Aa
results of biopsy
mild chronic hepatitis with bridging fibrosis and early cirrhosis
may represent hepatitis c.
furthter along than i'd hoped.
looks like late stage 3 early four right?
may represent hepatitis c.
furthter along than i'd hoped.
looks like late stage 3 early four right?
Right.
If you are eligible for treatment, you should seriously consider it.
I have a lot of information compiled on the website you might want to read through.
My opinion is that Pegasys is the better of the two treatment options, but that guarantees nothing in terms of results or side effects. I assume since you have been reading this board for three years that you probably know this already.
Even if you do have an SVR, the chances of your liver being cured of the damage already suffered is remote. In the best possible scenario you will have improved the architecture of your liver and be able to forestall any further damage. You cannot heal a wound and pick at it at the same time. Prevention of more scarring is the name of the game and you have no wiggle room.
Anti-depressants have side effects. And there are recent FDA warnings about them. I cannot understand the theory of prophylactic use of anti-depressants without any evidence of their need. The psychiatrists and neurologists I have consulted on this do not support this practice. Discuss your doctor'[s policy on this ASAP.
You may not have serious side effects at all. There is no way to tell in advance.
Make sure your finances and your homelife are all in order. This can put a strain on the best marriages. Childrearing during treatment can be very hard, so prepare those around you for a time of chipping in with more than their share of the chores and for understanding that you are not going to be yourself for a whole year. This is serious. Do not go into this treatment without getting your support system on-side and clearly understanding that this is going to be hard on them, too.
Likewise, form a plan around your worklife and make sure you know in advance what you are entitled to, what your short term disability is like and, if you have the option, sign up for the extra (AAFLC) insurance that pays your salary if you cannot work for a period of time. Get everything assembled in one file or drawer just in case you need it. Treatment is stressful enough without the addition of fighting with people for what you atre entitled to.
Lastly, but not least, make sure you have a conversation with your provider BEFORE beginning treatment regarding what you can expect in terms of support for side effects (just in case) Some providers think that an anti-depressant is enough. And, for some (those that need them, that is) it is. For many patients, it isn't enough. Make sure your provider is on board with pain medications, sleep medications and any other medication you might need during this year. Also make sure in advance that they WILL co-operate with any disability forms, letters or plans as required.
Big red flag: "you won't need any of that" or "we'll cross that bridge when we come to it." Do not allow them to minimize the potential for having side effects. Back them up right there and make sure you have an understanding and IT IS WRITTEN CLEARLY IN YOUR CHART. These situations always seem to occur when doc is on vacation! The office nurse can be your best friend or your worst enemy. Know in advance which one she is.
I have stressed the things you will not hear from very often. There is no question in my mind that, barrring anything you have not told us, you should treat. Make sure you have no condition that will complicate things for you, and that you read through the manufacturer's material found on their website.
Prepare for the worst, then expect the best. We will be here if you need us all the way through.
thanbey
<a href="http://www.hcop.org">Hepatitis C Outreach Project</a>
If you are eligible for treatment, you should seriously consider it.
I have a lot of information compiled on the website you might want to read through.
My opinion is that Pegasys is the better of the two treatment options, but that guarantees nothing in terms of results or side effects. I assume since you have been reading this board for three years that you probably know this already.
Even if you do have an SVR, the chances of your liver being cured of the damage already suffered is remote. In the best possible scenario you will have improved the architecture of your liver and be able to forestall any further damage. You cannot heal a wound and pick at it at the same time. Prevention of more scarring is the name of the game and you have no wiggle room.
Anti-depressants have side effects. And there are recent FDA warnings about them. I cannot understand the theory of prophylactic use of anti-depressants without any evidence of their need. The psychiatrists and neurologists I have consulted on this do not support this practice. Discuss your doctor'[s policy on this ASAP.
You may not have serious side effects at all. There is no way to tell in advance.
Make sure your finances and your homelife are all in order. This can put a strain on the best marriages. Childrearing during treatment can be very hard, so prepare those around you for a time of chipping in with more than their share of the chores and for understanding that you are not going to be yourself for a whole year. This is serious. Do not go into this treatment without getting your support system on-side and clearly understanding that this is going to be hard on them, too.
Likewise, form a plan around your worklife and make sure you know in advance what you are entitled to, what your short term disability is like and, if you have the option, sign up for the extra (AAFLC) insurance that pays your salary if you cannot work for a period of time. Get everything assembled in one file or drawer just in case you need it. Treatment is stressful enough without the addition of fighting with people for what you atre entitled to.
Lastly, but not least, make sure you have a conversation with your provider BEFORE beginning treatment regarding what you can expect in terms of support for side effects (just in case) Some providers think that an anti-depressant is enough. And, for some (those that need them, that is) it is. For many patients, it isn't enough. Make sure your provider is on board with pain medications, sleep medications and any other medication you might need during this year. Also make sure in advance that they WILL co-operate with any disability forms, letters or plans as required.
Big red flag: "you won't need any of that" or "we'll cross that bridge when we come to it." Do not allow them to minimize the potential for having side effects. Back them up right there and make sure you have an understanding and IT IS WRITTEN CLEARLY IN YOUR CHART. These situations always seem to occur when doc is on vacation! The office nurse can be your best friend or your worst enemy. Know in advance which one she is.
I have stressed the things you will not hear from very often. There is no question in my mind that, barrring anything you have not told us, you should treat. Make sure you have no condition that will complicate things for you, and that you read through the manufacturer's material found on their website.
Prepare for the worst, then expect the best. We will be here if you need us all the way through.
thanbey
<a href="http://www.hcop.org">Hepatitis C Outreach Project</a>
My brother had about the same results from his BX. The Dr called it stage 3 fibrosis with some cirrhosis. I asked my Dr how they could lable him stage 3 while haveing some cirrhosis.
He said it was the label, that they like to stay away from labeling someone cirrhotic until that person is clearly cirrhotic.
I hope this made sense,
God Bless
TonyZ
Wow! I wish I had read all that before my husband started tx. His doctor is well established where we live but is definitely on the side of "it will be fine, just give it a few days," when my husband has gone to him with any side effects.
Thankfully his G.P. is understanding and has helped with AD's and now with Ambien which I learned about from this site (thank you all). The sleeplessness was making him into a lunatic and his hep doctor kept saying he didn't want to give him anything besides the tx.
Good luck to all,
Lori (doting partner of Nik the dragon slayer)
Thankfully his G.P. is understanding and has helped with AD's and now with Ambien which I learned about from this site (thank you all). The sleeplessness was making him into a lunatic and his hep doctor kept saying he didn't want to give him anything besides the tx.
Good luck to all,
Lori (doting partner of Nik the dragon slayer)
I'm sorry that the results were more then you expected. I know last week that you had so many concerns and was going back and forth on what to do. Looks like tx is in order for you at this point and we are here for you! Good Luck!
I also am sorry to hear these results. Thanbey had alot of good suggestions. Stay in touch with us and let us know how you are doing. Remmember that you are not alone. There are so many of us out here willing to help you in any way we can. Be positive and GO FOR IT!!! I will be praying that you beat this DRAGON. take care, kim
Sorry to hear of the results, but this can still be beaten.
My husband had bridging fibrosis and mild cirrhosis, and did eventually clear and is SVR at this point, almost 2 years after completing his last treatment. (He was a 3a, and was tx'd 2 separate times for a year each time).
Hasn't had another biopsy yet, will have one next year so we will find out if there has been improvement or not.
Good luck, and keep posting.
My husband had bridging fibrosis and mild cirrhosis, and did eventually clear and is SVR at this point, almost 2 years after completing his last treatment. (He was a 3a, and was tx'd 2 separate times for a year each time).
Hasn't had another biopsy yet, will have one next year so we will find out if there has been improvement or not.
Good luck, and keep posting.
I wish I had read your reply before I started tx. My Dr does not do bx before starting you on tx. I have no idea what state my liver is in. After my inital bloodwork, I was not "asked" if I wanted to do tx, I was given a RX, video tape, tx kit and a standing order for blood work.(oh, and my Lexapro was increased cause I appeared more depressed then before) My first 6 weeks were fine (considering), but now I live holed up in my home wondering how I can stay away from people and wondering how much longer I can live with these sides. After complaining to my drs office about all my sides, they reminded me of the "stay in charge program" that I should be calling. Oh and I'm supposed to call my GP for other drugs, since he only treats the liver. (They have that posted on the wall of their office but of corse my GP won't treat me cause I'm under the care of a GI Dr) My nerves are shot and sometimes I feel like I could lose it. Financially I'm down to my last few thousand dollars and wonder when I can get back to work....I'm only 12/52 this weekend so I have no idea yet if I'm a responder. I ask myself everyday why I started TX. I've gotten to where I hate when the phone/doorbell rings, or when I have to get my blood done. Because of all the bickering I quit reading this forum too. But now I NEED to do something - I'm not gonna make it 52 weeks. Has anyone just quit? My Dr says it would be AMA. So what? Do I take a chance of losing my insurance if I quit AMA? I need to get back to work to stay sane. Any help you can give me Theresa is appreciated. KK
My hepatologist will not treat any other sides not related to low bc. I go to my GP for pain meds(vicoprofen).
We need to find a physician that is not afraid of the DEA, someone who will take our pain seriously and assist us in this struggle.
If our current one won't listen, search for one who will. Getting to the end of this battle once started, requires cooperation from those monitoring us.
We need to find a physician that is not afraid of the DEA, someone who will take our pain seriously and assist us in this struggle.
If our current one won't listen, search for one who will. Getting to the end of this battle once started, requires cooperation from those monitoring us.
The first thing that needs to happen is that you need to have your two physicians communicate with one another about who is doing what.
Do that today. These roles need to be cleared up and NOW. A letter from your GI doctor to your PCP, or a copy of the notice on his office wall has to get to your PCP immediately. If you have to take a photo of it, do it.
Then you need to sit down with your PCP and come up with a plan. Or, you may need another PCP to work with you. Weird as it sounds, the GI doctor may be able to recommend someone who does work with sides well.
No insurance carrier will drop you if you do not continue therapy. If you do not realize a 2 log drop in viral load or an undetectable PCR at 12 weeks, discontinuing is recommended by one the manufacturers. Some insurance companies even insist on it and you have to fight to stay on treatment to achieve a potential histological improvement.
Since you have no biopsy report to go on, your choices are to transfer to another GI doctor and get one or stay with your present provider. The decision to discontinue treatment should be made on the basis of a biopsy report, your ability to tolerate the medications and the 12 week results. You are at a distinct disadvantage here.
The "Be in Charge Program" is no substitute for medical help for sides. That's the dumbest thing I ever heard.
You are in a tough spot. Summon up what strength you can to get on track with a provider who is going to work with you.
And, if you simply cannot tolerate the treatment, or just don't want to, you will live to fight another day.
Do what you need to do to be sane, whole, happy and productive. It may be possible to achieve that and stay on treatment. I don't know. That is up to you to decide. First you need a provider in your corner to help you make that decision based on your medical staus.
I hope this helps,
thanbey
PS stick around!
Do that today. These roles need to be cleared up and NOW. A letter from your GI doctor to your PCP, or a copy of the notice on his office wall has to get to your PCP immediately. If you have to take a photo of it, do it.
Then you need to sit down with your PCP and come up with a plan. Or, you may need another PCP to work with you. Weird as it sounds, the GI doctor may be able to recommend someone who does work with sides well.
No insurance carrier will drop you if you do not continue therapy. If you do not realize a 2 log drop in viral load or an undetectable PCR at 12 weeks, discontinuing is recommended by one the manufacturers. Some insurance companies even insist on it and you have to fight to stay on treatment to achieve a potential histological improvement.
Since you have no biopsy report to go on, your choices are to transfer to another GI doctor and get one or stay with your present provider. The decision to discontinue treatment should be made on the basis of a biopsy report, your ability to tolerate the medications and the 12 week results. You are at a distinct disadvantage here.
The "Be in Charge Program" is no substitute for medical help for sides. That's the dumbest thing I ever heard.
You are in a tough spot. Summon up what strength you can to get on track with a provider who is going to work with you.
And, if you simply cannot tolerate the treatment, or just don't want to, you will live to fight another day.
Do what you need to do to be sane, whole, happy and productive. It may be possible to achieve that and stay on treatment. I don't know. That is up to you to decide. First you need a provider in your corner to help you make that decision based on your medical staus.
I hope this helps,
thanbey
PS stick around!
yeah
dx sealed it.
and i've got chirrohis.
early is what the dx says but that still can't be good.
plan on starting tx asap.
if the tx works and halts progress, i ponder what the liver function will be from then on?
even with 'early' cir. , in your studies, could my prognosis be any good?
dx sealed it.
and i've got chirrohis.
early is what the dx says but that still can't be good.
plan on starting tx asap.
if the tx works and halts progress, i ponder what the liver function will be from then on?
even with 'early' cir. , in your studies, could my prognosis be any good?
well, it sounds like were saying that if there is chirrosis it never stops progressing no matter what.
am i wrong here?
am i wrong here?
walkinghorse-my gp said whoever gives me a medicine that causes side effects should be the one who deals with those side effects. when my gi tried to get out of dealing with the sides i told him what my gp said and he could'nt argue with that. so he now does give me the stuff for my sides...I think they're all afraid to give sleeping pills and pain pills...
on the note of pain pills talk to your dr. about "tramadol/ULTRAM",it works great for pain from tx and is non habit forming and concidered safe, by both my gi and my gp. they both say,"it's a wonderful medicine"... that's rare to hear for a pain pill.
i hope and pray you can stay on the tx. IF YOU DO NOT CLEAR OR GO OFF EARLY IT COULD BE WORSE FOR YOU DOWN THE ROAD...please keep comming here and try not to be bothered by occasional bickering. usually the bickering stops in a day or two. just skip those posts...
you need a support group... if not here then somewhere to help you get through this treatment. there are also other organizations that have message boards and support for the days when we are crabby...
CUTEUS- you may want to reconcider the opioid/vicodin type meds. i read that they can interfer with interferon and cause viral replication like alcohol,moraphine... read this article...
http://www.hepatitisneighborhood.com/content/in_the_news/archive_1527.aspx
on the note of pain pills talk to your dr. about "tramadol/ULTRAM",it works great for pain from tx and is non habit forming and concidered safe, by both my gi and my gp. they both say,"it's a wonderful medicine"... that's rare to hear for a pain pill.
i hope and pray you can stay on the tx. IF YOU DO NOT CLEAR OR GO OFF EARLY IT COULD BE WORSE FOR YOU DOWN THE ROAD...please keep comming here and try not to be bothered by occasional bickering. usually the bickering stops in a day or two. just skip those posts...
you need a support group... if not here then somewhere to help you get through this treatment. there are also other organizations that have message boards and support for the days when we are crabby...
CUTEUS- you may want to reconcider the opioid/vicodin type meds. i read that they can interfer with interferon and cause viral replication like alcohol,moraphine... read this article...
http://www.hepatitisneighborhood.com/content/in_the_news/archive_1527.aspx
on the note of pain pills talk to your dr. about "tramadol/ULTRAM",it works great for pain from tx and is non habit forming and concidered safe, by both my gi and my gp. they both say,"it's a wonderful medicine"... that's rare to hear for a pain pill.
My my mt Thanby. It looks like we may not disagree on as many points as I first thought. I am VERY impressed with your comments today and your knowledge of all this. I knew that you had a lot of information to give when I first heard you come here and looked at your sites. Thanks for sticking around through that whole "food fight" that happened in the beginning.
The only thing I might add to what had already been posted is to nail down your doctor on what his position is on Procrit and Neupogen and anything else that may help to keep you on full dose through the anemia that is sure to come. Ask about who you contact "after hours" and on weekends. That is always when things seem to happen.
I also agree that you will prefer the Pegasys if he will prescribe it. Almost everyone here has reported fewer sides and a lesser degree of any particular side with that over the Peg/Intron. It is not any more effective for Hcv, unless you were a type 1, but the lesser sides are well worth it.
Get and keep your own personal copies of ALL your tests and bloodwork. Make THAT clear right away. If they know you will expect that now it will make it easier later and he will also know that you are VERY serious about your tx. If you don't act like a "sheep" he won't treat you like one.
I wish you all the best Bolger. We will all be here to help you ALL the way through.
You CAN do this Man! I did! And so have MANY others who still come here. We worked, we laughed, we cried, but we made it!!
KICK A$$.......................
The only thing I might add to what had already been posted is to nail down your doctor on what his position is on Procrit and Neupogen and anything else that may help to keep you on full dose through the anemia that is sure to come. Ask about who you contact "after hours" and on weekends. That is always when things seem to happen.
I also agree that you will prefer the Pegasys if he will prescribe it. Almost everyone here has reported fewer sides and a lesser degree of any particular side with that over the Peg/Intron. It is not any more effective for Hcv, unless you were a type 1, but the lesser sides are well worth it.
Get and keep your own personal copies of ALL your tests and bloodwork. Make THAT clear right away. If they know you will expect that now it will make it easier later and he will also know that you are VERY serious about your tx. If you don't act like a "sheep" he won't treat you like one.
I wish you all the best Bolger. We will all be here to help you ALL the way through.
You CAN do this Man! I did! And so have MANY others who still come here. We worked, we laughed, we cried, but we made it!!
KICK A$$.......................
To add to your information about asking your GI about Procrit...don't beat around the bush like I did ("is the Dr good about giving you Procrit") I was told, "oh yes, very good". Yea, he was REAL good at referring me to an Oncologist (which took 3 weeks) who wanted me to come in weekly to get the shot. Luckly this guy has a heart and gave me a prescription. But in the meantime, I had to spend a day in the ER taking asthma medicine (for shortness of breath) and used all my sick and vacation time due to not being able to work cause I was so anemic. Oh and by the way, I DO NOT HAVE ASTHMA!! The ER Dr doesn't know sh_t about Hep C and neither did my GP who gave me more asthma meds for shortness of breath. Grrrrrrrrr.
Thanks Teresa for your help. If I can just get the energy and mind set to get some help I should get better. I would at least like to keep trying until I find out if I'm a responder. Sorry for sounding so bitter, but I was in the medical field for years and I don't remember "my doctors" being so uncaring.
Thanks Teresa for your help. If I can just get the energy and mind set to get some help I should get better. I would at least like to keep trying until I find out if I'm a responder. Sorry for sounding so bitter, but I was in the medical field for years and I don't remember "my doctors" being so uncaring.
ty for taking the time to be concerned about the pain meds, I did see that info when it came out. I have tried ultram and piroxicam and about another dozen of nsaids, they were not effective against my pain, which I now believe to have been caused by hcv. since 1988, I have had large joint pain, leg, hands, lower back, etc. gone to scores of drs. prescribed every new guy on the block, the latest, bextra, has a warning on liver disease, just like the others.
There is no true liver friendly analgesic, and I prefer to take a lower dose of an effective med, than extra daily doses of extra strength otc meds. I feel it is better to take one vicoprofen a day than over 800mg of ibuprofen, which was the only effective med in my case.
There are scores of meds claiming to be pain killers when in reality they are mostly antinflamatories that don't work long term in spite of their claims. after 15 yrs of trying these meds I want to take what is effective in giving me long lasting relief. I will get off when my pain subsides. I don't want to have to take these for the rest of my life. That is why I'm trying tx.
TY so much for caring. Best health to you
I am hoping it does not interfere with tx (I did clear)
There is no true liver friendly analgesic, and I prefer to take a lower dose of an effective med, than extra daily doses of extra strength otc meds. I feel it is better to take one vicoprofen a day than over 800mg of ibuprofen, which was the only effective med in my case.
There are scores of meds claiming to be pain killers when in reality they are mostly antinflamatories that don't work long term in spite of their claims. after 15 yrs of trying these meds I want to take what is effective in giving me long lasting relief. I will get off when my pain subsides. I don't want to have to take these for the rest of my life. That is why I'm trying tx.
TY so much for caring. Best health to you
I am hoping it does not interfere with tx (I did clear)
My biopsy showed bridging fibrosis before tx (stage 3). Based on what I've seen, we have hope for liver improvement as well as SVR from the tx.
It's a great idea to check with the physician about the things mentioned above. I've see four specialists to deal with all the HCV, tx sides, and complications. They're all worth their weight in gold. The GP, my primary, helped me with the Paxil. The neurologist and physical medicine doc help with pain meds for the neuropathy. The best choice for me is Neurontin and Oxycodone (without any tylenol added). I can't take any NSAIDS, like ibuprophen, vioxx, etc.
The disease and the tx resulted in my going on disability. Many more people seem to be able to work than not. Dave
It's a great idea to check with the physician about the things mentioned above. I've see four specialists to deal with all the HCV, tx sides, and complications. They're all worth their weight in gold. The GP, my primary, helped me with the Paxil. The neurologist and physical medicine doc help with pain meds for the neuropathy. The best choice for me is Neurontin and Oxycodone (without any tylenol added). I can't take any NSAIDS, like ibuprophen, vioxx, etc.
The disease and the tx resulted in my going on disability. Many more people seem to be able to work than not. Dave
i'm so sorry that you are going thru all this pain. i will be praying for you. i pray God will protect you from anything negative concerning the pain meds.
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