sx and is slightly less effective. I'm sure plenty will disagree. From reading about the tinnitus, it supposedly resolves after finishing the interferon. Cheers.
Zlikster said
Feb 22, 2013
phew, thats sorted what do you think why did my doctor opted for stronger dosage? (120ug instead 100ug) it's not that i do not trust her, it's just i am curious does increased dosage have anything with stronger reaction of my auditory nerve system.
how many VL checks you have to go thru to say it's SVR for good? 3 months and 12 months post therapy?
i hope your Hb gets up quickly! i bet you need your old energy levels to get back to some long fishing sessions is your cirrhosis reversible now that you achived SVR?
i am indeed on 1000mg or Riba (weight based 66-75kg), as for Pegasys, when i checked options in hospital storage they have only 100 and 120ug, are you sure i am supposed to get 180ug? when i have last checked dosage of pegasys according to weight (66-75kg) it was 96ug, when i asked my doctor why i am getting 120ug instead 100ug, she said for my case it's better to get higher dosage of interferon.
i know you are my voice of reason (not a bully definetly!), but belive me tinnitus will kill me professionally and i would be severely depressed if i would have to change my profession now. In any case it is good to know am i RVR or not (just went to give blood for PCR). Chances are indeed >90% in my case, but as i said i would be willing to risk 10% less of that chance to shorten usage of interferon. I know that might seems unreasonable, especially to people who pulled few years of interferon, but belive me i ain't scared of any sx except perm damage to my hearing and it's tormenting me on daily basis. I can't sleep with just fan on, i have to use ipad as loudspeaker on max and play white noise with my custom made wavs with random gated sinewave in my tinnitus range (i have 2 different ones now). I have to sleep separatley from my gf, since she can't bear with those sounds. I already can't work fully cause of it (have to work at louder leveles and my production/mixdowns are suffering). I do know HCV GT3 ain't that "ez genotype" (i wish i had GT2, but hey), in last 2 years i had mild fatty liver (caused by it most definetly since i am skinny type with no fat deposits, nor do i eat fatty stuff) and i do know that progression of fibrosis>cirrhosis can be rapid, but i want to be optimistic regarding shorter therapies and it's success rates and be positive without dark thoughts of relapse. Anyways, in 2 weeks time i will know am i RVR or not, if i am not, then it's 6 months without any question.
i just got some news (from nonresponder patient) that EU is getting some clinical trials over here (interferon free, pills only) so DAAs might come sooner than i/we think, at least in form of clinical trials...in any case i worked in USA and i do travel a lot, so am not confined to Bosnia. i could even save some money to afford to buy DAAs without insurance in USA when they become available there. I am not scared of the future i belive strongly HCV will go in history same as HAV n HBV went with vaccines...and when i see people like Jim and Vicky that got rid if hcv with, if you could say so, ease i think future is bright
thank you Malcolm for your support with your vast medical knowledge, i wish dostors over here were caring and thoughtfull as you are (some were really mediocre with theri hcv knowledge, tho my present hepatologists seems to be well educated and cares)
best
mallani said
Feb 22, 2013
Hi Zlikster,
That's sorted! I was about to ask you to check that it's Pegasys not Pegintron. Yep, Pegintron is 1.5 mcg/Kg/week so you're fine.
Pegasys is definitely 180 mcg/week, and is not weight adjusted. Cheers.
-- Edited by mallani on Friday 22nd of February 2013 02:06:27 PM
mallani said
Feb 22, 2013
Hi Zlikster,
I don't have my SVR yet! I'll get the VL checked at EOT + 12.
There may be a new protocol for Pegasys for Geno 3. I'm sure your doc is correct, but all the literature talks about is 180 ug/week. I'll just post one link from 2012.
I didn't mean to belittle your tinnitus. I'm sure it must be distressing- easy for me as I've never had it. It will be so easy for you to achieve SVR now that I just wanted you to really understand what's at stake . I'm sure you do so I'll leave you in peace. Cheers.
Link deleted.
-- Edited by mallani on Friday 22nd of February 2013 02:08:45 PM
mallani said
Feb 22, 2013
Hi Zlikster,
Life after treatment continues to improve but it will be a few more weeks before my Hb gets to reasonable levels.
I'm concerned about your dose of Pegasys. This is not weight based, and the recommended dose is 180ug. Why are you only on 120?
The 'old' standard dose of Ribavirin was 800mg/day for 24 weeks. Most think weight based doses are more effective (15.2 mg/kg). You should be on 1000mg/day.
I'm also concerned about the statement 'if shorter duration decreases chances of SVR by 10%.....still go with it'. I don't mean to sound like a bully, but this is your one chance of clearing the virus so don't stuff it up! It may be 10 years before the new DAA's are available in Bosnia, and if you follow standard practice, you have a >90% of SVR now. Tinnitus won't kill you- HCV will! Geno 3 is unpredictable even at your age, with increased risk of cirrhosis, fatty liver and HCC ( compared to Geno1). Progression can be rapid.
I have read the articles promoting shorter treatment duration for RVR's- this is not universally accepted. Treatment is not meant to be a picnic- you've only got 20 weeks to go so................
Zlikster said
Feb 21, 2013
Hi Jo, are u almost there? how many shots left? Yogurt seems to helps ease nausea....
Hi Malcolm, how is post tx life? ;)
Riba dosage was calculated to my weight (66-75kg 1000mg) and at the time i was 72-75kg, now i am @ 68kg...not sure if i go below 66kg will they reduce it? I am not that keen reducing Riba, Interferon is causing me more troubles and i am receiving 120ug/0.5ml instead 100ug/0.5ml according to my initial weight. Doctor said she gave me stronger dosage of Interferon cause she thinks it will have better result in my case. I trust her and i don't wanna be smart arse as for shortening therapy to 16 or 20weeks, if i ain't RVR of course thats out of question, if i am tho, anything that can reduce my tinnitus agony is more than welcomed. Reading all possible publications regarding RVR i think i am in a good position regarding base viral load (25k UI/l), age, fibrosis and genotype. If it is a 10% less chance of SVR if i do 16weeks, i think i would take that chance. We will see, time will come for that decision. Important milestones are UND @ 4w and 12w and i am focused now on acheiving that. Can't wait for first PCR results...i am very optimistic ;)
thanks for support! ;)
mallani said
Feb 21, 2013
Hi Zlikster,
Don't be too keen to reduce your Interferon and Ribavirin dose. You are not on triple therapy and those two drugs are doing all the work!
The doses have been carefully calculated over many years to obtain the best chance of SVR. RVR or not, I would be very careful about choosing to reduce treatment time to below 24 weeks.
I am sorry about the tinnitus and it may be aggravated by Interferon. Some have to struggle through treatment, others don't. The outcome is worth it.
JoAnneh said
Feb 21, 2013
Crackers helped settle my stomach. Hopefully your body will adjust to medicine Better very soon!
Zlikster said
Feb 21, 2013
Quick update of my treatment progress
sx
- tinnitus still there and making me problems with sleep and my work (intereferon caused 100%), trying to find a good OTR doctor for consultation, but no luck. This is still my top sx thats been really bothering me, really scared of perm damage to my auditory nerve system - WBC went down a lot 2 time belowe limit (intereferon?) - Hg and RBC tad below lower limit (Riba?) - i feel tired constantly, getting 3 naps per day, can't ski anymore ;/ - Interferon sx on the shot day can be easily avoided by oversleeping it , but residual sx are now longer (from Fri to Wed) - cough (Riba or Interferon) is now constant, not severe tho - nausea is now daily (combined with cough makes me wanna vomit) - weight loss, getting really serious dropped 3-4kg in 4 weeks (was already skinny), i hope they will lower dosage of Interferon and Ribavirina if i drop 2 more kg (i am then in different weight zone) - taste loss (Interferon), everything tastes like cardboard to me
doing PCR tomorrow and in 2 weeks time i will know am i RVR. On 14th week (after 2nd PCR on 3rd month) i will know will i be able to cut therapy to 16-20week. My doctor said she will sign a PCR prescription so i don't have to pay for it!
i really envy people with no sx and i admire people who had went on interferon based therapy again and again...
Well I am on Pegintron and ribasphere, so not our injections are the same and I think the pills are very similar. And I wouldn't say I haven't had any side effects. Just nothing awful. The first night, I did have a fever. There was one that I got sick. But for the past few nothing really. I had my injection last night and don't feel any different than a day ago.
The Ribaviran causes me side effects. I feel 'dizzy' (off balance) and I am thirsty and tired. Those are the main symptoms I have had. The dizzy lasts about 4 hours after taking ribaviran. So basically I run errands in the morning before I take my pills at 11:00. Then I take a nap in the afternoon to sleep through the 'dizzy' and then I take the ribaviran again at 11:00 pm and sleep through the dizzy for that.
But the tired is always there. We have a two story house and I find myself resting a bit after carrying up laundry to put away. And I have water with me almost all the time because I am usually thirsty.
I haven't had any pain, no headaches, and only got sick to my stomach once (other than that, I have no problem eating....tonight is Olive Garden night for me :) ).
Hope things go well for you. As I said.....having the luxary of being at home has been wonderful. I have no idea how I would be handling all of this if I had to be at a job 8 hours a day.
Oh and my liver is still in good shape. I had to switch doctors because the one I was seeing did not want to treat me since my liver still looks good and she said there was no rush.....well I didn't see things like that. I want to take care of it now while I can stay home and take care of myself and just get it over with so that I can hopefully go back to work again after this and go on with my life. So after 4 months of her delaying and her telling me there was no rush and putting off my treatment, I switched doctors and was able to start treatment in just 3 weeks and am on my way to kicking this thing. I don't see the point of waiting until you have liver problems to treat. Maybe I just don't understand it well enough, but I would prefer to get rid of this virus before it causes damage. So anyway...to answer your question. Not damage to my liver yet. Hopefully it will stay that way.
(......sort of makes me wonder......do you think I have less side effects because my liver isn't damaged? Maybe that helps process the medicine better without so many side effects? just a thought...I really have no idea).
Hi Malcolm, keeping fingers crossed for your UND @ week 8
yeah, i saw few articles how PegIntron is a tad less effective than Roche's Pegasys and also few people on this forum mentioned that they had more severe sx with PegIntron...then again DJ doesn't have any sx with it 
Hi Zlikster,
SVR is defined as Undet. at 24 weeks after end of treatment. Some believe that 12 weeks after EOT is the 'new' standard but this is not universally accepted. I have a 20% chance of relapse, which usually happens in the first 4-6 weeks after EOT so I'll probably get a VL at 8 weeks.
Sorry, can't help you with Pegintron. Hepatologists here only use Pegasys (Peginterferon alfa-2a) as they think Pegintron (Peginterferon alpha-2b) has more Sx and is slightly less effective. I'm sure plenty will disagree. From reading about the tinnitus, it supposedly resolves after finishing the interferon. Cheers.
how many VL checks you have to go thru to say it's SVR for good? 3 months and 12 months post therapy?
best
it's Pegintron, not Pegasys, and here it says:
61-75kg - 96ug
Sorry bad link malcom.
i am indeed on 1000mg or Riba (weight based 66-75kg), as for Pegasys, when i checked options in hospital storage they have only 100 and 120ug, are you sure i am supposed to get 180ug? when i have last checked dosage of pegasys according to weight (66-75kg) it was 96ug, when i asked my doctor why i am getting 120ug instead 100ug, she said for my case it's better to get higher dosage of interferon.
i belive strongly HCV will go in history same as HAV n HBV went with vaccines...and when i see people like Jim and Vicky that got rid if hcv with, if you could say so, ease i think future is bright 
(some were really mediocre with theri hcv knowledge, tho my present hepatologists seems to be well educated and cares)
i know you are my voice of reason (not a bully definetly!), but belive me tinnitus will kill me professionally and i would be severely depressed if i would have to change my profession now. In any case it is good to know am i RVR or not (just went to give blood for PCR). Chances are indeed >90% in my case, but as i said i would be willing to risk 10% less of that chance to shorten usage of interferon. I know that might seems unreasonable, especially to people who pulled few years of interferon, but belive me i ain't scared of any sx except perm damage to my hearing and it's tormenting me on daily basis. I can't sleep with just fan on, i have to use ipad as loudspeaker on max and play white noise with my custom made wavs with random gated sinewave in my tinnitus range (i have 2 different ones now). I have to sleep separatley from my gf, since she can't bear with those sounds. I already can't work fully cause of it (have to work at louder leveles and my production/mixdowns are suffering). I do know HCV GT3 ain't that "ez genotype" (i wish i had GT2, but hey), in last 2 years i had mild fatty liver (caused by it most definetly since i am skinny type with no fat deposits, nor do i eat fatty stuff) and i do know that progression of fibrosis>cirrhosis can be rapid, but i want to be optimistic regarding shorter therapies and it's success rates and be positive without dark thoughts of relapse. Anyways, in 2 weeks time i will know am i RVR or not, if i am not, then it's 6 months without any question.
i just got some news (from nonresponder patient) that EU is getting some clinical trials over here (interferon free, pills only) so DAAs might come sooner than i/we think, at least in form of clinical trials...in any case i worked in USA and i do travel a lot, so am not confined to Bosnia. i could even save some money to afford to buy DAAs without insurance in USA when they become available there. I am not scared of the future
thank you Malcolm for your support with your vast medical knowledge, i wish dostors over here were caring and thoughtfull as you are
best
Hi Zlikster,
That's sorted! I was about to ask you to check that it's Pegasys not Pegintron. Yep, Pegintron is 1.5 mcg/Kg/week so you're fine.
Pegasys is definitely 180 mcg/week, and is not weight adjusted. Cheers.
-- Edited by mallani on Friday 22nd of February 2013 02:06:27 PM
Hi Zlikster,
I don't have my SVR yet! I'll get the VL checked at EOT + 12.
There may be a new protocol for Pegasys for Geno 3. I'm sure your doc is correct, but all the literature talks about is 180 ug/week. I'll just post one link from 2012.
I didn't mean to belittle your tinnitus. I'm sure it must be distressing- easy for me as I've never had it. It will be so easy for you to achieve SVR now that I just wanted you to really understand what's at stake . I'm sure you do so I'll leave you in peace. Cheers.
Link deleted.
-- Edited by mallani on Friday 22nd of February 2013 02:08:45 PM
Hi Zlikster,
Life after treatment continues to improve but it will be a few more weeks before my Hb gets to reasonable levels.
I'm concerned about your dose of Pegasys. This is not weight based, and the recommended dose is 180ug. Why are you only on 120?
The 'old' standard dose of Ribavirin was 800mg/day for 24 weeks. Most think weight based doses are more effective (15.2 mg/kg). You should be on 1000mg/day.
I'm also concerned about the statement 'if shorter duration decreases chances of SVR by 10%.....still go with it'. I don't mean to sound like a bully, but this is your one chance of clearing the virus so don't stuff it up! It may be 10 years before the new DAA's are available in Bosnia, and if you follow standard practice, you have a >90% of SVR now. Tinnitus won't kill you- HCV will! Geno 3 is unpredictable even at your age, with increased risk of cirrhosis, fatty liver and HCC ( compared to Geno1). Progression can be rapid.
I have read the articles promoting shorter treatment duration for RVR's- this is not universally accepted. Treatment is not meant to be a picnic- you've only got 20 weeks to go so................
Hi Malcolm, how is post tx life? ;)
Riba dosage was calculated to my weight (66-75kg 1000mg) and at the time i was 72-75kg, now i am @ 68kg...not sure if i go below 66kg will they reduce it? I am not that keen reducing Riba, Interferon is causing me more troubles and i am receiving 120ug/0.5ml instead 100ug/0.5ml according to my initial weight. Doctor said she gave me stronger dosage of Interferon cause she thinks it will have better result in my case. I trust her and i don't wanna be smart arse
thanks for support! ;)
Hi Zlikster,
Don't be too keen to reduce your Interferon and Ribavirin dose. You are not on triple therapy and those two drugs are doing all the work!
The doses have been carefully calculated over many years to obtain the best chance of SVR. RVR or not, I would be very careful about choosing to reduce treatment time to below 24 weeks.
I am sorry about the tinnitus and it may be aggravated by Interferon. Some have to struggle through treatment, others don't. The outcome is worth it.
Hopefully your body will adjust to medicine
Better very soon!
Quick update of my treatment progress
, but residual sx are now longer (from Fri to Wed)
and i admire people who had went on interferon based therapy again and again...
sx
- tinnitus still there and making me problems with sleep and my work (intereferon caused 100%), trying to find a good OTR doctor for consultation, but no luck. This is still my top sx thats been really bothering me, really scared of perm damage to my auditory nerve system
- WBC went down a lot 2 time belowe limit (intereferon?)
- Hg and RBC tad below lower limit (Riba?)
- i feel tired constantly, getting 3 naps per day, can't ski anymore ;/
- Interferon sx on the shot day can be easily avoided by oversleeping it
- cough (Riba or Interferon) is now constant, not severe tho
- nausea is now daily (combined with cough makes me wanna vomit)
- weight loss, getting really serious dropped 3-4kg in 4 weeks (was already skinny), i hope they will lower dosage of Interferon and Ribavirina if i drop 2 more kg (i am then in different weight zone)
- taste loss (Interferon), everything tastes like cardboard to me
doing PCR tomorrow and in 2 weeks time i will know am i RVR. On 14th week (after 2nd PCR on 3rd month) i will know will i be able to cut therapy to 16-20week. My doctor said she will sign a PCR prescription so i don't have to pay for it!
i really envy people with no sx
keep fighting!