Aa
Scared and need knowlegeable friend(s)
Hello, my name is Dee and I was just told I have high ammonia levels in my blood today for the first time. Had never heard anything about ammonia before.
Been reading-the "fog"- confusion, forgetfulness, etc. is all there. I have been going crazy wondering why I can't remember things and stay confused about others. now I know.
I've been told I'm a "level/stage" 3, (hate the terminology), and there are only 4. I'm getting pretty scared now guys. Am I facing the rough stuff now?
Been reading-the "fog"- confusion, forgetfulness, etc. is all there. I have been going crazy wondering why I can't remember things and stay confused about others. now I know.
I've been told I'm a "level/stage" 3, (hate the terminology), and there are only 4. I'm getting pretty scared now guys. Am I facing the rough stuff now?
To taste better? That's a new one for me. I think genetic modifications are usually done for purely economic reasons, like providing cereal grain plants the ability to produce their own pesticides (nevermind that people will then be eating that pesticide, the farmer can absolve himself of responsibility for that because he didn't apply the pesticide), or creating fruits that don't rot easily, or animals that produce more of whatever they make that is sold (more, not better, and certainly not healthier for either the animals or the consumers). In the old days farmers used to cross breed things for better taste, but that goal seems to have been dropped in favor of greater economic yield at whatever cost to taste or health.
GMOs are genetically modified organisms, plants or animals whose genes have been altered in some way to taste better, etc.
Dee, you don't have to give up red meat, unless your hepatologist says you need to. Just limit it to 1-2 times per week until your appt. Also don't cut out salt completely because that can be a problem. Just restrict it to around 2,000 mg (?) per day until you see the hepatologist and then ask. But be careful with the hot pockets and other processed foods. They have a lot of additives that are hard on the liver. If you are stage 3, it's not as critical, but still a good idea to make dietary changes. If you're stage 4, it's more important and helps your liver work better and longer. If you are more advanced stage 4, it's essential to find out exactly what kind of diet they want you to be on, as the wrong foods can make you sicker. We will hope for stage 3, not stage 4. But even so, most hepas will treat stage 3 as if it's beginning stage 4 I think.
You're doing great with all this new info. Glad you have your mom with you.
Advocate1955
You're doing great with all this new info. Glad you have your mom with you.
Advocate1955
Sorry, I hit post somehow. This laptop is too touchy. :(
We can eat one each and that's a meal. So, we get 6 meals out of that one box. I eat a LOT of cereal. I just LOVE it!!
What are GMO foods? I've gone on long enough. I appreciate any suggestions now that you know my financial situation. I appreciate any/everything you advise/suggest. Thank you for helping.
We can eat one each and that's a meal. So, we get 6 meals out of that one box. I eat a LOT of cereal. I just LOVE it!!
What are GMO foods? I've gone on long enough. I appreciate any suggestions now that you know my financial situation. I appreciate any/everything you advise/suggest. Thank you for helping.
I'm re-reading all the posts written to me about my questions. Sure enough I missed/forgot some of it.
I'm addressing your response. First question: What is "in a clinical setting"? I don't believe I'm at ESLD. Last biopsy was in Jan. 2013 and I was at stage 3. One of the responses said I may have gone into stage 4 due to the ammonia in my blood and the other symptoms. I go to the Dr. on Aug. 27th. I will certainly post whatever I am told.
As for the red meat, I love it, but have no problem giving it up. (Even those wonderful rib eye steaks. YUMMMM!! :) As far as I'm concerned, red meat no longer exists for me. I can give up salt no problem, but processed foods will be a problem. Being on disability and food stamps makes it next to impossible to buy fresh foods. We do get banana's no matter what. Helps with stomach problems which mom and I both have. (We live together. She lost all her money in that wall street thing some years back. My low income meant I needed a roommate also. We saved
each other!) So, a box of hot pockets, and other items, last us awhile.
I'm addressing your response. First question: What is "in a clinical setting"? I don't believe I'm at ESLD. Last biopsy was in Jan. 2013 and I was at stage 3. One of the responses said I may have gone into stage 4 due to the ammonia in my blood and the other symptoms. I go to the Dr. on Aug. 27th. I will certainly post whatever I am told.
As for the red meat, I love it, but have no problem giving it up. (Even those wonderful rib eye steaks. YUMMMM!! :) As far as I'm concerned, red meat no longer exists for me. I can give up salt no problem, but processed foods will be a problem. Being on disability and food stamps makes it next to impossible to buy fresh foods. We do get banana's no matter what. Helps with stomach problems which mom and I both have. (We live together. She lost all her money in that wall street thing some years back. My low income meant I needed a roommate also. We saved
each other!) So, a box of hot pockets, and other items, last us awhile.
Hi again Dee,
Here is the link to the questions. You can copy and paste them into a word doc and modify them any way you wish to suit your specific situation. Again, thanks to OH and Hector for creating the questions:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
Advocate1955
Here is the link to the questions. You can copy and paste them into a word doc and modify them any way you wish to suit your specific situation. Again, thanks to OH and Hector for creating the questions:
http://www.medhelp.org/user_journals/show/615811/Preparing-for-first-appointment-with-hepatologist
Advocate1955
Dee, I have a set of questions in my journal that are a compilation of some questions that Orphaned Hawk put together and some questions that Hector put together. You are welcome to look at them and print them to take with you to your appointment with the hepatologist. Just click on my name and then click on my journals and scroll down until you see the title.
Advocate1955
Advocate1955
My appt. is August 27th @ 10:30 am. Will let everyone knows what happens. Thanks to all of your wonderfully informative replies. Now I'll have more knowledge and confidence talking to the Dr. W/out all of you I wouldn't have known to ask about the medicine "Lactolose" (spelling).
Meantime, I will be reading the posts and so on to keep learning!
AGAIN, THANK YOU ALL FOR SO MUCH HELP AND THE ACCEPTANCE.
Meantime, I will be reading the posts and so on to keep learning!
AGAIN, THANK YOU ALL FOR SO MUCH HELP AND THE ACCEPTANCE.
Hi Dee, glad you came here, and have gotten excellent advice from the above posters. Your Hepatologist can guide you,and we will all be here for support~
Hello Dee, welcome my friend. You have received the best information above. Please read it all carefully, make a list, prioritize it to take to the hepatologist. You will want to get copies of all of your lab work so that you can refer to it from time to time as people will ask and it is confusing without having paperwork in front of you.
The new drug is for people who have never treated before so that would not work for you. There is another called Simeprevirer which has been submitted to the FDA for approval but there is no telling when it might be approved.
I waited for the Incivek to be approved for 2 years. I wish there had been something else at the time but I was a previous relapser. Now I am cured and very happy that I treated.
Please keep in touch, there are many wonderful people on here, much like the people above who will be more than willing to help you along your journey.
My best to you, Dee
The new drug is for people who have never treated before so that would not work for you. There is another called Simeprevirer which has been submitted to the FDA for approval but there is no telling when it might be approved.
I waited for the Incivek to be approved for 2 years. I wish there had been something else at the time but I was a previous relapser. Now I am cured and very happy that I treated.
Please keep in touch, there are many wonderful people on here, much like the people above who will be more than willing to help you along your journey.
My best to you, Dee
Oops, I hit post somehow. I apologize.
Anyway...that list describes me perfectly. Even my driving's changing. I don't shake, but man do I itch! Days and nights mixed up-that's why I'm up now huh? LOL
So, I need to get hooked up w/a Univ. Hosp. I have a choice of Madison, Wi. or Chicago. I'm going to check out Chicago. But does that mean ALL my Dr. appt.'s will be in Chicago? I live in Rockford, 90 miles N.W. of Chicago. No car and live on $730/mo. disability. This is a very big concern for me. On the bright side-I have very close friends there that I can always stay with. :)
And yes, I do have a Gastroenterologist here in Rockford where I live. Quite a few people mentioned I should get one if I don't have one. I won't mind changing Dr.'s. The place I go now is so cold and impersonal. Had the greatest Dr. before the hospital closed down the whole Gastro Dept.
He's the one that did my biopsy and so on, or I'd have never known anything and I was diagnosed in the 90's. Before I found him I went to the gastro ctr. I'm having to go back to now. They're the only "game" in town. So thanks for the heads up on Chicago and getting set up in a transplant hospital. VERY GOOD TO KNOW!
Orphanedhawk mentioned GMO foods. I do not know what that is. Also, aren't foods high in protein a no-no?
What about iced tea and 1/2 caff coffee? I might drink 2-3 cups coffee/wk., but I drink my iced tea all day-about a ga./day with 2/3 a cup of real sugar in it.
Yes, I do smoke cigarettes-pack a day.
I plan on talking about the medication Laculose, (?)
This has helped me tremendously. Your teaching me a LOT. Thank you, my very important new friends!
Anyway...that list describes me perfectly. Even my driving's changing. I don't shake, but man do I itch! Days and nights mixed up-that's why I'm up now huh? LOL
So, I need to get hooked up w/a Univ. Hosp. I have a choice of Madison, Wi. or Chicago. I'm going to check out Chicago. But does that mean ALL my Dr. appt.'s will be in Chicago? I live in Rockford, 90 miles N.W. of Chicago. No car and live on $730/mo. disability. This is a very big concern for me. On the bright side-I have very close friends there that I can always stay with. :)
And yes, I do have a Gastroenterologist here in Rockford where I live. Quite a few people mentioned I should get one if I don't have one. I won't mind changing Dr.'s. The place I go now is so cold and impersonal. Had the greatest Dr. before the hospital closed down the whole Gastro Dept.
He's the one that did my biopsy and so on, or I'd have never known anything and I was diagnosed in the 90's. Before I found him I went to the gastro ctr. I'm having to go back to now. They're the only "game" in town. So thanks for the heads up on Chicago and getting set up in a transplant hospital. VERY GOOD TO KNOW!
Orphanedhawk mentioned GMO foods. I do not know what that is. Also, aren't foods high in protein a no-no?
What about iced tea and 1/2 caff coffee? I might drink 2-3 cups coffee/wk., but I drink my iced tea all day-about a ga./day with 2/3 a cup of real sugar in it.
Yes, I do smoke cigarettes-pack a day.
I plan on talking about the medication Laculose, (?)
This has helped me tremendously. Your teaching me a LOT. Thank you, my very important new friends!
Thanks Hector, and EVERYONE ELSE that has responded to my post.
I have questions and so did some of you so I'm rolling this all into one big response. Hope no one minds.
I do not know if I'm a genotype 1 or not 4 sure. Tried to find out today but the nurse wasn't able to locate that info. right then. I did, however, get my last ALT/ASTlevels. Done on this past Friday. My ALT was 50 and AST was 69. (I also asked what the "norms" are. For ALT it's 0-33. For AST it's 0-32.) My last BIOPSY n ULTRASOUND were in January 2013.
I treated in mid/late 90's with ribavirin and interferon. As you said, there was no pegylated interferon back then. I didn't respond to the 6 mos. worth of treatment. Being a single mom of 3 and in college fulltime and working, I simply couldn't take those side effects from 3 shots/weekly and the ribavirin anymore. That stuff was evil back then. I hear the pegylated is easier on us and that you take less shots a week. I pray to God it is less difficult. Remembering those days has me terrified of doing treatment again.
Hector, the list of symptoms you gave me for the, dog gone it I forgot what it's called. :(
I have questions and so did some of you so I'm rolling this all into one big response. Hope no one minds.
I do not know if I'm a genotype 1 or not 4 sure. Tried to find out today but the nurse wasn't able to locate that info. right then. I did, however, get my last ALT/ASTlevels. Done on this past Friday. My ALT was 50 and AST was 69. (I also asked what the "norms" are. For ALT it's 0-33. For AST it's 0-32.) My last BIOPSY n ULTRASOUND were in January 2013.
I treated in mid/late 90's with ribavirin and interferon. As you said, there was no pegylated interferon back then. I didn't respond to the 6 mos. worth of treatment. Being a single mom of 3 and in college fulltime and working, I simply couldn't take those side effects from 3 shots/weekly and the ribavirin anymore. That stuff was evil back then. I hear the pegylated is easier on us and that you take less shots a week. I pray to God it is less difficult. Remembering those days has me terrified of doing treatment again.
Hector, the list of symptoms you gave me for the, dog gone it I forgot what it's called. :(
Hello, Will, and thank you for responding. After reading your post I called and asked my Dr. what my ALT/AST levels were when I had my bloodwork done on Fri. 8-9-13. ALT is 50 and AST is 69. Sorry, I'm still not sure of my genotype and she couldn't find the info. right then.
I haven't finished reading all the posts yet. I look forward to hearing from you.
I haven't finished reading all the posts yet. I look forward to hearing from you.
"I do have a Dr. and have been holding off on treatment waiting for this new one to get approved. I was a non-responder to ribavirin and interferon back in the mid to late 90's."
Despite what your doctor says, and you treated before, then next treatment to be available treatment with Sofosbuvir in early 2014 is not for patients like you. Assuming you are genotype 1.
The treatment that should be available in early 2014. For genotype 1 patients, Gilead's new treatment, (peg-interferon, ribavirin and sofosbuvir) is ONLY FOR TREATMENT NAIVE patients as ActingBrandNew pointed out.
" The data submitted in this NDA support the use of ... for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-NAIVE patients with genotype 1, 4, 5 and 6 HCV infection. "
That means it is not for patients who have treated before. If you treated before with peg-interferon and ribavirin (although this combo was not available in the late nineties) you will have to wait for the next generation of treatment which will be all oral drugs without peg-interferon.
Ammonia?
It is very rare to have high ammonia levels caused by liver disease without being stage 4 (cirrhosis).
When was the last time you had a biopsy?
In the last 3 years.
Are any of your blood levels abnormal besides AST and ALT?
Have you had a ultrasound, CT or MRI? Is your spleen enlarged (splenomegaly).
These are all indications of cirrhosis. A doctor that is familiar with liver disease should be able to determine if you have cirrhosis or not. You should be seeing a liver disease specialist either a gastroenterologist that works at a liver clinic or a hepatologist that works at a liver transplant center. Other doctor are not qualified to treat patients with cirrhosis and its complications such as hepatic encephalopathy (HE).
If you are experiencing the symptoms of hepatic encephalopathy (HE) you should be treated with Lactulose (a drug you drink) to prevent the build up of ammonia and other toxins in your blood.
"Under normal circumstances, ammonia is efficiently detoxified in the liver so that relatively little escapes into the general circulation bathing the brain. However, with advanced liver disease, whether acute or chronic, the detoxification of ammonia and other toxins by the liver fails, and they accumulate in the blood and disturb brain function. This failure results in part from an inadequate mass of normally functioning liver cells (hepatocytes), and also from a propensity of blood to shunt (short circuit) around the liver with advanced liver disease, particularly cirrhosis."
"Fatigue, and at least mild deficits of memory, concentration, and coordination may become apparent. At this stage, common complaints by the patient include:
- “I feel like my head is in the clouds.”
- “I’ll walk into a room and forget why I am there.”
- “I am always tired…but I can’t sleep.”
- “I often forget what to say in mid-sentence.”
- “My boss is telling me that my work is slipping.”
- “My handwriting has changed to scribble,”
- “My hands shake so much, I can’t hold my coffee cup without spilling it.”
Nighttime insomnia is a very common and troublesome symptom associated with hepatic encephalopathy. In fact, patients with encephalopathy may ultimately sleep more during the day, with fitful naps, than at night, and this “day-night reversal” is a hallmark of more advanced hepatic encephalopathy. Family and friends frequently notice a deterioration of the patient’s cognitive function as well as a change in the patient’s personality—with frequent irritability, bouts of anger, and loss of social graces. They may also witness firsthand deterioration of the patient’s driving skills (“He would have run off the road if I hadn't grabbed the wheel!”)."
Please find a specialist who is knowledgeable about advanced liver disease and find out what your best options are for treating your hepatitis C soon.
University of Illinois
Outpatient Care Center
1801 West Taylor
Suite 1-B
Chicago, IL 60612
HEPATOLOGY (LIVER DISEASE)
Our multi-disciplinary approach to treating liver disease provides a system of comprehensive care. Depending on your individual need, UI Hospital has two state-of-the-art facilities to ensure a consistent, cohesive, quality of care for both inpatient and outpatient services.
The team of expert physicians at The Walter Payton Liver Center (inpatient care) and
Bobbie and Marvin Fink Family Liver Clinic (outpatient care) plan to meet their goal of finding a cure for liver disease by 2020.
All liver disease patients begin their care at the Fink Clinic, with the Payton Center providing specialized treatment. Parallel with a focus on unique or advanced diseases, physicians, and primary nurses ensure that each patient receives personalized care. The goal is to provide a consistent level of services and improved quality of life for liver patients and their families.
To request an appointment, please call 866.600.CARE
Good luck.
Hector
Despite what your doctor says, and you treated before, then next treatment to be available treatment with Sofosbuvir in early 2014 is not for patients like you. Assuming you are genotype 1.
The treatment that should be available in early 2014. For genotype 1 patients, Gilead's new treatment, (peg-interferon, ribavirin and sofosbuvir) is ONLY FOR TREATMENT NAIVE patients as ActingBrandNew pointed out.
" The data submitted in this NDA support the use of ... for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-NAIVE patients with genotype 1, 4, 5 and 6 HCV infection. "
That means it is not for patients who have treated before. If you treated before with peg-interferon and ribavirin (although this combo was not available in the late nineties) you will have to wait for the next generation of treatment which will be all oral drugs without peg-interferon.
Ammonia?
It is very rare to have high ammonia levels caused by liver disease without being stage 4 (cirrhosis).
When was the last time you had a biopsy?
In the last 3 years.
Are any of your blood levels abnormal besides AST and ALT?
Have you had a ultrasound, CT or MRI? Is your spleen enlarged (splenomegaly).
These are all indications of cirrhosis. A doctor that is familiar with liver disease should be able to determine if you have cirrhosis or not. You should be seeing a liver disease specialist either a gastroenterologist that works at a liver clinic or a hepatologist that works at a liver transplant center. Other doctor are not qualified to treat patients with cirrhosis and its complications such as hepatic encephalopathy (HE).
If you are experiencing the symptoms of hepatic encephalopathy (HE) you should be treated with Lactulose (a drug you drink) to prevent the build up of ammonia and other toxins in your blood.
"Under normal circumstances, ammonia is efficiently detoxified in the liver so that relatively little escapes into the general circulation bathing the brain. However, with advanced liver disease, whether acute or chronic, the detoxification of ammonia and other toxins by the liver fails, and they accumulate in the blood and disturb brain function. This failure results in part from an inadequate mass of normally functioning liver cells (hepatocytes), and also from a propensity of blood to shunt (short circuit) around the liver with advanced liver disease, particularly cirrhosis."
"Fatigue, and at least mild deficits of memory, concentration, and coordination may become apparent. At this stage, common complaints by the patient include:
- “I feel like my head is in the clouds.”
- “I’ll walk into a room and forget why I am there.”
- “I am always tired…but I can’t sleep.”
- “I often forget what to say in mid-sentence.”
- “My boss is telling me that my work is slipping.”
- “My handwriting has changed to scribble,”
- “My hands shake so much, I can’t hold my coffee cup without spilling it.”
Nighttime insomnia is a very common and troublesome symptom associated with hepatic encephalopathy. In fact, patients with encephalopathy may ultimately sleep more during the day, with fitful naps, than at night, and this “day-night reversal” is a hallmark of more advanced hepatic encephalopathy. Family and friends frequently notice a deterioration of the patient’s cognitive function as well as a change in the patient’s personality—with frequent irritability, bouts of anger, and loss of social graces. They may also witness firsthand deterioration of the patient’s driving skills (“He would have run off the road if I hadn't grabbed the wheel!”)."
Please find a specialist who is knowledgeable about advanced liver disease and find out what your best options are for treating your hepatitis C soon.
University of Illinois
Outpatient Care Center
1801 West Taylor
Suite 1-B
Chicago, IL 60612
HEPATOLOGY (LIVER DISEASE)
Our multi-disciplinary approach to treating liver disease provides a system of comprehensive care. Depending on your individual need, UI Hospital has two state-of-the-art facilities to ensure a consistent, cohesive, quality of care for both inpatient and outpatient services.
The team of expert physicians at The Walter Payton Liver Center (inpatient care) and
Bobbie and Marvin Fink Family Liver Clinic (outpatient care) plan to meet their goal of finding a cure for liver disease by 2020.
All liver disease patients begin their care at the Fink Clinic, with the Payton Center providing specialized treatment. Parallel with a focus on unique or advanced diseases, physicians, and primary nurses ensure that each patient receives personalized care. The goal is to provide a consistent level of services and improved quality of life for liver patients and their families.
To request an appointment, please call 866.600.CARE
Good luck.
Hector
Hi Dee and welcome to the forum. This is a great place to read and ask questions to learn more about your Hep C and treatments that are currently available or may be available in the future.
I agree with those above who have said that you need to be seen by a hepatologist. Yes, you're right, there are four stages of liver fibrosis (scarring), with the fourth stage being Cirrhosis. The best way to know the health of your liver is to have a biopsy (relatively painless and relatively risk free) so that a hepatologist can assess exactly what stage of liver damage you have. You already know you are at least stage 3, which means that you have bridging fibrosis or scar tissue that is connected. You may actually be stage 4, which means that the bridging fibrosis is changing the structure of your liver. When the structure of the liver begins to change, the liver begins to lose it's ability to function properly to filter out toxins and to process foods. As this progresses, ammonia levels may build up and begin to cause some cognitive problems such as described above.
There is no way for any of us to know whether you are actually stage 3 or actually stage 4 as moving from one stage to another is a transition. Again, only a hepatologist should care for a person who is stage 4, as only a hepatologist has the specialized training needed to monitor the care of a person with Cirrhosis.
You asked about Genotypes. As mentioned above, knowing your genotype guides your treatment. If you are genotype 1 and if you are stage 3 or stage 4, it is important for you to treat your Hep C now, and not wait for new medications that may be approved in the future. As mentioned above, if you are genotype 1, the new medication that is being considered for FDA approval will still need to be combined with Interferon and Ribavirin anyway.
I can't really speak to cure rates and trials, other than to reiterate that if you are genotype 1, this is the best time in history for you to try to treat. I would not advise looking into a trial, because there are so many factors to consider before joining a trial: what is the drug?, what is the purpose of the trial?, will I know what drug I was taking?, will I be able to treat later if the trial drug doesn't work or I get the placebo?, etc., etc. Whether you are stage 3 or stage 4, you and your doctor will want to treat you as if you are stage 4. That is another reason why you should see a hepatologist. If you have high ammonia levels, and if you are at least stage 3, possibly stage 4, find a research based university hospital/medical center near you with hepatologists and try to be seen as soon as possible.
Don't consider waiting for new medications and don't consider joining a trial unless a hepatologist advises you to do one of those two things. Otherwise treat now with currently approved meds if a hepatologist advises you too. You don't want to wait too long and then find that your liver is not healthy enough to undergo currently approved Hep C treatments and that new meds may take longer than anticipated and require Interferon and Ribavirin for G1 anyway.
Best wishes, and keep us posted.
Advocate1955
I agree with those above who have said that you need to be seen by a hepatologist. Yes, you're right, there are four stages of liver fibrosis (scarring), with the fourth stage being Cirrhosis. The best way to know the health of your liver is to have a biopsy (relatively painless and relatively risk free) so that a hepatologist can assess exactly what stage of liver damage you have. You already know you are at least stage 3, which means that you have bridging fibrosis or scar tissue that is connected. You may actually be stage 4, which means that the bridging fibrosis is changing the structure of your liver. When the structure of the liver begins to change, the liver begins to lose it's ability to function properly to filter out toxins and to process foods. As this progresses, ammonia levels may build up and begin to cause some cognitive problems such as described above.
There is no way for any of us to know whether you are actually stage 3 or actually stage 4 as moving from one stage to another is a transition. Again, only a hepatologist should care for a person who is stage 4, as only a hepatologist has the specialized training needed to monitor the care of a person with Cirrhosis.
You asked about Genotypes. As mentioned above, knowing your genotype guides your treatment. If you are genotype 1 and if you are stage 3 or stage 4, it is important for you to treat your Hep C now, and not wait for new medications that may be approved in the future. As mentioned above, if you are genotype 1, the new medication that is being considered for FDA approval will still need to be combined with Interferon and Ribavirin anyway.
I can't really speak to cure rates and trials, other than to reiterate that if you are genotype 1, this is the best time in history for you to try to treat. I would not advise looking into a trial, because there are so many factors to consider before joining a trial: what is the drug?, what is the purpose of the trial?, will I know what drug I was taking?, will I be able to treat later if the trial drug doesn't work or I get the placebo?, etc., etc. Whether you are stage 3 or stage 4, you and your doctor will want to treat you as if you are stage 4. That is another reason why you should see a hepatologist. If you have high ammonia levels, and if you are at least stage 3, possibly stage 4, find a research based university hospital/medical center near you with hepatologists and try to be seen as soon as possible.
Don't consider waiting for new medications and don't consider joining a trial unless a hepatologist advises you to do one of those two things. Otherwise treat now with currently approved meds if a hepatologist advises you too. You don't want to wait too long and then find that your liver is not healthy enough to undergo currently approved Hep C treatments and that new meds may take longer than anticipated and require Interferon and Ribavirin for G1 anyway.
Best wishes, and keep us posted.
Advocate1955
I think Pooh gave you great advice, seek out an experienced hepatologist.
I had end stage liver disease and hepatic encephalopathy, which was caused from my liver condition which caused high ammonia levels.
If you have ESLD already, treatment may not be an option other than in a clinical setting.
There are some simple things you can do now. Stop eating all red meat. Red meat increases ammonia levels. Avoid processed food and try to limit your intake of salt. Read labels, stay away from additives and sodium.
The best diet for anyone with ESLD is as organic and freshly prepared food as possible. You do need protein. Get it from chicken, fish, eggs and organic tofu ( non-organic soy products often are GMO foods, nothing anyone with a compromised liver should be eating).
I invested in a juicer and made beet juice with ginger. I drank lots of smoothies with flax seed meal added to help me keep my weight up.
( Your liver is a filter. It filters everything you eat and breath. Its' easier for the diseased liver to function if it doesn't have to filter out pesticides, additives, etc.)
Keep doing gentle exercise, walking, swimming, etc.
Good luck !
I had end stage liver disease and hepatic encephalopathy, which was caused from my liver condition which caused high ammonia levels.
If you have ESLD already, treatment may not be an option other than in a clinical setting.
There are some simple things you can do now. Stop eating all red meat. Red meat increases ammonia levels. Avoid processed food and try to limit your intake of salt. Read labels, stay away from additives and sodium.
The best diet for anyone with ESLD is as organic and freshly prepared food as possible. You do need protein. Get it from chicken, fish, eggs and organic tofu ( non-organic soy products often are GMO foods, nothing anyone with a compromised liver should be eating).
I invested in a juicer and made beet juice with ginger. I drank lots of smoothies with flax seed meal added to help me keep my weight up.
( Your liver is a filter. It filters everything you eat and breath. Its' easier for the diseased liver to function if it doesn't have to filter out pesticides, additives, etc.)
Keep doing gentle exercise, walking, swimming, etc.
Good luck !
Welcome here, I agree about looking into treatment. For genotype 1 the key word for now is treatment naïve and your not.
"and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection. "
"and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection. "
Welcome to the forum.
I would encourage you to make an appointment with a Hepatologist who is affiliated with a large university affiliated medical center, preferably a liver transplant center. A Hepatologist is (usually) a gastroenterologist who specializes in liver diseases. If you have high blood ammonia levels and if you have "fog"- confusion, forgetfulness, etc. " then you need to see a competent Hepatologist ASAP.
You don't say how the doctor diagnosed Stage 3 liver fibrosis. Did you have a biopsy? If not, it would probably be advisable to have one. A Hepatologist will probably order one. I ask because your symptoms (fog, confusion, memory problems) MAY indicate that your liver disease has advanced further than Stage 3. Of course those symptoms could be from something else, but since you do know that you have Hepatitis C and you do know that you have liver disease, if I were you, I would want to know if my liver disease had advanced to Stage 4.
I also feel that you should seek treatment from a competent Hepatologist ASAP. I agree that, given your liver fibrosis stage and your symptoms, it is NOT a good idea to wait to treat. If I was you I would make an appointment ASAP with a Hepatologist who is affiliated with a large university affiliated medical center, preferably a liver transplant center.
It is better to treat before one develops advanced fibrosis because the cure rate is higher for those with less fibrosis. In addition, treatment can be more difficult (in terms of complications) when one has advanced liver disease.
This forum is a great place for support and information. Just post any questions and we will respond as well as we can. In the meantime, please do seek the care of a Hepatologist. You are not far from Chicago. Perhaps you could get an appointment with a Hepatologist at the University of Chicago.
I would encourage you to make an appointment with a Hepatologist who is affiliated with a large university affiliated medical center, preferably a liver transplant center. A Hepatologist is (usually) a gastroenterologist who specializes in liver diseases. If you have high blood ammonia levels and if you have "fog"- confusion, forgetfulness, etc. " then you need to see a competent Hepatologist ASAP.
You don't say how the doctor diagnosed Stage 3 liver fibrosis. Did you have a biopsy? If not, it would probably be advisable to have one. A Hepatologist will probably order one. I ask because your symptoms (fog, confusion, memory problems) MAY indicate that your liver disease has advanced further than Stage 3. Of course those symptoms could be from something else, but since you do know that you have Hepatitis C and you do know that you have liver disease, if I were you, I would want to know if my liver disease had advanced to Stage 4.
I also feel that you should seek treatment from a competent Hepatologist ASAP. I agree that, given your liver fibrosis stage and your symptoms, it is NOT a good idea to wait to treat. If I was you I would make an appointment ASAP with a Hepatologist who is affiliated with a large university affiliated medical center, preferably a liver transplant center.
It is better to treat before one develops advanced fibrosis because the cure rate is higher for those with less fibrosis. In addition, treatment can be more difficult (in terms of complications) when one has advanced liver disease.
This forum is a great place for support and information. Just post any questions and we will respond as well as we can. In the meantime, please do seek the care of a Hepatologist. You are not far from Chicago. Perhaps you could get an appointment with a Hepatologist at the University of Chicago.
If I were in your shoes I would be uncomfortable about waiting even six months to start treating, UNLESS that is being recommended by a very good hepatologist. Drugs on the verge of approval have frequently been delayed for relatively obscure reasons and I wouldn't want to gamble with something this important. Are you seeing a good hepatologist? What is he/she recommending?
I agree that you should seek out one of the treatments that are available today instead of waiting for the new drugs. You mentioned that you are a Genotype 1 and it is my understanding that when and if Sofosbuvir (Gileads new once-daily oral nucleotide analogue) is approved, a Genotype one will still have to take it in combo with Interferon and Ribavirin. It will only be all oral for a genotype 2/3. Yes, there are all orals in the pipeline but nobody can predict when they will be available and with you being a stage 3, there's no time like the present.
" The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection. "
http://www.gilead.com/news/press-releases/2013/4/gilead-submits-new-drug-application-to-us-fda-for-sofosbuvir-for-the-treatment-of-hepatitis-c
" The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection. "
http://www.gilead.com/news/press-releases/2013/4/gilead-submits-new-drug-application-to-us-fda-for-sofosbuvir-for-the-treatment-of-hepatitis-c
Hi Dee..
Elevated amonia levels are very often a sign that in HCV patients the liver "basically " may not be working efficiantly and not able to eliminate this toxin from the body.
You did not state what your levels are however normal values are I believe in the 15-45 mcg/dl range . I will re-check that.
Did your doctor talk to you about meds avail.to control this and has there been signs or symptoms of " hepatic encephalopathy" (below)
"ammonia levels rise when there are large amounts of protein being catabolized and the liver is unable for some reason to convert it into urea so it can be excreted through the kidneys. anything that interferes with the breakdown of ammonia in the system will increase serum levels. that includes such conditions as:
•hepatic encephalopathy
•hepatic coma
•hepatocellular disease
•portal hypertension
•severe heart failure with congestive hepatomegaly
•gi bleeding and/or obstruction with mild liver disease
•erythroblastosis fetalis of the newborn
•reye syndrome
•asparagine intoxication
•a genetic metabolic disorder of the urea cycle"
As far as waiting for the new treatment to be approved:
No one knows yet when any newer treatment other than the one currently avail will be approved.It at this point is specul;ation.
I would advise strongly that you seek out one of the treatments that "ARE "approved given you have at least ST 3 fibrosis and possibly worse given when the latest assesent of damage was done
The above tx. I mentioned are having anywhere from 45--92 % success rates and the variability is dependant on many factors . and condition of your liver is one of those as well what your classification on your last response was to Peg/Riba.(partial ,.null ,relapser etc)
Good luck ..please keep us informed and welcome...
Will
Elevated amonia levels are very often a sign that in HCV patients the liver "basically " may not be working efficiantly and not able to eliminate this toxin from the body.
You did not state what your levels are however normal values are I believe in the 15-45 mcg/dl range . I will re-check that.
Did your doctor talk to you about meds avail.to control this and has there been signs or symptoms of " hepatic encephalopathy" (below)
"ammonia levels rise when there are large amounts of protein being catabolized and the liver is unable for some reason to convert it into urea so it can be excreted through the kidneys. anything that interferes with the breakdown of ammonia in the system will increase serum levels. that includes such conditions as:
•hepatic encephalopathy
•hepatic coma
•hepatocellular disease
•portal hypertension
•severe heart failure with congestive hepatomegaly
•gi bleeding and/or obstruction with mild liver disease
•erythroblastosis fetalis of the newborn
•reye syndrome
•asparagine intoxication
•a genetic metabolic disorder of the urea cycle"
As far as waiting for the new treatment to be approved:
No one knows yet when any newer treatment other than the one currently avail will be approved.It at this point is specul;ation.
I would advise strongly that you seek out one of the treatments that "ARE "approved given you have at least ST 3 fibrosis and possibly worse given when the latest assesent of damage was done
The above tx. I mentioned are having anywhere from 45--92 % success rates and the variability is dependant on many factors . and condition of your liver is one of those as well what your classification on your last response was to Peg/Riba.(partial ,.null ,relapser etc)
Good luck ..please keep us informed and welcome...
Will
Hi Dee,
The main reason (among others) of finding your genotype out is that it will determine your course of treatment most likely. Today, G1's have more options and higher cure rates than when you went through treatment. But as my good friend BoceprevirGal mentioned above, the new (non-interferon) drugs are literally at the door step of being approved by the FDA. And available for clinical trials NOW. The good news about these drugs is that their cure rates for all genotypes is 90%+...I was just seeing my doctor at the Cleveland Clinic and she said the new drugs WILL be available next year. One being a drug that had a 100% efficacy rate for all participants. And no grueling side effects like the ones you experienced on the interferon :)
But I also agree with BoceprevirGal that you should immediately seek treatment. I am sure with your current state of health that you would be immediately accepted to a trial somewhere. Just be good to your body right now. Eat healthy, don't drink or smoke cigs, go for some walks and get some exercise....Now is the time to get this done. But try not to worry, the medical field is making miraculous advances. Just a few weeks ago doctors successfully grew a piece of a human liver in a mouse. They said within in the decade we'll be able to grow organs for people. But even at your age your liver would try to heal itself and regenerate. Getting rid of the virus for even a short period of time would be extremely beneficial to your liver.
The main reason (among others) of finding your genotype out is that it will determine your course of treatment most likely. Today, G1's have more options and higher cure rates than when you went through treatment. But as my good friend BoceprevirGal mentioned above, the new (non-interferon) drugs are literally at the door step of being approved by the FDA. And available for clinical trials NOW. The good news about these drugs is that their cure rates for all genotypes is 90%+...I was just seeing my doctor at the Cleveland Clinic and she said the new drugs WILL be available next year. One being a drug that had a 100% efficacy rate for all participants. And no grueling side effects like the ones you experienced on the interferon :)
But I also agree with BoceprevirGal that you should immediately seek treatment. I am sure with your current state of health that you would be immediately accepted to a trial somewhere. Just be good to your body right now. Eat healthy, don't drink or smoke cigs, go for some walks and get some exercise....Now is the time to get this done. But try not to worry, the medical field is making miraculous advances. Just a few weeks ago doctors successfully grew a piece of a human liver in a mouse. They said within in the decade we'll be able to grow organs for people. But even at your age your liver would try to heal itself and regenerate. Getting rid of the virus for even a short period of time would be extremely beneficial to your liver.
Thank you so much for answering me. I do have a Dr. and have been holding off on treatment waiting for this new one to get approved. I was a non-responder to ribavirin and interferon back in the mid to late 90's. After that nightmare, I couldn't see starting the meds they have now, when the new one is supposed to be way easier on the side effects.
I haven't kept up with the Hep C community in a very long time. Thank God I knew where to turn, to you guys online, when her tone of voice, from the Dr.'s office, scared the baheebies out of me.
Oh, I think I'm genotype 1, but not sure - memory n all. How important are the genotypes?
I haven't kept up with the Hep C community in a very long time. Thank God I knew where to turn, to you guys online, when her tone of voice, from the Dr.'s office, scared the baheebies out of me.
Oh, I think I'm genotype 1, but not sure - memory n all. How important are the genotypes?
Yes, it is time for you to get Treated, do you know what genotype you are? There is a new med being approved hopefully by Dec 2013, called Sofosbuvir. Find yourself a Doctor that treats Hep C, and start setting things up.
If you let it go too long, it is harder to cure,at stage 4. Even if you end up having to have a Liver Transplant, you will need to get rid of the Hep C first, because even with a new liver, within months after the transplant, the virus comes back, and causes cirrhosis to happen again, only much faster...within a five yr span, so...Treatment is the thing to do~
If you let it go too long, it is harder to cure,at stage 4. Even if you end up having to have a Liver Transplant, you will need to get rid of the Hep C first, because even with a new liver, within months after the transplant, the virus comes back, and causes cirrhosis to happen again, only much faster...within a five yr span, so...Treatment is the thing to do~
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