Aa
1st post - lots of questions, do Dr's monitor these
I have Genotype 1b, about 7 million load. AST dropped from 77 to 57. ALT dropped from 92 to 70
My biopsy is as follows: Chronis hepatitis, mildly active (grade 2) with portal and septal fibrosis with no definitive cirrhosis (metavir score 3) Comments: the biopsy shows a portal chronic inflammatory infiltrate which extends beyond the limiting plate where there is focal but noticeable hepatocellular damage. Iron stain shows portal and septal fibrosis (bridging) with no definite cirrhosis present.
Not been treated - scared of side effects.
Question 1 - so how bad off do I sound?
Question 2 - has anyone made noticeable improvement using any kind of alternative meds/vitamins/milk thisle?
Question 3 - I have heard how bad the current meds make you feel and some even have lasting affects after treatment ends? Is this the norm?
Question 4 - Do doctors monitor this forum? If not, can someone recommend one that dr's do monitor.
Thanks!
My biopsy is as follows: Chronis hepatitis, mildly active (grade 2) with portal and septal fibrosis with no definitive cirrhosis (metavir score 3) Comments: the biopsy shows a portal chronic inflammatory infiltrate which extends beyond the limiting plate where there is focal but noticeable hepatocellular damage. Iron stain shows portal and septal fibrosis (bridging) with no definite cirrhosis present.
Not been treated - scared of side effects.
Question 1 - so how bad off do I sound?
Question 2 - has anyone made noticeable improvement using any kind of alternative meds/vitamins/milk thisle?
Question 3 - I have heard how bad the current meds make you feel and some even have lasting affects after treatment ends? Is this the norm?
Question 4 - Do doctors monitor this forum? If not, can someone recommend one that dr's do monitor.
Thanks!
I am 1005 agree with Meki. Its the duty of doctor to answer all your question and get you mentaly satisfied and prepared for the treatment. before my first visit to my new doc i was very worried and metally tensed just because of my previous doc who was like that type who doesnt had time for patients and they dont explain the detail. He suggested me the medicine and when i asked him " why this brand , why not the other one or any alternative or what would be the time" he replied" its my job , let me handle my job and i know better what to choose etc etc " i came back with my head down and very tensed. I switched the doc with the advise of my frends and my new doc is a good counseler . he used to listen and answer all the question in such a way and in such a detail that you are mentally satisfied and nothing remain un answered even though i some time ask very silly qustion but i want to know what is and what will be going to be with me n my body coz its my right and fot this m paying to him.
"I keep trying to ask the Dr a question but it's always says "no more questions for the day"
Whoa.
Ask your doctor if he can refer you to someone who has the opportunity and time to answer your questions regarding the reasons you are seeing him.
A doctor is supposed to be able to communicate effectively to his patient.
It's like going to a mechanic and asking what is wrong.
The mechanic replies: "You need to change your oil right away, or this is what could happen."
You say, "what kind of oil and what kind of prices are we talking here?"
He says " don't ask any more questions. Just choose."
How can you effectively choose with the limited information he has provided to you?
You MUST advocate for yourself.
You MUST get informed on your disease --- coming to this forum is an excellent start on that.
YOU MUST stand up and say: I'm paying to have you work WITH me --- which means making sure I understand where to go to find information.. I am paying you to help me choose what to do with my body. I'm paying you to diagnose and render aid - and for you to do it to the best of your ability - as per your hippocratic oath.
YOU MUST make your own decisions --- and you MUST research this information.
He might not know the answers --- a lot of doctors do not.
But you can become informed.
Starting here is a great step.
Meki
Whoa.
Ask your doctor if he can refer you to someone who has the opportunity and time to answer your questions regarding the reasons you are seeing him.
A doctor is supposed to be able to communicate effectively to his patient.
It's like going to a mechanic and asking what is wrong.
The mechanic replies: "You need to change your oil right away, or this is what could happen."
You say, "what kind of oil and what kind of prices are we talking here?"
He says " don't ask any more questions. Just choose."
How can you effectively choose with the limited information he has provided to you?
You MUST advocate for yourself.
You MUST get informed on your disease --- coming to this forum is an excellent start on that.
YOU MUST stand up and say: I'm paying to have you work WITH me --- which means making sure I understand where to go to find information.. I am paying you to help me choose what to do with my body. I'm paying you to diagnose and render aid - and for you to do it to the best of your ability - as per your hippocratic oath.
YOU MUST make your own decisions --- and you MUST research this information.
He might not know the answers --- a lot of doctors do not.
But you can become informed.
Starting here is a great step.
Meki
I can tell you that I tried for almost 20 years to get a dianosis...it's hard to find a good Dr but they are out there. Do research and ask tough questions and don't let them shrug you off... educate yourself and stay on top of the Dr yourself. If your doc looks at you like a deer in the headlights, find another.
I'm sorry, I don't know anything about chrons disease and how it relates to treatment for HCV.
What are you looking for...exactly...Put it into a question and start a new post here...There are so many people here with great knowledge who are very willing to share. You are in great company. I don't know much...I'm new here since last month but I will be happy to share everything that I have learned so far. Stay tuned.
gator
I'm sorry, I don't know anything about chrons disease and how it relates to treatment for HCV.
What are you looking for...exactly...Put it into a question and start a new post here...There are so many people here with great knowledge who are very willing to share. You are in great company. I don't know much...I'm new here since last month but I will be happy to share everything that I have learned so far. Stay tuned.
gator
Switch doctors. Fast. If you aren't comfortable with him right now imagine what it will be like once you are on treatment and have issues to deal with that need immediate attention? Any doctor that refuses to answer your questions isn't a very good doctor and if this guy is how I imagine you're gonna be screwed.
You need to find someone who is UP TO DATE on their journals and knows all the most recent studies who can discuss options with you in a thorough manner. MUCH of this treatment outcome depends on certain choices that we have to make for ourselves.........and I don't know how you are going to be able to do that if he won't pay you any mind.
Ditch him. Fast. I had a doc with great bedside manner but not much UP TO DATE experience in hep so as I learned I gave him the information. Then he sent me to Dr. Jacobson for a second opinion (about extending treatment to 72 weeks) and they got hooked up (and Dr. J let me ask him questions for an HOUR!!!) and now he's a much better doctor and people will have a much better chance at success.
That is the whole goal of doing treatment after all.
You need to find someone who is UP TO DATE on their journals and knows all the most recent studies who can discuss options with you in a thorough manner. MUCH of this treatment outcome depends on certain choices that we have to make for ourselves.........and I don't know how you are going to be able to do that if he won't pay you any mind.
Ditch him. Fast. I had a doc with great bedside manner but not much UP TO DATE experience in hep so as I learned I gave him the information. Then he sent me to Dr. Jacobson for a second opinion (about extending treatment to 72 weeks) and they got hooked up (and Dr. J let me ask him questions for an HOUR!!!) and now he's a much better doctor and people will have a much better chance at success.
That is the whole goal of doing treatment after all.
My Dr is smart, but no bedside manner. It's like here is the success/failure rate info, here is your bloodwork, virus level. I suggest you take the treatment. Feel free to check the internet for more info.
So I didn't get a down-to-earth answer as to how bad I am. The other problem is I have Crohns Disease and he said that the meds can aggravate the intestine too.
I went to your link about endstage but couldn't find what I thought I was looking for, like what to expect "early", midstage, and when you are really feeling sick-I guess "end-stage".
Also, I am feeling fine now except for a dull ache on the right side under the ribcage. Plenty of energy.
I keep trying to ask the Dr a question but it's always says "no more questions for the day"
So I didn't get a down-to-earth answer as to how bad I am. The other problem is I have Crohns Disease and he said that the meds can aggravate the intestine too.
I went to your link about endstage but couldn't find what I thought I was looking for, like what to expect "early", midstage, and when you are really feeling sick-I guess "end-stage".
Also, I am feeling fine now except for a dull ache on the right side under the ribcage. Plenty of energy.
I keep trying to ask the Dr a question but it's always says "no more questions for the day"
"This is a pretty ruff suggestion, but read the symptoms of end stage liver disease and that might help you overcome your fear of the sides"
Excellent advice. Right now you are in pretty much the middle ground area - about half way to cirrhosis but not there yet. Nobody can tell you how long it will/can take you to go from a 2 to a 4. Just because it may have taken 20 years to get to a 2 doesn't mean it will take another 20 years to get to a 4. It could happen in two years or five years or maybe even never.
So you do have reason to begin learning and looking into doing treatment but it's not URGENT that you start it today.
you can't worry about the sides. Most of them are indeed ghastly but they do have medications to take care of the more dangerous ones and while treatment isn't any fun and is a long hard road - it's worth it.
I treated for 72 weeks and have been "cured" for over 18 months now. It was hard but like I said.........worth not going to go through end stage liver disease. I've had two friends die of this disease and it is NOT pretty.
Good luck, learn everything you can and get copies of all of your test results. They will teach you much and become invaluable later on.
Excellent advice. Right now you are in pretty much the middle ground area - about half way to cirrhosis but not there yet. Nobody can tell you how long it will/can take you to go from a 2 to a 4. Just because it may have taken 20 years to get to a 2 doesn't mean it will take another 20 years to get to a 4. It could happen in two years or five years or maybe even never.
So you do have reason to begin learning and looking into doing treatment but it's not URGENT that you start it today.
you can't worry about the sides. Most of them are indeed ghastly but they do have medications to take care of the more dangerous ones and while treatment isn't any fun and is a long hard road - it's worth it.
I treated for 72 weeks and have been "cured" for over 18 months now. It was hard but like I said.........worth not going to go through end stage liver disease. I've had two friends die of this disease and it is NOT pretty.
Good luck, learn everything you can and get copies of all of your test results. They will teach you much and become invaluable later on.
You sound like you are in better shape than I find myself, so to me you are lucky. I agree to talk to your doctor about what shape you are in. I can share my story with you. When I discovered I have HCV I also discovered I have cirrhosis. So of course, I'd tell you to treat before you find yourself in my shape. I will also encourage you to not be afraid of the unknown. You don't know what the sides will be like for you. Everyone is different. I am one of the lucky ones. I am close to 5 months in tx and have not missed a day of work. Yes, I feel tired some of the time and yes, I have felt better in my life but I have not had to give up anything because of tx. I still do all the things I want and enjoy doing. I will say my housekeeping has suffered, but that was never on my list of favorite things to do! :-)
Don't allow your fear of the unknown to paralyze you. This is a pretty ruff suggestion, but read the symptoms of end stage liver disease and that might help you overcome your fear of the sides.
Good luck whatever you decide.
Don't allow your fear of the unknown to paralyze you. This is a pretty ruff suggestion, but read the symptoms of end stage liver disease and that might help you overcome your fear of the sides.
Good luck whatever you decide.
Welcome on this forum. I think u r at the right place to discuss your problems. Regarding your first question , i dont think you sound too bad. but the exact situation can be told by your doc as he has complete range of your medical test.
For question no. 2 , there are alternateive meds, eg, Homeopathic. I have come ton know about Dr Shah of india who is very popular for HCv medication. I have also contaced him and sent him my medical reports but according to him . he can guarantee the decrease in viral load and improvement of ALT, ASt levels but he cant guarantee or claim that your PCR will be undetected after his treatment. To me its not the completion of treatment, as if you have virus in your body, at any time it can start again hurting you. So i dicided not to get treatment from him.
For question no. 3, Current meds have side effcts which are quite variable on different ppl. You will find some person who dont have any SX and some going to die because of this. No one can predict he will this behave with you. I am on second week of my treatment. The only side effect i felt is body temp warming up (paracetamol immediately control it) and mild tiredness in the next morning if i took shot in night or late evening (i have changed the time and will now get the shot in noon to have tiredness period during my sleep) and nothing else. My doc told me if you r young (i m 30 years) and have mild disease then sx will be most probably be low. You can discuss with your doc, if you can wait for the new improved meds (no one know how long will it take , may be 4-5 years).But keep one thing in your mind, every day of HCV in your body means further destruction.
For question no. 2 , there are alternateive meds, eg, Homeopathic. I have come ton know about Dr Shah of india who is very popular for HCv medication. I have also contaced him and sent him my medical reports but according to him . he can guarantee the decrease in viral load and improvement of ALT, ASt levels but he cant guarantee or claim that your PCR will be undetected after his treatment. To me its not the completion of treatment, as if you have virus in your body, at any time it can start again hurting you. So i dicided not to get treatment from him.
For question no. 3, Current meds have side effcts which are quite variable on different ppl. You will find some person who dont have any SX and some going to die because of this. No one can predict he will this behave with you. I am on second week of my treatment. The only side effect i felt is body temp warming up (paracetamol immediately control it) and mild tiredness in the next morning if i took shot in night or late evening (i have changed the time and will now get the shot in noon to have tiredness period during my sleep) and nothing else. My doc told me if you r young (i m 30 years) and have mild disease then sx will be most probably be low. You can discuss with your doc, if you can wait for the new improved meds (no one know how long will it take , may be 4-5 years).But keep one thing in your mind, every day of HCV in your body means further destruction.
Gator has given you all information that you need. the only thing i can add is that i am treating, on week 28 i was UND at week 12, i do have some sides, Educate yourself by asking questions, both here and to your doctor.
peace
rita
peace
rita
Question 1 - so how bad off do I sound? ...did you ask your Dr? if not, please do...very important.
Question 2 - has anyone made noticeable improvement using any kind of alternative meds/vitamins/milk thisle? -
Alternative meds may stave off the damage for a while...they may even heal your liver after SVR...BUT MAKE NO MISTAKE YOU NEED TO GET TREATMENT TO GET RID OF THIS VIRUS.
read this link about disease progression and gleen the good info - http://www.medhelp.org/posts/show/548220
do your homework and make your decision based on what is best for you.
Question 3 - I have heard how bad the current meds make you feel and some even have lasting affects after treatment ends? Is this the norm?
I have only been tx'ing for a month now...yes I feel bad...but I would rather feel this way now then die from this when I'm older...I am only stage one...still healty and thought it would be better to treat while healthy than wait till I am older and sicker. Honestly...my sx aren't as bad as I had expected...so far.
Question 4 - Do doctors monitor this forum? If not, can someone recommend one that dr's do monitor.
Meet Dr D - here's the link - http://www.medhelp.org/doctor_profiles/show/517294
Stay tuned here...you will see that the people here are very educated and honest and willing to share all of their knowledge and experience. This is the best place you could have found.
Gator
Question 2 - has anyone made noticeable improvement using any kind of alternative meds/vitamins/milk thisle? -
Alternative meds may stave off the damage for a while...they may even heal your liver after SVR...BUT MAKE NO MISTAKE YOU NEED TO GET TREATMENT TO GET RID OF THIS VIRUS.
read this link about disease progression and gleen the good info - http://www.medhelp.org/posts/show/548220
do your homework and make your decision based on what is best for you.
Question 3 - I have heard how bad the current meds make you feel and some even have lasting affects after treatment ends? Is this the norm?
I have only been tx'ing for a month now...yes I feel bad...but I would rather feel this way now then die from this when I'm older...I am only stage one...still healty and thought it would be better to treat while healthy than wait till I am older and sicker. Honestly...my sx aren't as bad as I had expected...so far.
Question 4 - Do doctors monitor this forum? If not, can someone recommend one that dr's do monitor.
Meet Dr D - here's the link - http://www.medhelp.org/doctor_profiles/show/517294
Stay tuned here...you will see that the people here are very educated and honest and willing to share all of their knowledge and experience. This is the best place you could have found.
Gator
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