Aa
to do standard treatment or not?
my question is to ALL -i have 1st GI appt. feb.5- i am 38 years old have NOT EVEN HAD THE FLU or cold since i was around 22,which this could've been the transmission date of my hcv-i was so sick for 2 weeks in the bed,should i take a chance with the standard treatment and wreck my great immune system ?i already feel a ton better by eating alot of organic foods and not taking any acetaminophen products at all.i am drinking my standard amount of water that the liver foundation suggested.(half my body weight which is 67.6 ounces daily ).the only reason i pushed for hep testing was cause i had found out my ex that died last march was positive.
but i feel quite good just by adjusting my diet and watching what i put into my body.my legs still kill me and my ankle joints still swell on daily basis.i have been doing alot of research on treatment and some ppl.never get their previous immune systems back.i am type1a.all my fam.dr would tell me @ 1st of dec. was "it was progressing" and that was it.i would like other ppl's opinions on this most serious decision and how their immune system has been after treatment.i do not have any kind of support system where i could take off work for this treatment and i do feel like i am on a verge of my 2nd divorce.i have also been reading that there will be better treatments available in the future.everyone on site keeps putting all these #'s up but i have no idea what they are talking about.what #'s should i ask for from this doctor?thanks for any info and opinions on this matter from anybody,this is worrying me to death.
but i feel quite good just by adjusting my diet and watching what i put into my body.my legs still kill me and my ankle joints still swell on daily basis.i have been doing alot of research on treatment and some ppl.never get their previous immune systems back.i am type1a.all my fam.dr would tell me @ 1st of dec. was "it was progressing" and that was it.i would like other ppl's opinions on this most serious decision and how their immune system has been after treatment.i do not have any kind of support system where i could take off work for this treatment and i do feel like i am on a verge of my 2nd divorce.i have also been reading that there will be better treatments available in the future.everyone on site keeps putting all these #'s up but i have no idea what they are talking about.what #'s should i ask for from this doctor?thanks for any info and opinions on this matter from anybody,this is worrying me to death.
As others above have said, there is no way to know how much or how little liver damage you may have until you have a liver biopsy. Until you have a liver biopsy, you won't be able to make an informed decision about whether or not to treat your Hep C now. The standard treatment for Genotype 1a right now is a triple therapy (a combination of three drugs: Interferon, Ribavirin, and either Victrellis or Incivek). If you have liver damage, and your damage is fibrosis stage 1 or 2, your doctor will probably say it's OK to wait a few years to treat until new medications are available. If you have liver damage, and your damage is fibrosis stage 3 or 4, your doctor will probably say that you should treat now. What you do not want to happen is you do not want to wait to treat and then find out that your liver damage has progressed to fibrosis stage 4 (Cirrhosis). The progression with liver fibrosis is unpredictable and the exact time or point when the damage progresses from one stage to another is not predictable. My husband has probably had Hep C for about 37 years, but didn't have any symptoms or find out that he had it until 6 years ago. In 2007 he was diagnosed with Hep C, had a liver biopsy, and was diagnosed with fibrosis between f1 and f2. In 2010 he had a second liver biopsy and was diagnosed with fibrosis at f4 (Cirrhosis). He has treated 3 times in the past six years, but has failed all 3 treatments so far. I strongly recommend that you request a liver biopsy as soon as possible, and make your decision with your doctor after you have those results.
Advocate1955
Advocate1955
Ah, that is some good news then~ If you stick around here, you will get some great personal imfo, and alot of education on the subject, to help you make your decision.
A biopsy is still the best way to actually see what's going on though.
Wishing you the best, with your surgery~ Katy
A biopsy is still the best way to actually see what's going on though.
Wishing you the best, with your surgery~ Katy
well i go in for a gyno lap surgeryMONDAY),hospital called for their pre-op nurse just said my platelets were excellent,i plan on finding out exact either @hospital or when i go back in 2 weeks @ his office.so thats some good news.
Okay, hmmm. First off, before anything, get the Biopsy.
Also, about the #'s: the blood tests you get at the lab, are important. You will have a "CBC" blood test, that will tell you what is out of normal range. Remember to get copies of these lab reports, so you can refer to them, and ask us about their significance. If your "platelets" are lwoer than normal, then that may be a sign that your liver is headed towards cirrhosis.
I was like you, I had Hep c for 20 yrs, but did all the organic health foods, but when I went thru menopause, my platelets went below normal, and I had elevated Bilirubin, and a few other things out of the normal range, on my blood-work, for the first timein my life. I got a biopsy, and was relieved to find out I was only Stage 2 (there are four stages, and 4 is cirrhosis, which is irreversible, but if you get rid of the Hep, before stage 4, then your liver will heal.
It is really important to catch this tricky virus, and get rid of it, before you have cirrhosis!
I dont know your age, or what line of work you are in, but it is a good thing that you are not sickly, because that means you are not on other meds, and it will be easier for you to treat, because of your good health. This will give you a better chance at clearing the virus, the fact that you are still healthy.
Is it just your ankle joints swlling, or the whole leg? If itis the whole leg, then that may be edema, which is a sign of a bad liver. If itis just the ankle joint that is swollen, then that sounds like it may be Rheumatoid Arthritis. You should get tested for Arthritis, to rule that out, because the Interferon can make auto-immune diseases progress,and arthritis is in that category.
You can also get a test, for something called Cryroubleanemia ( I totally misspelled it, but the search engine should fix it, or someone else on here help?), whcih is a problem that people with Hep C sometimes have, which causes joint pain. It causes these little gel packs to harden in the joints. If that is the case, then there is a 50% chance that Treatment will clear that up.
My Doctor also referred me to a GI, who knew nothing about Hep C, didn't treat people for it, and told me to come back when I was 50 yrs old, for a colonoscopy...
Hepatologists are harder to find, I actually had a hard time finding a Doctor to Treat me, and I live in Oakland, Ca, where Hep C is an epidemic..go figure? We did have Liver Clinic here, and they Treat, but didn't accept my kind of Medical Insurance (the crappy kind)
NOw, I did end up Treating, it was only for 28 weeks, and I had no support from my friends or family, and also took care of my 2 sons, ages 10 and 12 yrs old. But I only worked part-time. I got tired in the afternoon, and exhausted by night, so I had to do my shopping at 2 pm, and begin preparing my dinner, by 4 pm, so I could eat well. It is important to eat well, while on this Treamtment.
There are tow different meds used, to treat genotyp 1's" Teleprivir (aka Incivek) and Bocperevir (aka Victrelis). Both are reffered to as Protease Inhibitors and they both often times, cause "hemolytic anemia", which was my main problem/side effect. They have a rescue drug for that, called "Procrit", but be aware, the anemia is a common side affect, and causes extreme fatigue. I also got increased joint pain during treatment, which is also a common side affect, but I am 5 month s post Treatment now, and it is starting to clear up, and I am doing strenghening exercises.
The Teleprevir has more side effects than the Boceprevir, but you only have to takeit for 12 weeks, so that is the plus there~
Also, about the #'s: the blood tests you get at the lab, are important. You will have a "CBC" blood test, that will tell you what is out of normal range. Remember to get copies of these lab reports, so you can refer to them, and ask us about their significance. If your "platelets" are lwoer than normal, then that may be a sign that your liver is headed towards cirrhosis.
I was like you, I had Hep c for 20 yrs, but did all the organic health foods, but when I went thru menopause, my platelets went below normal, and I had elevated Bilirubin, and a few other things out of the normal range, on my blood-work, for the first timein my life. I got a biopsy, and was relieved to find out I was only Stage 2 (there are four stages, and 4 is cirrhosis, which is irreversible, but if you get rid of the Hep, before stage 4, then your liver will heal.
It is really important to catch this tricky virus, and get rid of it, before you have cirrhosis!
I dont know your age, or what line of work you are in, but it is a good thing that you are not sickly, because that means you are not on other meds, and it will be easier for you to treat, because of your good health. This will give you a better chance at clearing the virus, the fact that you are still healthy.
Is it just your ankle joints swlling, or the whole leg? If itis the whole leg, then that may be edema, which is a sign of a bad liver. If itis just the ankle joint that is swollen, then that sounds like it may be Rheumatoid Arthritis. You should get tested for Arthritis, to rule that out, because the Interferon can make auto-immune diseases progress,and arthritis is in that category.
You can also get a test, for something called Cryroubleanemia ( I totally misspelled it, but the search engine should fix it, or someone else on here help?), whcih is a problem that people with Hep C sometimes have, which causes joint pain. It causes these little gel packs to harden in the joints. If that is the case, then there is a 50% chance that Treatment will clear that up.
My Doctor also referred me to a GI, who knew nothing about Hep C, didn't treat people for it, and told me to come back when I was 50 yrs old, for a colonoscopy...
Hepatologists are harder to find, I actually had a hard time finding a Doctor to Treat me, and I live in Oakland, Ca, where Hep C is an epidemic..go figure? We did have Liver Clinic here, and they Treat, but didn't accept my kind of Medical Insurance (the crappy kind)
NOw, I did end up Treating, it was only for 28 weeks, and I had no support from my friends or family, and also took care of my 2 sons, ages 10 and 12 yrs old. But I only worked part-time. I got tired in the afternoon, and exhausted by night, so I had to do my shopping at 2 pm, and begin preparing my dinner, by 4 pm, so I could eat well. It is important to eat well, while on this Treamtment.
There are tow different meds used, to treat genotyp 1's" Teleprivir (aka Incivek) and Bocperevir (aka Victrelis). Both are reffered to as Protease Inhibitors and they both often times, cause "hemolytic anemia", which was my main problem/side effect. They have a rescue drug for that, called "Procrit", but be aware, the anemia is a common side affect, and causes extreme fatigue. I also got increased joint pain during treatment, which is also a common side affect, but I am 5 month s post Treatment now, and it is starting to clear up, and I am doing strenghening exercises.
The Teleprevir has more side effects than the Boceprevir, but you only have to takeit for 12 weeks, so that is the plus there~
well give me some questions to ask,i know about asking for liver biopsy,i dont understand WHY my fam. dr. is sending me to GI DR. and not hepatologist.i also got an appt. w/ another GI dr. march22nd also.i dont know why fam.dr. referred me to two different practices...so liver biopsy,but whats all the #'s everyone's talking about?
i have quit alcohol all together,i hav never been heavy drinker but i have gotten quite drunk in the past BUT the last time i did get really drunk,i felt so bad,i said never again,but i have drank a beer or glass of wine but now nothing...
but i really do feel alot better since i have found out about this disease.but from what i gather this disease affects everyone different,i dont wish to rush into anything thats gonna hurt me and me be weak.my family life really stinks and i will not have any kind of support from anyone,my husband doesnt understand how serious this is,he loves to drink hard liquor at least twice a week,thats our whole problem,you know the old saying you cant stand a drunk not unless yr drunk,well this is me right now,my son,17,has begged me to seek treatment thats THE reason i am going to look at all the angles before i jump into anything,SO ANY OPINION AND YOUR PERSONAL EXPERIENCE W/ OR W/O TREATMENT IS GREATLY APPRECIATED..
i have quit alcohol all together,i hav never been heavy drinker but i have gotten quite drunk in the past BUT the last time i did get really drunk,i felt so bad,i said never again,but i have drank a beer or glass of wine but now nothing...
but i really do feel alot better since i have found out about this disease.but from what i gather this disease affects everyone different,i dont wish to rush into anything thats gonna hurt me and me be weak.my family life really stinks and i will not have any kind of support from anyone,my husband doesnt understand how serious this is,he loves to drink hard liquor at least twice a week,thats our whole problem,you know the old saying you cant stand a drunk not unless yr drunk,well this is me right now,my son,17,has begged me to seek treatment thats THE reason i am going to look at all the angles before i jump into anything,SO ANY OPINION AND YOUR PERSONAL EXPERIENCE W/ OR W/O TREATMENT IS GREATLY APPRECIATED..
I was told Hep-C never lies Dormant. Just some people's progression of liver disease happens faster than others but it is always attacking the liver.
I am not sure I follow your logic about the immune system. Your immune system is compromised to some degree already. You have a liver disease. Here is an article on how the hepatitis-C virus evades immune
http://www.medicalnewstoday.com/releases/25898.php
I am glad you feel great now however I am inclined to agree with the others. Hepatitis C is known as the "silent killer" and the "shadow disease" since it lies ★¸¸.☆Dormant★¸¸.☆.
It is largely asymptomatic (not showing symptoms) however that does not mean your fibrosis is not progressing. That is in part why so many people go undiagnosed. What you are saying in your post is very common and many of us thought and felt beforehand as well. You don't have to wait until you feel miserable or begin showing noticeable symptoms.
There are stages of fibrosis ~ do you happen to know yours? I encourage you to find out your exact status with the virus and make an informed decision based on fact. That way you can evaluate all your treatment options (treat now, wait, look for trial, etc...)
Best of luck♫
http://www.medicalnewstoday.com/releases/25898.php
I am glad you feel great now however I am inclined to agree with the others. Hepatitis C is known as the "silent killer" and the "shadow disease" since it lies ★¸¸.☆Dormant★¸¸.☆.
It is largely asymptomatic (not showing symptoms) however that does not mean your fibrosis is not progressing. That is in part why so many people go undiagnosed. What you are saying in your post is very common and many of us thought and felt beforehand as well. You don't have to wait until you feel miserable or begin showing noticeable symptoms.
There are stages of fibrosis ~ do you happen to know yours? I encourage you to find out your exact status with the virus and make an informed decision based on fact. That way you can evaluate all your treatment options (treat now, wait, look for trial, etc...)
Best of luck♫
I thought I was very healthy until I was diagnosed with hep C and chrirrosis.
This virus can fool you, you can't go by how you feel.
The most important thing to consider before deciding treatment, is how healthy is your liver ? Seek out a competent hepatologist and find out the condition of your liver.
If you have no or minimal damage you might decide to wait for better treatment options that are doing well in clinical trials. If you have more damage, you should probably not wait.
One thing you should not do, is drink alcohol. Coffee however is good for our livers.
Good luck.
This virus can fool you, you can't go by how you feel.
The most important thing to consider before deciding treatment, is how healthy is your liver ? Seek out a competent hepatologist and find out the condition of your liver.
If you have no or minimal damage you might decide to wait for better treatment options that are doing well in clinical trials. If you have more damage, you should probably not wait.
One thing you should not do, is drink alcohol. Coffee however is good for our livers.
Good luck.
No matter how good you feel your liver still could be deteriorating. You need to see a hepatologist (liver specialist) to better assess your liver. Definitely need a liver biopsy to see exactly what stage liver fibrosis. What would concern me is ankle swelling.
Personally I would not wait for new drugs. There are drugs now that offer 80% cure.
Keep in mind this disease affects everyone differently. It has a sneaky way of creeping up on you and biting you in the butt!
Best of luck
Personally I would not wait for new drugs. There are drugs now that offer 80% cure.
Keep in mind this disease affects everyone differently. It has a sneaky way of creeping up on you and biting you in the butt!
Best of luck
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