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Hepatitis C- What should I do?
I have had Hepatitis C for probably 25 to 30 years. I have been putting off treatment because it is expensive and seems to do as much damage as it does good from what I understand. I have been trying to talk to the doctors, but they are extremely vague on telling me exactly what the levels they talk about mean. They simply say the levels mean the Hep C is active and I should start treatment. I never really cared before now as I really did not care if I lived much longer or not, but I am now more concerned that I try to do the right thing with this so I can be here for as long as I can for my wifes sake...as well as my own. I have found a new joy in living and am looking forward to being here for awhile. All this means is that if I am going to be here for awhile, I had better make the right choice on whether to get treatment or not. From what I understand, I may never actually suffer from the liver damage or any other problems. I am thinking that they are now telling me that with the elevated levels of whatever it is they are talking about, this is no longer the case and they believe I need the treatment. Exactly how bad is the treatment. My brother went through it and came out clear of Hep C, but killed off his immune system. I don't know if that was because of the treatment, or because he only had the use of about 15% of his liver when they started. I don't think he will be here much longer. Please tell me what you can as I don't seem to be able to find anyone that wants to actually tell me what is going on..Bill
from your post, I assume you are a Geno type 2. I am a Geno 2b and my doctor indicated treatment would be 24 weeks, and he said the cure rate was very high. I also asked him if this virus would go away without tx and that was "no". I want to do everything I can to get rid of it and have the support of a wonderful husband. I take 180 micrograms injection with 4 Riba (200mg each) - I am 125 lbs. Cost is a big factor. You may want to ask your doctor's office if there is any assistance for this. I have read somewhere there is assistance. It may even be thru the drug co. itself, Pegassist. I'm not sure, but research into this is worthwhile. My insurance company gave me the name of Option Meds and they are mail order and will offer drug at reduced rate (from my pharmacy that I use with my ins.) and take my insurance co. benefits.
The most important thing to know is that for most people on treatment - life goes on like normal. While it's not fun in any way it IS doable.
There are so many people in here who understand exactly what you mean (I am sure one). As a hardcore alcoholic and addict for many years I just didn't care and I kept on keeping on with all my old habits.
When I sobered up and found out what I had done to my liver with all my "I'll worry about it later" attitude - well now I could kick my own ass, hard. I destroyed something that I need to have to LIVE and I destroyed it big time.
I can't stay it's not always easy not drinking by any means - but after I found out how little I had left of my liver (and I KNOW that the partying in coordination with the Hep is what did it, I can admit that much) well...now I can't tell you how much I worry about my liver! It used to worry me whether I had enough vodka to get through the night now...it's whether or not I've had enough water for the day. :)
Just know there are GREAT people in here who will do all they can to help. We were all afraid at one time.
Good luck, get back to us with your info!
There are so many people in here who understand exactly what you mean (I am sure one). As a hardcore alcoholic and addict for many years I just didn't care and I kept on keeping on with all my old habits.
When I sobered up and found out what I had done to my liver with all my "I'll worry about it later" attitude - well now I could kick my own ass, hard. I destroyed something that I need to have to LIVE and I destroyed it big time.
I can't stay it's not always easy not drinking by any means - but after I found out how little I had left of my liver (and I KNOW that the partying in coordination with the Hep is what did it, I can admit that much) well...now I can't tell you how much I worry about my liver! It used to worry me whether I had enough vodka to get through the night now...it's whether or not I've had enough water for the day. :)
Just know there are GREAT people in here who will do all they can to help. We were all afraid at one time.
Good luck, get back to us with your info!
I agree with what most have said here about treatment being different for everyone and the side effects aslo being different. Just fill yourself with info know what you can expect from treatment and go from there only you can decide if it is right for you.
One note if you don't have ins or have a large co-pay, there is a way to get your medications for free thru the drug companies... even the rescue drugs if needed the income levels are rather high so most lay people will qualify I think like 70,000 a yr. Depending on the drugs your doc puts you on, the people here can give you the names and numbers to these places. I would but I only know commitment to care (pegintron) But there is also one for pegasys, Procrit (for low red blood cells) and neupogen (for low white).
Good luck and welcome to the forum
One note if you don't have ins or have a large co-pay, there is a way to get your medications for free thru the drug companies... even the rescue drugs if needed the income levels are rather high so most lay people will qualify I think like 70,000 a yr. Depending on the drugs your doc puts you on, the people here can give you the names and numbers to these places. I would but I only know commitment to care (pegintron) But there is also one for pegasys, Procrit (for low red blood cells) and neupogen (for low white).
Good luck and welcome to the forum
You guys are right. I have had this for a long time and have known about it for at least 15 years. I am tired of having it hanging over my head. I am going to tell them to start treatment when I go in Wednesday. Sick of wondering every time I get a pain in my stomach if it is related, or if all the stones in my kidney are related, or if having my gallbladder removed for stones was caused by it. Not knowing if the fatigue I go through is because I am getting older or because of hep c.
As far as a plan B...I have no choice, I will have to keep working. I have to many people depending on me to not work. Plus now I will have the expense of the treatment, which from what I understand is going to be a lot even with my insurance.
Thank you for the advice and hope you don't mind me joining your group.
As far as a plan B...I have no choice, I will have to keep working. I have to many people depending on me to not work. Plus now I will have the expense of the treatment, which from what I understand is going to be a lot even with my insurance.
Thank you for the advice and hope you don't mind me joining your group.
not meaning to be a pest..just realized what the genotype is:I think you are talking about what kind it is. From what the doctors say, it is the one that calls for 6 month treatment and has the highest rate of cure. Sorry I don't know more, I am not very good when it comes to the memory department, so I forget to ask some questions and when I remember to ask...I forget the answer..lol
By the way, I am 52 with a great job and a fantastic wife of 10 years and can retire at 63, life is getting very good:-)
By the way, I am 52 with a great job and a fantastic wife of 10 years and can retire at 63, life is getting very good:-)
You are genotype 2 or 3.
The more info you give the more likely it becomes that you should stop procrastinating and start treatment-and that's obviously what the doctor thinks too!
The more info you give the more likely it becomes that you should stop procrastinating and start treatment-and that's obviously what the doctor thinks too!
No one can guarantee that you will be able to continue to work full time in construction while on treatment. In fact, many of us here have ad to cut back on work, or stop entirely, with less physically taxing professions. Everyone reacts different to the drugs with no way of predicting in advance.
It's unfortunate you can't get more information from your local medical team. It might be worthwhile taking your medical records and at least have them evaluated by a hepatologist (liver specialist) at the closest teaching hospital. You wouldn't necessarily have to treat with them, just have them review your case and answer some questions. They could also help direct treatment with your local doctor if you decide to treat.
Do you know what stage liver damage you had at your last biopsy? If the liver damage wasn't serious, you might want to get another biopsy before you make a decision. If you still have little or no liver damage, it's quite resonable to wait for better treatments even as a genotype 2. It's also reasonable to treat now but do have a plan "b" in case you have to cut back or take temporarily take leave from your work.
All the best,
-- Jim
It's unfortunate you can't get more information from your local medical team. It might be worthwhile taking your medical records and at least have them evaluated by a hepatologist (liver specialist) at the closest teaching hospital. You wouldn't necessarily have to treat with them, just have them review your case and answer some questions. They could also help direct treatment with your local doctor if you decide to treat.
Do you know what stage liver damage you had at your last biopsy? If the liver damage wasn't serious, you might want to get another biopsy before you make a decision. If you still have little or no liver damage, it's quite resonable to wait for better treatments even as a genotype 2. It's also reasonable to treat now but do have a plan "b" in case you have to cut back or take temporarily take leave from your work.
All the best,
-- Jim
I just did my 5th shot. I am a geno 2b. I don't even feel like I have meds in me. The ONLY side effect thus far is once in a while i get bone pain at night in my leg/hip area, but as soon as I use heating pad, it goes away.
My NP told me that geno 2's seem to have a much easier time with treatment. So far (fingers crossed) she is right. My hemo has only dropped one point.
Since you are in construction you are probably in good health due to the physical activity you do daily. Good health prior to treatment is helpful.
If you do treat make sure the doctor you are seeing gives you meds according to your weight. I am on 1,000 riba and 180 interferon. I weigh 143 lbs. Some doctors give 800 riba for everyone and newer studies show the meds should be given according to your weight.
wish you the best.
My NP told me that geno 2's seem to have a much easier time with treatment. So far (fingers crossed) she is right. My hemo has only dropped one point.
Since you are in construction you are probably in good health due to the physical activity you do daily. Good health prior to treatment is helpful.
If you do treat make sure the doctor you are seeing gives you meds according to your weight. I am on 1,000 riba and 180 interferon. I weigh 143 lbs. Some doctors give 800 riba for everyone and newer studies show the meds should be given according to your weight.
wish you the best.
I have actually had 2 biopsies done. The first they said there was minimal damage and no cirrhosis.(I quit drinking in between) The second they said my liver was actually better then the first. Both were a long time ago. I am actually going to the doctors assistant on Wednesday for the fourth time to start treatment. Each time I go, I try to ask questions and get exasperated when she refuses to talk to me unless I start treatment. I just get mad because I want to know what I am getting into and if it is really necessary for me to get treatment. What she tells me instead is that if I wait until cirrhosis sets in, she will not treat me. I have tried to find another doctor for treatment, but in this town, she is all there is. I work full time in construction and need to know that I can keep going in treatment...we need the money. I would like to be around as long as I can, but not at the cost of bankrupting my wife. Thank you for the replies and I will post results after seeing the nurses practitioner on Wednesday. Thinking I will go ahead and tell her I want a biopsy first. Then start treatment. Trying to think long term...very confused.
i think you are making a good decision in starting treatment. if i was a geno type 2 or 3 i would have treated. i'm a type 1 and on hold at this time. as far as the financial part of this treatment goes you can get assistance from the drug manufactures. it is not that had to get and very liberal on how much you can make a year to qualify. best of luck to you
Welcome to the Forum! You sound a lot like a lot of us when are new to treatment. It's scary not knowing what's ahead of us as far as work and side effects.
The physician's assistant doesn't sound very friendly. There are a lot of people who can direct you to another dr. or teaching university if she won't communicate with you.
That's good that you have the shorter tx. Is your construction work seasonal so you could pick a time with less work? I have to work too, my husband has a good job but with 4 kids and 2 in college we need my income.
Make a list of questions for the next visit and write down the answers while you are there.
Ask her how frequently they monitor your bloodwork. Lot's of people do have a drop in red blood cells or white and it takes additional meds to correct.These are known as rescue drugs.
Also ask when they test your viral load after you start treatment and how sensitive the test will be.
I found these two questions to be very important for my tx. I'm geno2, 9th shot Friday, still working full time.
I had a drop in Hgb and am taking procrit, but it's ok. You can do this!
BUG
The physician's assistant doesn't sound very friendly. There are a lot of people who can direct you to another dr. or teaching university if she won't communicate with you.
That's good that you have the shorter tx. Is your construction work seasonal so you could pick a time with less work? I have to work too, my husband has a good job but with 4 kids and 2 in college we need my income.
Make a list of questions for the next visit and write down the answers while you are there.
Ask her how frequently they monitor your bloodwork. Lot's of people do have a drop in red blood cells or white and it takes additional meds to correct.These are known as rescue drugs.
Also ask when they test your viral load after you start treatment and how sensitive the test will be.
I found these two questions to be very important for my tx. I'm geno2, 9th shot Friday, still working full time.
I had a drop in Hgb and am taking procrit, but it's ok. You can do this!
BUG
I like you was in a panic.25-30 years of HCV. For me TX wasnt bad.I know you here horro stories. I TX in 06 all 48 weeks never missed a day of work 50hrs never lost weight Stayed about 80% all the way though. It can its up and downs.Everybody is differant. You can do it
Just wanted to welcome you to the forum and let you know you're not alone.
The diagnosis and the treatment options are very confusing and, as someone who's relatively new to this, I have to stress that you should get as much info as possible about your condition, the side effects, the prognosis, the effect of sx on your job, your life, your finances, etc. It's all related.
You could not have found a better place to start your research.
The folks here are top-of-the-line.
Best of luck and keep us posted.
The diagnosis and the treatment options are very confusing and, as someone who's relatively new to this, I have to stress that you should get as much info as possible about your condition, the side effects, the prognosis, the effect of sx on your job, your life, your finances, etc. It's all related.
You could not have found a better place to start your research.
The folks here are top-of-the-line.
Best of luck and keep us posted.
We could give you some good advice here,but we need more information.
You sound like you don't know much of the jargon.
Please try and get the follow info.(ask your doctor for hard copies of your test results.
1)Viral genotype
2)Complete blood count
3) Liver function tests
4)Biopsy results,if you have had one or Fibroscan reading.
If you posted this info there are plenty of people here who could explain things.
In the meantime, based on the length of your infection you probably should opt for treatment.
It's not that bad-it's not fun but some people breeze through it and others don't.You can't predict.
The treatment doesn't 'destroy peoples immune systems'-it can do some funny things,but if you have a good specialist doctor they monitor you constantly and if anything starts to look irregular they take the appropriate action.
Don't reject the chance of being cured because of fear and lack of knowledge!
You sound like you don't know much of the jargon.
Please try and get the follow info.(ask your doctor for hard copies of your test results.
1)Viral genotype
2)Complete blood count
3) Liver function tests
4)Biopsy results,if you have had one or Fibroscan reading.
If you posted this info there are plenty of people here who could explain things.
In the meantime, based on the length of your infection you probably should opt for treatment.
It's not that bad-it's not fun but some people breeze through it and others don't.You can't predict.
The treatment doesn't 'destroy peoples immune systems'-it can do some funny things,but if you have a good specialist doctor they monitor you constantly and if anything starts to look irregular they take the appropriate action.
Don't reject the chance of being cured because of fear and lack of knowledge!
You need information to decide. What Genotype? Viral Load? AST/ALT? You need to have Biopsy to establish stage and grade of disease. You should be seeing a hepatologist specialist for this information. They are now finding earlier treatment is a big factor in acheiveing rapid viral response(RVR) and gives you better chance of Sustained Viral Response(SVR). Get with it!
Good Luck
Good Luck
First let me say I am very glad you have found a new joy in living. That's good medicine in itself.
Treatment is different for everyone. It is like looking at a color chart showing all the shades of grey.
First thing first though. Do you know your geno type? Have you had a biopsy? The stage of liver damage is a big factor. Treatment decisions such as is it worth are hard to determine unless you know these factors. Liver damage can indeed lead to big time problems if it progresses to cirrhosis. Is treatment worth it, yes to many many people. At the same time it may not if you have minimal liver damage you may want to wait for better drugs. The newest ones that look promising are used in conjunction with the ones that now standard (peg/riba). These are in clinical trials now.
Bottom line is you need to know your own status details and put them into the equation in determining the risk benefit for your own case.
The treatment was not easy for me but it was not that bad either. Some have had a worse experience and some had a better experience. (Shades of grey)
Good luck and if you can provide more details there are those here that are wiser than I that might be able to give you different perspectives.
Treatment is different for everyone. It is like looking at a color chart showing all the shades of grey.
First thing first though. Do you know your geno type? Have you had a biopsy? The stage of liver damage is a big factor. Treatment decisions such as is it worth are hard to determine unless you know these factors. Liver damage can indeed lead to big time problems if it progresses to cirrhosis. Is treatment worth it, yes to many many people. At the same time it may not if you have minimal liver damage you may want to wait for better drugs. The newest ones that look promising are used in conjunction with the ones that now standard (peg/riba). These are in clinical trials now.
Bottom line is you need to know your own status details and put them into the equation in determining the risk benefit for your own case.
The treatment was not easy for me but it was not that bad either. Some have had a worse experience and some had a better experience. (Shades of grey)
Good luck and if you can provide more details there are those here that are wiser than I that might be able to give you different perspectives.
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