Aa
Cirrhosis of the liver
Is there anyone here who is suffering fromt this disease? If so, did you find help in rehabilitation? I will tell my own story after I know that I am in the right place.
Some suggestions to help "be in charge" or your tx:
If you are getting prescriptions from more than one doctor, it may help to get them filled at one pharmacy or Rx mail-service. The pharmacy will keep a record of your Rx's, and the computer program should spit out any bad interactions.
Also, read those simplified Patient Info sheets for each med from the pharmacist! Ask for the inserts from the original packaging, too, if you want to do more heavy reading.
These are good to keep in your Tx Folder, along with copies of all lab results; notes about your side-effects and any changes in routine; notes on doctor's visits; and questions to ask the doctor/nurse. You can also print out good information from the web and add it; and reserve a section for jokes and inspirational messages to brighten your day.
A calendar or counter where you physically move or cross out something each day, each shot... can be satisfying, can help keep count, and can help focus you on the progress you are making.
I'm still learning a lot about tx, especially on this forum.
Maj Neni
If you are getting prescriptions from more than one doctor, it may help to get them filled at one pharmacy or Rx mail-service. The pharmacy will keep a record of your Rx's, and the computer program should spit out any bad interactions.
Also, read those simplified Patient Info sheets for each med from the pharmacist! Ask for the inserts from the original packaging, too, if you want to do more heavy reading.
These are good to keep in your Tx Folder, along with copies of all lab results; notes about your side-effects and any changes in routine; notes on doctor's visits; and questions to ask the doctor/nurse. You can also print out good information from the web and add it; and reserve a section for jokes and inspirational messages to brighten your day.
A calendar or counter where you physically move or cross out something each day, each shot... can be satisfying, can help keep count, and can help focus you on the progress you are making.
I'm still learning a lot about tx, especially on this forum.
Maj Neni
thanks so much for the info. i think i better get a different primary. it sounds like it would be nice to have the support. i'm scared to death of the sides and am having a hard time wanting to start. i'm afraid they won't take care of them. And i'll just sit and suffer. BLAH! THANKS AGAIN SANDI
Hi there Sablerae,
If they are cancer sore, buttermilk will help. It reduces the acidity of your system. It is an old-time "cure" that seems to help. If it does not work, at least you have had your calcium for the day. LOL!
Luv ya,
Shebee
Let me know if you try it.
If they are cancer sore, buttermilk will help. It reduces the acidity of your system. It is an old-time "cure" that seems to help. If it does not work, at least you have had your calcium for the day. LOL!
Luv ya,
Shebee
Let me know if you try it.
Thanks, Magnum.
I know that several major studies are going on with the protease inhibitors, and there is keen competition to be first on the market. It is reminiscent of the PegIntron/Pegasys introductions; I'm grateful we have both those meds now. Dr.Gale/UT leads one major group, and B.I.in Germany represents another on the leading edge w/protease inhibitor studies.
They can't guarantee a VL=0 from the studies yet, as there are no tests to determine VL=0. I guess the Quantasure (have I got this right, Galen?) and Quest's Heptimax are the most sensitive PCR's out there, going down to 2 and 5 I.U./mL of blood, but they don't go to absolute zero. Thus there is a chance that a few very hardy "Super Darwinian Kings of Evolution*" viruses might survive and start replicating after the drugs are stopped.
(*I don't remember who introduced that phrase here... but thanks)
That's why the 6 mo. post tx test is the diploma for SVR, because relapse usually happens within a month or two.
The way I see it, an interferon combo tx will still be used to mop up, perhaps of shorter duration and with smaller dosages. This is one reason why there need to be further studies to refine dosing, duration, and criteria/tests for the new protocols to come. May they come soon.
Maj Neni
I know that several major studies are going on with the protease inhibitors, and there is keen competition to be first on the market. It is reminiscent of the PegIntron/Pegasys introductions; I'm grateful we have both those meds now. Dr.Gale/UT leads one major group, and B.I.in Germany represents another on the leading edge w/protease inhibitor studies.
They can't guarantee a VL=0 from the studies yet, as there are no tests to determine VL=0. I guess the Quantasure (have I got this right, Galen?) and Quest's Heptimax are the most sensitive PCR's out there, going down to 2 and 5 I.U./mL of blood, but they don't go to absolute zero. Thus there is a chance that a few very hardy "Super Darwinian Kings of Evolution*" viruses might survive and start replicating after the drugs are stopped.
(*I don't remember who introduced that phrase here... but thanks)
That's why the 6 mo. post tx test is the diploma for SVR, because relapse usually happens within a month or two.
The way I see it, an interferon combo tx will still be used to mop up, perhaps of shorter duration and with smaller dosages. This is one reason why there need to be further studies to refine dosing, duration, and criteria/tests for the new protocols to come. May they come soon.
Maj Neni
Some of the newer folks here seem to be taking aspirin during tx. Many studies have shown aspirin to negatively affect platelet production. Not a good idea along with interferon and riba which do their own number on platelets. Stick with Tyelenol of ibuprofen as directed by your doctor, folks.
Hi, Magnum,
When you read about these studies, did they involve just a few days of protease inhibitors, or did the patients then continue with a course of interferon based therapy?
Some of the early trials (B.I. last year) showed promise in super rapidly knocking the viral load way down (we have no test that measures down to VL=0, as far as I know); those patients were not taking interferon tx; when the Protease Inhibitors were stopped, folks got their starting viral load back in about a week.
If you have any virus left, unopposed, it will double every couple of hours. That is why relapses happen so fast after tx is stopped and the drugs drop below therapeutic levels. Within a week, you can be back at whatever VL your body could handle.
So if you know of anything coming down the pike that doesn't involve (pegylated) interferon based tx, please post about it. From where I'm reading, it looks like everything for the foreseeable future will involve interferon, and probably ribavirin. If we're lucky, Protease Inhibitors, etc. will shorten the duration of tx and improve the SVR-odds for all genotypes.
Maj Neni
When you read about these studies, did they involve just a few days of protease inhibitors, or did the patients then continue with a course of interferon based therapy?
Some of the early trials (B.I. last year) showed promise in super rapidly knocking the viral load way down (we have no test that measures down to VL=0, as far as I know); those patients were not taking interferon tx; when the Protease Inhibitors were stopped, folks got their starting viral load back in about a week.
If you have any virus left, unopposed, it will double every couple of hours. That is why relapses happen so fast after tx is stopped and the drugs drop below therapeutic levels. Within a week, you can be back at whatever VL your body could handle.
So if you know of anything coming down the pike that doesn't involve (pegylated) interferon based tx, please post about it. From where I'm reading, it looks like everything for the foreseeable future will involve interferon, and probably ribavirin. If we're lucky, Protease Inhibitors, etc. will shorten the duration of tx and improve the SVR-odds for all genotypes.
Maj Neni
Protease inhibitors disrupt hepatitis C replication
BY LAURA BEIL
The Dallas Morning News
DALLAS - (KRT) - Texas scientists have discovered how the hepatitis C virus can disarm the body's defenses, allowing it to become a permanent occupant inside cells.
Laboratory experiments published online Thursday in the journal ScienceExpress also suggested that drugs already being tested in patients could restore the crippled immune response, allowing a cell to rid itself of virus within days.
The discovery offers a blueprint for new treatments of the deadly infection.
Hepatitis C, which is most commonly spread through contaminated blood or IV drug use, often leads to a persistent, chronic infection. It is the leading cause of liver transplants in the United States. Under the best circumstances, current drugs - which must be taken for months, and come with sometimes brutal side effects - only cure about half the people who try them. An estimated 3.9 million Americans have been infected.
"There's a desperate need for new, more effective drugs to fight hepatitis C," said Michael Gale, a researcher with the University of Texas Southwestern Medical Center at Dallas. Gale and colleagues from the University of Texas Medical Branch at Galveston conducted the new experiments.
The research team discovered that the hepatitis C virus drops a kind of precision bomb once it invades a cell, releasing an enzyme that disables a molecule called interferon regulatory factor 3, or IRF-3. Without IRF-3, the cell's immune response stalls. With the immune system no longer around to restrain it, hepatitis C gains free reign of the cell, making copies of itself, and moving on to infect other cells.
But the UT Southwestern scientists were able to restore IRF-3 by exposing the cells to drugs called protease inhibitors. Once the cell was awash in protease inhibitors, the hepatitis C virus was unable to take over. The cell's immune system resurrected, and the virus vanished.
"This is, I think, the weak link in the virus's ability to persist," Gale said.
And pharmaceutical companies are already testing protease inhibitors in small groups of patients, Gale said, so experts should know soon how the drugs fare in patients, not just cells.
A second paper published with Gale's study explains more about how IRF-3 and its team of molecules protect cells. "This is a mechanism that is actually used by many viruses," said John Hiscott of McGill University in Montreal. The fact that protease inhibitors restored IRF-3, he said, has implications for many viral infections beyond hepatitis C.
Hepatitis C experts, meanwhile, are pleased to have a new avenue to pursue. "We found something else that may give us a handle on getting rid of this virus," said Leslye Johnson, who heads research into liver infections at the National Institute of Allergy and Infectious Diseases. If Gale's discovery leads to a better, easier treatment for hepatitis C, she said, "It will be a blessing for the population."
Other UT Southwestern researchers involved in the study were Eileen Foy, Chunfu Wang and Rhea Sumpter.
---
BY LAURA BEIL
The Dallas Morning News
DALLAS - (KRT) - Texas scientists have discovered how the hepatitis C virus can disarm the body's defenses, allowing it to become a permanent occupant inside cells.
Laboratory experiments published online Thursday in the journal ScienceExpress also suggested that drugs already being tested in patients could restore the crippled immune response, allowing a cell to rid itself of virus within days.
The discovery offers a blueprint for new treatments of the deadly infection.
Hepatitis C, which is most commonly spread through contaminated blood or IV drug use, often leads to a persistent, chronic infection. It is the leading cause of liver transplants in the United States. Under the best circumstances, current drugs - which must be taken for months, and come with sometimes brutal side effects - only cure about half the people who try them. An estimated 3.9 million Americans have been infected.
"There's a desperate need for new, more effective drugs to fight hepatitis C," said Michael Gale, a researcher with the University of Texas Southwestern Medical Center at Dallas. Gale and colleagues from the University of Texas Medical Branch at Galveston conducted the new experiments.
The research team discovered that the hepatitis C virus drops a kind of precision bomb once it invades a cell, releasing an enzyme that disables a molecule called interferon regulatory factor 3, or IRF-3. Without IRF-3, the cell's immune response stalls. With the immune system no longer around to restrain it, hepatitis C gains free reign of the cell, making copies of itself, and moving on to infect other cells.
But the UT Southwestern scientists were able to restore IRF-3 by exposing the cells to drugs called protease inhibitors. Once the cell was awash in protease inhibitors, the hepatitis C virus was unable to take over. The cell's immune system resurrected, and the virus vanished.
"This is, I think, the weak link in the virus's ability to persist," Gale said.
And pharmaceutical companies are already testing protease inhibitors in small groups of patients, Gale said, so experts should know soon how the drugs fare in patients, not just cells.
A second paper published with Gale's study explains more about how IRF-3 and its team of molecules protect cells. "This is a mechanism that is actually used by many viruses," said John Hiscott of McGill University in Montreal. The fact that protease inhibitors restored IRF-3, he said, has implications for many viral infections beyond hepatitis C.
Hepatitis C experts, meanwhile, are pleased to have a new avenue to pursue. "We found something else that may give us a handle on getting rid of this virus," said Leslye Johnson, who heads research into liver infections at the National Institute of Allergy and Infectious Diseases. If Gale's discovery leads to a better, easier treatment for hepatitis C, she said, "It will be a blessing for the population."
Other UT Southwestern researchers involved in the study were Eileen Foy, Chunfu Wang and Rhea Sumpter.
---
Would love to hear more about this new treatment coming out that kills the virus in 3 days!!! Can you attach the links or give me information on when this should be available in the US for treatment? Who do I talk to about getting into a trial?? Any information would be great!
As most of you are aware, my 15 year old daughter has stage 4 and has not responded to any treatment so far.. Contracted from me at birth. Currently on daily infergen, don't think she is responding to this either...Already tried Pegasys and Peg Intron with little success. We are thinking of adding zadaxin to this or Pegasys next. I am going crazy with worry. Don't know how I am coping any more...She just dosn't get a break...I need to find something that will work...Her albumin is slipping below normal now which probably means her liver took a turn for the worse even with this past 52 weeks of treatments. Any information you could provide about new treatments and when they will be available would be great.
Thank you
Jodi
As most of you are aware, my 15 year old daughter has stage 4 and has not responded to any treatment so far.. Contracted from me at birth. Currently on daily infergen, don't think she is responding to this either...Already tried Pegasys and Peg Intron with little success. We are thinking of adding zadaxin to this or Pegasys next. I am going crazy with worry. Don't know how I am coping any more...She just dosn't get a break...I need to find something that will work...Her albumin is slipping below normal now which probably means her liver took a turn for the worse even with this past 52 weeks of treatments. Any information you could provide about new treatments and when they will be available would be great.
Thank you
Jodi
Great news. It makes it so much easier to go ahead with this s@#*. Stay strong and stay clear. Thanks for posting the news. Mike
Hi,I'm starting tx soon I just got my script from my G.I. He says I'll be getting blood tests every 2 weeks and seeing him every 4 weeks.My primary started me on Welbutrin to help stop smoking months ago. For tx he added Lexapro,Ativan and Vicodin.He seems happy to have a regular costomer. I call these pills my arsonal.
My GI said he could prescripe medications also and he also said I could go to a pych for A.d's. It seems in my case my primary is in charge of my meds.Maybe your GI will be more helpful with scripts Hope you feel well and good luck.
My GI said he could prescripe medications also and he also said I could go to a pych for A.d's. It seems in my case my primary is in charge of my meds.Maybe your GI will be more helpful with scripts Hope you feel well and good luck.
I had a 24yr transfused infection, went into complete liver failure, 9-12-2001, crossed over, came back. 2wks later, tested for hep c. My doc put me in a study that paid for all meds (peg-infr-riba) and I cl@4wks, now SVR 11mo-2b. I'm still ESLD (end stage liver disease) & should be on a transplant list. I'm now 20 mo past my est. death date. And feel great!
I handled all sx w/otc drugs , herbs, nutritional suppliments diet and exercise, meditation and marijuanna. Never really had the riba rage.
Cutting out drinking and other neg habits was never a problem for me. I only had to die once!
My other is opening for ZZ Top next month and I'm so excited to meet Dusty Hill, a very out spoken Hep C survivor. I want to tell him how sharing his story gave me the strenght to see tx thru. Just as Warren Zevon gives me courage to live now.
So, sharing is good. And inspiration comes in many forms.
I handled all sx w/otc drugs , herbs, nutritional suppliments diet and exercise, meditation and marijuanna. Never really had the riba rage.
Cutting out drinking and other neg habits was never a problem for me. I only had to die once!
My other is opening for ZZ Top next month and I'm so excited to meet Dusty Hill, a very out spoken Hep C survivor. I want to tell him how sharing his story gave me the strenght to see tx thru. Just as Warren Zevon gives me courage to live now.
So, sharing is good. And inspiration comes in many forms.
Gatorade was more recommended than water by my gastro. Apparently, too much water washes out certain metabolical needs in the body that Gatorade replenishes. He may have been talking about electrolytes.
Sam-E has helped a lot and he highly recommends being on it. Pricey but effective. Sav-On currently has a 2 for 1 Sam-E by Naturemade. Get the 30 pack double strength, then you only need to take one tab a day. The standard requires 2 tabs a day. Better hurry, sale ends Saturday!
As some of you may know, I'm 1A and I've been through three failed treatments and am currently waiting for the Protease Inhibitors clinical trial to be allowed here in the US by the FDA. It's currently in clinical trials in Germany and Canada.
With this revolutionary treatment, the virus is starved in three days! It's been very successful in lab mice, and the best part is that it hardly has any side effects at all. C'mon FDA!
Magnum
Sam-E has helped a lot and he highly recommends being on it. Pricey but effective. Sav-On currently has a 2 for 1 Sam-E by Naturemade. Get the 30 pack double strength, then you only need to take one tab a day. The standard requires 2 tabs a day. Better hurry, sale ends Saturday!
As some of you may know, I'm 1A and I've been through three failed treatments and am currently waiting for the Protease Inhibitors clinical trial to be allowed here in the US by the FDA. It's currently in clinical trials in Germany and Canada.
With this revolutionary treatment, the virus is starved in three days! It's been very successful in lab mice, and the best part is that it hardly has any side effects at all. C'mon FDA!
Magnum
Thanks for all the nice replies, ya'll are great!!! Power to the 1'ers, the marathon runners/trudgers.
I am new here myself.Diagnosed 8 weeks ago.Genotype 1 grade 2 stage 3.Go to discuss treatment next Friday.I believe this forum is about having others to talk to about this disease(for information or just for support)but anyways feel free to tell your story as none of us are perfect and Im sure we all have stories to tell.I know I do.Got this disease along with 7 others by iv drugs(my first and only time)but that makes me no better or worse than any of the other 7, several of which were heavy drug users.I dont hate them at all(my choice my consequences).Anyway I wish you the best in rehab and in treatment.I'll be praying for you.And as the old song goes"Lean on me,when your not strong.Ill be around when you need somebody to lean on!
Take Care,
Tim in Tenn
Take Care,
Tim in Tenn
What relieving news you have about your viral load testing ! Give yourself a huge pat on the back. This has been a wonderful week for you and other's who are clearing the virus.
You results give all of us alot of strength and encouragement. Thank you !
The mouth sores are common from the tx meds. I haven't had any sores, but my tougne and whole mouth is so very tender. Biotene products have helped me, and was highly suggested by others on this forum. Also, there is some type of 'magic mouthwash' (that is actually the name of it) that the pharmacist can mix up that is really super good ! Also, eat yogurt this is suppose to help with mouth sores and pain. Go back through some of the previoust thread discussions regarding sores and mouth pain. Everyone agrees on the biotene products as well as the magic mouthwash. I don't remember who, but someone knows the 3 ingredients to make the mouthwash and just posted it the other day.
Good luck and POWER to the 1's and everyone !
You results give all of us alot of strength and encouragement. Thank you !
The mouth sores are common from the tx meds. I haven't had any sores, but my tougne and whole mouth is so very tender. Biotene products have helped me, and was highly suggested by others on this forum. Also, there is some type of 'magic mouthwash' (that is actually the name of it) that the pharmacist can mix up that is really super good ! Also, eat yogurt this is suppose to help with mouth sores and pain. Go back through some of the previoust thread discussions regarding sores and mouth pain. Everyone agrees on the biotene products as well as the magic mouthwash. I don't remember who, but someone knows the 3 ingredients to make the mouthwash and just posted it the other day.
Good luck and POWER to the 1's and everyone !
I have taken 5 shots of pegasys. I got a couple of sores in my mouth last week, now I have a mouth full of sores ........awww the pain. I have been gargleing with salt water and my doctor told me to get this spray for your mouth call hurricane. I got it and all it does is numb it for a bit. Does anyone else have the mouth sore problem? What do you do? Does anyone know why we get these sores in the mouth, it is terrible. Can't eat or talk right either.
God Bless
Sablerae
God Bless
Sablerae
Tim,
Hi,I'm Tos356 from Tenn, and wishing you great success with your tx.
I have another friend, Tim from Tn. and he was diagnosed pos. for Hep-C about three months ago. He is also type 1 and looking at 48 mos. He's a couple of weeks ahead of me at 10 now, and doing pretty well after several ruff ones, just like myself. I still haven't been able to return to work full time. Too weak, and generally not feeling very well, but it is getting better, and my liver functions are already much improved according to my lab work. Try to keep a written daily account of what you are feeling during tx., as well as to keep up with what medicines you've taken and when. "Brain Fog" seems to be one of the many common side effects you may expect from these chemicals.
There is another saying in Tn. " If it doesn't kill you it will make you stronger", and even though this is not exactly acceptable in this situation, I still think you must manage to mentally get through the lows, then the highs of feeling better, and of having a healed up liver, will be a wonderful reward that will make it all worth while.
Hang in there man!...let us all know how you're doing.
Hi,I'm Tos356 from Tenn, and wishing you great success with your tx.
I have another friend, Tim from Tn. and he was diagnosed pos. for Hep-C about three months ago. He is also type 1 and looking at 48 mos. He's a couple of weeks ahead of me at 10 now, and doing pretty well after several ruff ones, just like myself. I still haven't been able to return to work full time. Too weak, and generally not feeling very well, but it is getting better, and my liver functions are already much improved according to my lab work. Try to keep a written daily account of what you are feeling during tx., as well as to keep up with what medicines you've taken and when. "Brain Fog" seems to be one of the many common side effects you may expect from these chemicals.
There is another saying in Tn. " If it doesn't kill you it will make you stronger", and even though this is not exactly acceptable in this situation, I still think you must manage to mentally get through the lows, then the highs of feeling better, and of having a healed up liver, will be a wonderful reward that will make it all worth while.
Hang in there man!...let us all know how you're doing.
Tim,
I forgot one very important thing. Keep a source of cold drinking water nearby all the time. It's going to become your best friend. I didn't know I liked it so much. I'm up to about two gallons a day. If you don't your mouth rappidly gets very dry. There may be some other products posted that will help, but do make the water a top priority. Never leave home without it, or get to far away from a rest room. All that water has to go somewhere...and it carries those dying Hep-C virus out of your system. You'll do fine. Stay positive.
Tos356
I forgot one very important thing. Keep a source of cold drinking water nearby all the time. It's going to become your best friend. I didn't know I liked it so much. I'm up to about two gallons a day. If you don't your mouth rappidly gets very dry. There may be some other products posted that will help, but do make the water a top priority. Never leave home without it, or get to far away from a rest room. All that water has to go somewhere...and it carries those dying Hep-C virus out of your system. You'll do fine. Stay positive.
Tos356
Thanks for the info.Water shouldn't be a problem(lol)cause I work in a water treatment plant.Hopefully tx won't knock me out of work.Talked it over with my employer and he said not to worry even if I do have to miss some work.Got my bx results last week and will be seeing the doc at Vanderbilt to discuss my tx next Friday.I'm not afraid of the tx but hope I don't alienate my freinds and family.Been reading a lot about the riba rages.I asked them all ahead of time to forgive me if I turn into a real pain.With any luck maybe I won't have that problem.Was wondering,do they do a physical workup to check for any problems that might interfere with tx.Have had some problems in the past few years(asthma,bronchitis,etc)I guess I can ask that when I see the doc.I'm wondering how much of these probs I've had might be related to the hepc.Anyway thanks for the advice and take care. Tim
Hi Sandy,
I am 3a, also, and in my eighth week on Pegasys. The drug manufacturer gave my liver doctor a lab test schedule, running my blood work almost every two weeks with viral load at three months and again at the end of my tx. I guess this will vary from doctor to doctor. I'm having to visit with him in order to get my lab slips, every other time, unless things change.
It really does seem like you have to play a game with the doctors to get relief from the sides. My primary physician ordered Hydrocodone (Loritab) for my aches and pains, but only under the supervision of my Gastrologist. I promised that I would cut the tablet into fourths and take them spareingly. Mostly I have found buffered aspirin, or half the reccomended dose of Tylenol, works well enough to take the edge off. Don't mix the Loritab with the Tylenol! It's already better than 95% Acetaminophen combination formula, and taking it with Tylenol would be going the wrong direction with your liver treatment. I have changed doctors many times over the years in order to find the right ones for me. You may have to do the same. Take it from me, though, they don't like for you to badmouth other doctors to in front of them. My BAD! I guess that's understandable given they are a special breed of people, but every one is unique.
Basically, they strongly support calling the nurse on duty if you experience extraordinary side affects, and Pegasys has a 24hr. hotline. The pharmaceutical company representitive even called me two weeks in and asked if everything was okay. I was impressed. I hope this info. has helped some, even though you still have to do this on your own. There is a lot of wonderful inspiration from good people here. Good luck and God bless! ;)
I am 3a, also, and in my eighth week on Pegasys. The drug manufacturer gave my liver doctor a lab test schedule, running my blood work almost every two weeks with viral load at three months and again at the end of my tx. I guess this will vary from doctor to doctor. I'm having to visit with him in order to get my lab slips, every other time, unless things change.
It really does seem like you have to play a game with the doctors to get relief from the sides. My primary physician ordered Hydrocodone (Loritab) for my aches and pains, but only under the supervision of my Gastrologist. I promised that I would cut the tablet into fourths and take them spareingly. Mostly I have found buffered aspirin, or half the reccomended dose of Tylenol, works well enough to take the edge off. Don't mix the Loritab with the Tylenol! It's already better than 95% Acetaminophen combination formula, and taking it with Tylenol would be going the wrong direction with your liver treatment. I have changed doctors many times over the years in order to find the right ones for me. You may have to do the same. Take it from me, though, they don't like for you to badmouth other doctors to in front of them. My BAD! I guess that's understandable given they are a special breed of people, but every one is unique.
Basically, they strongly support calling the nurse on duty if you experience extraordinary side affects, and Pegasys has a 24hr. hotline. The pharmaceutical company representitive even called me two weeks in and asked if everything was okay. I was impressed. I hope this info. has helped some, even though you still have to do this on your own. There is a lot of wonderful inspiration from good people here. Good luck and God bless! ;)
I have decompensated cirrhosis. Because of both HepC and alot of abuse by alcohol, my liver failed last year. I was in ICU for 7 days then tx. for alcoholism. I have not taken a drink since and through medication and diet, I have been able to have somewhat of a normal life. Next week I will start trying to find a Dr. that will tx. my HCV. New data shows that it can be treated in people w/ cirrhsis, it is even been known to improve liver health enough that some patients no longer need transplants, and even those that have transplants have a lower rate of re-infection. Any questions I can answer about cirrhosis, I will be glad to do so. I hope I can help you. Joni
My primary physican gives me anything that I need for pain or sides but I make sure that he gets a copy of my blood work and he is the one who referred me to my specialist to begin with so it works out well. You may want to consider changing your primary.But you don't want to take to many more drugs than is absolutly necessary. Bringing a copy of your paper work so your doctor knows everything will help. Good luck, some of us were blessed with good, caring doctors I hope that you find one too.
SORRY, I DO NOT KNOW ABOUT THE CHIRHOSIS. I WISH YOU THE BEST.
NEW QUESTION:
I am about to start tx and wondered if your primary physisians deal with treating your side effects from tx or do your liver dr.s give you prescriptions for side effects?
my primary is new to me and does not give out prescriptions without a fight. she has had someone abuse pills. so now it is hard to get anything for any problem i may have. i pulled a muscle last week and it was very painful and i had to go in once and call in 4x before she would o.k. muscle relaxant.i was in alot of pain. she said we don't give out pain killers here we just tell people to take motrin.
i don't understand her bad attitude about meds, but my fear is what if she won't work with me, with my side effects from tx?
also can someone tell me what the schedual for followup appt.s like blood tests ect... after you first start tx. in otherwords how often do you see your GI and how often your primary care. how do they follow up on your saftey from the tx? is there a suggested plan from the drug companies? (i will be on pegysys for 6 mo. or so for type 3a.) THANKS AHEAD, SANDI
NEW QUESTION:
I am about to start tx and wondered if your primary physisians deal with treating your side effects from tx or do your liver dr.s give you prescriptions for side effects?
my primary is new to me and does not give out prescriptions without a fight. she has had someone abuse pills. so now it is hard to get anything for any problem i may have. i pulled a muscle last week and it was very painful and i had to go in once and call in 4x before she would o.k. muscle relaxant.i was in alot of pain. she said we don't give out pain killers here we just tell people to take motrin.
i don't understand her bad attitude about meds, but my fear is what if she won't work with me, with my side effects from tx?
also can someone tell me what the schedual for followup appt.s like blood tests ect... after you first start tx. in otherwords how often do you see your GI and how often your primary care. how do they follow up on your saftey from the tx? is there a suggested plan from the drug companies? (i will be on pegysys for 6 mo. or so for type 3a.) THANKS AHEAD, SANDI
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