Aa
Serious Question from Mikkimoe
May I borrow your brain power and research expertise....Rational decisions are getting difficult these days.
As most of you kind of old timers know I have had a pretty tough go at things (week 11 of 24 weeks, 2B). I went into this very strong minded but weak bodied. Having Severe RA to begin with - that was relatively under control....but no longer is. The dreaded autoimmune syndrome has hit me hard. Total lock ups...pain in up to 30% of my joints at once. Pain scale off the charts about two to three days per week. Pretty much totally bed ridden. Docs are concerned and have backed meds down to almost 1/2 and have added anti-inflams, more steroids, mega pain meds etc. Joints are deforming in front of my eyes....
.....so here's the question...
In your vast experience what is the shortest time frame of TX that anyone achieved SVR as a 2B that was UND at 3.5 weeks? If I make it to 12 weeks is there anyway I will stay UND? I am going to give it my all to hang in there to week 16 but if I can't what are my odds? I use to just start researching till I figured it out...but it took me all night just to write this...fingers don't work...let alone brains.
Thanks much,
Mikkimoe
As most of you kind of old timers know I have had a pretty tough go at things (week 11 of 24 weeks, 2B). I went into this very strong minded but weak bodied. Having Severe RA to begin with - that was relatively under control....but no longer is. The dreaded autoimmune syndrome has hit me hard. Total lock ups...pain in up to 30% of my joints at once. Pain scale off the charts about two to three days per week. Pretty much totally bed ridden. Docs are concerned and have backed meds down to almost 1/2 and have added anti-inflams, more steroids, mega pain meds etc. Joints are deforming in front of my eyes....
.....so here's the question...
In your vast experience what is the shortest time frame of TX that anyone achieved SVR as a 2B that was UND at 3.5 weeks? If I make it to 12 weeks is there anyway I will stay UND? I am going to give it my all to hang in there to week 16 but if I can't what are my odds? I use to just start researching till I figured it out...but it took me all night just to write this...fingers don't work...let alone brains.
Thanks much,
Mikkimoe
Mikki,
I'm so sorry that you're feeling so bad. Hopefully, once you finish tx and achieve SVR, your good health will be restored. Anyway, I'm another 2b who had a truncated treatment - 12 weeks of riba and an additional week of INF alone - and was pronounced SVR after that excruciating 6 month wait. But with an UND at 3-1/2 weeks, you're probably going to win at this game. I'm praying for you.
Love,
pigeon
I'm so sorry that you're feeling so bad. Hopefully, once you finish tx and achieve SVR, your good health will be restored. Anyway, I'm another 2b who had a truncated treatment - 12 weeks of riba and an additional week of INF alone - and was pronounced SVR after that excruciating 6 month wait. But with an UND at 3-1/2 weeks, you're probably going to win at this game. I'm praying for you.
Love,
pigeon
Hi LL. I've not posted in a while, but you perked my interest regarding you doc saying
"My Doc said 8 weeks tx is around the corner for us 2b-ers!'
I have minimal damage 01 / 01, 2b and very few and infrequent sx. I have been sitting the fence of decision so long that I've now put up a mailbox and install a/c. The news that I've search for is the trial data seems to be geared to reducing the tx time for GT 1 and increasing the SVR % (which is most excellent).
None-the-less, I have wondered what the newest drugs coming out would mean for us 2b folks and if waiting shouldn't be my choice - which I've been leaning toward since I first read the sx and potentially lasting effects of SOC.
I appreciate your later post to remind us that the current tx is 24 weeks. I just hate sounding like a whiney baby in the footsteps of those who face a much more dire prescription. My GI doc is amazed that I won't commit since I'm easy-breezy to treat, healthy, and still young at pushing 50 :(
The gist is that I'm so overly worried about my job (which I must and want to keep) that the possibilty of being the most unlucky of folks and having every sx available keeps me pondering the 'do I do' or 'do I wait' on a a daily basis.
Can you point me in the direction to see the forward-looking data on what's in the pipeline for 2bs or pass any info, personal perspectives, or just any stuff anyone would care to share.
p.s. Mikkimoe - you are in my prayers... I'm a fan that has been rooting for you from my closet for some time now.
~..~ vlm
"My Doc said 8 weeks tx is around the corner for us 2b-ers!'
I have minimal damage 01 / 01, 2b and very few and infrequent sx. I have been sitting the fence of decision so long that I've now put up a mailbox and install a/c. The news that I've search for is the trial data seems to be geared to reducing the tx time for GT 1 and increasing the SVR % (which is most excellent).
None-the-less, I have wondered what the newest drugs coming out would mean for us 2b folks and if waiting shouldn't be my choice - which I've been leaning toward since I first read the sx and potentially lasting effects of SOC.
I appreciate your later post to remind us that the current tx is 24 weeks. I just hate sounding like a whiney baby in the footsteps of those who face a much more dire prescription. My GI doc is amazed that I won't commit since I'm easy-breezy to treat, healthy, and still young at pushing 50 :(
The gist is that I'm so overly worried about my job (which I must and want to keep) that the possibilty of being the most unlucky of folks and having every sx available keeps me pondering the 'do I do' or 'do I wait' on a a daily basis.
Can you point me in the direction to see the forward-looking data on what's in the pipeline for 2bs or pass any info, personal perspectives, or just any stuff anyone would care to share.
p.s. Mikkimoe - you are in my prayers... I'm a fan that has been rooting for you from my closet for some time now.
~..~ vlm
Forgot a thought:)
I think your at 600Riba, 135 peg...right?
Can you discuss with your Dr. reducing the Peg again and I also have studies stating even 400mg Riba (WITH RVR at 4 weeks) is also ok. Perhaps you can reduce again to get a few more weeks in? Just another suggestion.
NOTE! I want to add for all Geno 2, 3's.....that while I had to reduce and we do discuss it when it seems an absolute must...please don't read these threads and get the mind set of 'well I can reduce too' due to the 'normal' sides on tx. At this point in SOC it is 24 weeks, full dose's that 'cure' us. Reducing is not suggested by me in any way unless serious circumstances. Until new tx's are out, please do as your Dr. says! I have had many Geno 2's PM me on this and while sometimes it is done to keep us tx-ing longer or to reduce serious sides (while they all seem serious, you get my drift there), I don't want to 'push' reducing as a standard.
Feel better Mikkimoe!
LL
I think your at 600Riba, 135 peg...right?
Can you discuss with your Dr. reducing the Peg again and I also have studies stating even 400mg Riba (WITH RVR at 4 weeks) is also ok. Perhaps you can reduce again to get a few more weeks in? Just another suggestion.
NOTE! I want to add for all Geno 2, 3's.....that while I had to reduce and we do discuss it when it seems an absolute must...please don't read these threads and get the mind set of 'well I can reduce too' due to the 'normal' sides on tx. At this point in SOC it is 24 weeks, full dose's that 'cure' us. Reducing is not suggested by me in any way unless serious circumstances. Until new tx's are out, please do as your Dr. says! I have had many Geno 2's PM me on this and while sometimes it is done to keep us tx-ing longer or to reduce serious sides (while they all seem serious, you get my drift there), I don't want to 'push' reducing as a standard.
Feel better Mikkimoe!
LL
Hi girl, I know you are really struggling here :(
I posted already (other one) on how I had to reduce twice and I (don't think!) I have RA and was bed ridden a lot and serious body pain thru out tx soooo....my heart goes out to you in the pain you must be going thru. Week 6 I was reduced to 600 Riba, 135 peg, by week 15 I was at 600 Riba, only 90 Peg for the remaining tx and just got my 3 mths. UND last week. I have read MANY studies that 2b's do very well at even 12 weeks, tho better going to 16 but you really do have to think of how much damage this will leave you. My Doc said 8 weeks tx is around the corner for us 2b-ers! So IF, God forbid, you don't clear, it won't be long before there is other options for you.
I am also worried about you, with all you have going on and how much I hurt on tx without all that going on!
While I want to say 'keep going' to 16, in your case it may not be the best choice. Missy , others mentioned it can cause permanant damage, not worth it at this point.
I'm sorry you have to decide this and going thru all this. I'll be hoping, praying, wishing for you to clear no matter when you stop.
Keep us posted.
CS .....glad to see you in this thread, you were a big help to me thru my tx and studies you sent.
LL
I posted already (other one) on how I had to reduce twice and I (don't think!) I have RA and was bed ridden a lot and serious body pain thru out tx soooo....my heart goes out to you in the pain you must be going thru. Week 6 I was reduced to 600 Riba, 135 peg, by week 15 I was at 600 Riba, only 90 Peg for the remaining tx and just got my 3 mths. UND last week. I have read MANY studies that 2b's do very well at even 12 weeks, tho better going to 16 but you really do have to think of how much damage this will leave you. My Doc said 8 weeks tx is around the corner for us 2b-ers! So IF, God forbid, you don't clear, it won't be long before there is other options for you.
I am also worried about you, with all you have going on and how much I hurt on tx without all that going on!
While I want to say 'keep going' to 16, in your case it may not be the best choice. Missy , others mentioned it can cause permanant damage, not worth it at this point.
I'm sorry you have to decide this and going thru all this. I'll be hoping, praying, wishing for you to clear no matter when you stop.
Keep us posted.
CS .....glad to see you in this thread, you were a big help to me thru my tx and studies you sent.
LL
This paper from 2007 may answer some of your questions..
Chronic Hepatitis C
Strategies for Optimizing Current Treatment and
the Potential Impact of Emerging Therapies
http://www.medicalcrossfire.com/onlineLearning/cme/2006/06-LC-27-M-100.pdf
...The fourth study, the ACCELERATE trial, was coauthored by Dr. Shiffman.15 “It is
the largest of the four studies and included 1,469 patients with genotypes 2 and 3,” observed
Dr. Di Bisceglie. The patients were randomized to receive PEG-IFN alfa-2a plus
ribavirin for either 16 or 24 weeks. “This study was large enough to allow us to compare
responses in genotype 2 and genotype 3,” commented Dr. Di Bisceglie. Among patients with genotype 2, the SVR was 65% at 16 weeks and 82% at 24 weeks. Among patients with genotype 3, the SVR was 65% at 16 weeks and 71% at 24 weeks. Remarked Dr.Di Bisceglie, “Treatment response rates were consistently lower with 16 weeks of treatment.”
Having reviewed the data from these four key trials, Dr. Di Bisceglie drew the following
conclusions regarding the treatment of patients with genotypes 2 and 3: “First, 800 mg
of ribavirin a day is sufficient. Second, there are conflicting data on SVR rates when the
treatment duration is less than 24 weeks. Finally, some of the variables that may affect
response include the difference between genotype 2 versus genotype 3; the presence of
hepatic fibrosis or cirrhosis; and viral load.”
Hope you feel better soon.
Hector
Chronic Hepatitis C
Strategies for Optimizing Current Treatment and
the Potential Impact of Emerging Therapies
http://www.medicalcrossfire.com/onlineLearning/cme/2006/06-LC-27-M-100.pdf
...The fourth study, the ACCELERATE trial, was coauthored by Dr. Shiffman.15 “It is
the largest of the four studies and included 1,469 patients with genotypes 2 and 3,” observed
Dr. Di Bisceglie. The patients were randomized to receive PEG-IFN alfa-2a plus
ribavirin for either 16 or 24 weeks. “This study was large enough to allow us to compare
responses in genotype 2 and genotype 3,” commented Dr. Di Bisceglie. Among patients with genotype 2, the SVR was 65% at 16 weeks and 82% at 24 weeks. Among patients with genotype 3, the SVR was 65% at 16 weeks and 71% at 24 weeks. Remarked Dr.Di Bisceglie, “Treatment response rates were consistently lower with 16 weeks of treatment.”
Having reviewed the data from these four key trials, Dr. Di Bisceglie drew the following
conclusions regarding the treatment of patients with genotypes 2 and 3: “First, 800 mg
of ribavirin a day is sufficient. Second, there are conflicting data on SVR rates when the
treatment duration is less than 24 weeks. Finally, some of the variables that may affect
response include the difference between genotype 2 versus genotype 3; the presence of
hepatic fibrosis or cirrhosis; and viral load.”
Hope you feel better soon.
Hector
From what remember about the short tx studies, the 12 week one was done with PegIntron and the 16 with pegasys. I don't know whether pegasys would have done any worse that pegintron, had it been researched for 12 weeks tx.
I don't think they used ultra sensitive PCRs for the 4 week check, so if you had a TMA, for example, that works to your favor.
You have no reason to put yourself through anymore, especially if you don't have severe damage.
I don't think they used ultra sensitive PCRs for the 4 week check, so if you had a TMA, for example, that works to your favor.
You have no reason to put yourself through anymore, especially if you don't have severe damage.
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
