Welcome to the forum and glad I could finally get here to say that.
Please heed what Jimmy said as you have a ticket to beating and ridding yourself of HVC with Harvoni. There are many of us that have done so already and just this year within the last few months.
It is important to not jeopardize your chances with other OTC drugs or certainly Alcohol.
Be well and keep us posted on your SOT and Scan results as they come in.
SF
JimmyK said
Oct 14, 2016
Greetings Toni,
Harvoni, when taken as directed, at roughly the same time daily, while remaining very well hydrated, is an easy cure for Hep C.
A patient who has never before treated, 1a with cirrhosis, does well on a 12 week course and that is the proper treatment plan.
That said it should be understood that Harvoni has 29 major drug interactions with 115 brand and generic names.
125 moderate drug interactions under a total of 594 Brand and generic names.
and 4 minor interactions under 8 brand and generic names.
The reason I am saying this is twofold. 1) We want this treatment plan to work for you. Take it from me, failing while on treatment is no fun. It is hard to accept both mentally and physically. 2) There are a lot of things that can lower your chances for success and knowledge is power in this regard.
Herbals, Supplements, Alcohol and certain other Drugs can lower the chances for success, some drastically. As a result one of your best sources of information is the Pharmacist at your Specialty Pharmacy that dispenses your Harvoni. In many cases I have found them to be more knowledgeable that some prescribing Physicians.
I could be wrong but I know you have edited out your mention of alcohol. To be honest that has me concerned for you. If you have high levels of ammonia you must be aware that in your case, in particular, alcohol can kill you. This is not simply during treatment either. You must have a more advanced case of liver damage than you may realize if you need meds to reduce ammonia.
You can beat this of that I am quite certain but it will require an honest approach to the seriousness of your condition and how to treat it properly.
Contact your Pharmacist. Explain everything you are taking including vitamins and supplements. Let the Harvoni do it's thing and it does it well but it also demands lots of water, compliance in timing of doses with no interruption during the 12 weeks, and to abstain from alcohol and other substances that interfere with success.
This is your life and with the Harvoni, and proper compliance, you have a great chance at success.
You are in my thoughts and Prayers.
JimmyK
Canuck said
Oct 14, 2016
Hi dmoceri,
Welcome here from me too.
Glad to hear you are ready and poised to start your Harvoni. Good you are getting the fibroscan. Sounds like you have had a good amount of labs, imaging, assessments already, so will have a good baseline to compare back to.
Other than the fibroscan Kpa's measurement you are waiting for, from which they will derive an F-score for you, have they (in the past) ever assigned you a F-score based on any other method(s) of assessment? Just curious, as was Tig, about how your levels of fibrosis/cirrhosis have been .
Nice sungoddess is here doing harvoni too, just weeks ahead of you, so you can follow her progress, and, each others progress!. C.
dmoceri31 said
Oct 13, 2016
Thank you Tig I will.
dmoceri31 said
Oct 13, 2016
I have been keeping tabs every 6 mos on all blood test AST ,ALT, GGT ALBUMIN etc... I followed Lloyd wrights forum and methods since 2008 and it helped me keep my numbers down immensely.
I refused liver biop and past treatments due to the ill effects it had on 2 family members. I will have F test back tomorrow. Just started lactalose a week ago, so yes they where elevated as well.
7 mos ago I had an ultrasound and MRI done on liver. They read mildly enlarged and Dr. said cirrhosis in beginning stages. I cannot get to all my test because my floors are under construction and that room is storage for now until Tuesday . All I really wanted is to see how others have weathered taking the Harvoni and side effects if any other than what the pharmacist had told me. It was my understanding that the Harvoni will kill the virus 99% so I'm not to concerned about the numbers. I am believing all this will not be as critical as it once was.
I realize this is what a lot of us have been doing in the past but I do not see the point at this time.
So in advance I want to sincerely say thank you for all who reached out. I think what I will do is come back to this at a latter date when I have started and am better educated so that I can join in, share and inspire others.
Again, Thank you
Toni
Tig said
Oct 13, 2016
Toni,
I saw your message. Looks like you figured out the edit process. If you have any questions, don't hesitate to ask. There is a link in my signature (red) that will describe some abbreviations and setting up your signature line. I want you to review the Knowledge base section for tons of useful info, as well as the search function located at top center of each page. A keyword or two will direct you to discussions here on the forum.
dmoceri31 said
Oct 13, 2016
Thank you
-- Edited by dmoceri31 on Thursday 13th of October 2016 09:56:14 PM
sungoddess said
Oct 13, 2016
Hi Toni, I'm taking Harvoni and other than a few minor headaches and a little morning "fog" in the beginning, this treatment is pretty easy to do. I just finished my 3rd week. I wouldn't drink alcohol while taking your meds, your liver needs to be in healing mode. A gallon of water a day will keep you hydrated and help to keep the side effects away. There is a lot of very good info on this site. Welcome.
Tig said
Oct 13, 2016
Toni,
It's advised to stop the extra supplements while on treatment. The Lactulose indicates you have a bit more cirrhosis than the "start" of. Have you been diagnosed with high ammonia levels or encephalopathy? It's important to have an accurate determination of your fibrosis stage. A Fibroscan, MRI or biopsy to determine it is well advised. There are blood markers that can be used, but aren't as accurate as the others mentioned. Do you know what your ALT and AST are?
dmoceri31 said
Oct 13, 2016
Thank you I have asked to be called back its been 2 days. I was told he is in seeing patients.
I will definitely will not start with out speaking to Dr. I think I will call pharmacist back as well.
dmoceri31 said
Oct 13, 2016
Jimmy,
I am currently taking xifaxin and lactalose for ammonia levels.
I take a lot of vitamins magnesium chromium i can go on and on with that. But I do eat good gluten free exercise drink a ton of water.
I would have to wait aprox a month to see my Dr.
Tig said
Oct 13, 2016
Hi Toni,
Welcome to the group! There is a lot of information you can provide that will help us provide a better informed opinion. I'm with Jimmy, you need to coordinate this with your doctor or treatment nurse before starting.
Providing any test results you have is helpful as well as type of treatment and length. Once we know a little more, we will be happy to pile on the information! Don't worry, we're here to make this easy!
dmoceri31 said
Oct 13, 2016
Hi Jimmy
geno is 1A
Waiting on f score should have tomorrow and I was told start of some chirosis
12 weeks Harvoni
I appreciate anything you can share with me.
Toni
JimmyK said
Oct 13, 2016
Greetings and welcome to The Family here.
The idea of drinking at all on any of these treatments is counterproductive. Alcohol dehydrates and that is one of the worst things you can do while taking these drugs.
Next if it were me I would not start until you have coordinated with your Doctor. There is specific timing of blood tests that must be scheduled.
Do you have any blood tests you are able to redact and share?
Geno Type is it 1a or 1b?
Do you know or have an "F-Score" which is a scale of fibrosis.
What drugs were delivered and what is the treatment duration?
That is just for starters and yes you are in the right place.
JimmyK
dmoceri31 said
Oct 13, 2016
Thank you
Lchris1 said
Oct 13, 2016
Welcome Toni!
You have come to the right place. Several others will be along shortly, they are much more knowledgeablethan I, so I'll let them give some direction. Other than I personally wouldn't have any occasional drinks except plenty of water. Congrats on starting treatment! SVR = Sustained viralogical response
dmoceri31 said
Oct 13, 2016
Hello everyone. I am new to this forum and have many questions. I was approved for the drug and received it in the mail yesterday.
Which is how I found this site. My Dr. never spoke to me about how or when to start. I'd like to know about how others began can its possible effects on any upcoming events I have etc.. I find it strange my Dr. did not explain any of this he made it sound like once I got approved we would go over all this and than begin. Instead He had it mailed to me via pharmacy of his choice. I am not complaining about that very grateful.
Thanks for your help in advance.
Toni
I was diagnosed in 2007-2008
Hep Genotype 1a
Do not have f score back yet.
Harvoni 12 week
-- Edited by dmoceri31 on Thursday 13th of October 2016 07:56:47 PM
Welcome to the forum and glad I could finally get here to say that.
Please heed what Jimmy said as you have a ticket to beating and ridding yourself of HVC with Harvoni. There are many of us that have done so already and just this year within the last few months.
It is important to not jeopardize your chances with other OTC drugs or certainly Alcohol.
Be well and keep us posted on your SOT and Scan results as they come in.
SF
Greetings Toni,
Harvoni, when taken as directed, at roughly the same time daily, while remaining very well hydrated, is an easy cure for Hep C.
A patient who has never before treated, 1a with cirrhosis, does well on a 12 week course and that is the proper treatment plan.
That said it should be understood that Harvoni has 29 major drug interactions with 115 brand and generic names.
125 moderate drug interactions under a total of 594 Brand and generic names.
and 4 minor interactions under 8 brand and generic names.
The reason I am saying this is twofold. 1) We want this treatment plan to work for you. Take it from me, failing while on treatment is no fun. It is hard to accept both mentally and physically. 2) There are a lot of things that can lower your chances for success and knowledge is power in this regard.
Herbals, Supplements, Alcohol and certain other Drugs can lower the chances for success, some drastically. As a result one of your best sources of information is the Pharmacist at your Specialty Pharmacy that dispenses your Harvoni. In many cases I have found them to be more knowledgeable that some prescribing Physicians.
I could be wrong but I know you have edited out your mention of alcohol. To be honest that has me concerned for you. If you have high levels of ammonia you must be aware that in your case, in particular, alcohol can kill you. This is not simply during treatment either. You must have a more advanced case of liver damage than you may realize if you need meds to reduce ammonia.
You can beat this of that I am quite certain but it will require an honest approach to the seriousness of your condition and how to treat it properly.
Contact your Pharmacist. Explain everything you are taking including vitamins and supplements. Let the Harvoni do it's thing and it does it well but it also demands lots of water, compliance in timing of doses with no interruption during the 12 weeks, and to abstain from alcohol and other substances that interfere with success.
This is your life and with the Harvoni, and proper compliance, you have a great chance at success.
You are in my thoughts and Prayers.
JimmyK
Hi dmoceri,
Welcome here from me too.
Glad to hear you are ready and poised to start your Harvoni. Good you are getting the fibroscan. Sounds like you have had a good amount of labs, imaging, assessments already, so will have a good baseline to compare back to.
Other than the fibroscan Kpa's measurement you are waiting for, from which they will derive an F-score for you, have they (in the past) ever assigned you a F-score based on any other method(s) of assessment? Just curious, as was Tig, about how your levels of fibrosis/cirrhosis have been .
Nice sungoddess is here doing harvoni too, just weeks ahead of you, so you can follow her progress, and, each others progress!.
C.
Thank you Tig I will.
I have been keeping tabs every 6 mos on all blood test AST ,ALT, GGT ALBUMIN etc... I followed Lloyd wrights forum and methods since 2008 and it helped me keep my numbers down immensely.
I refused liver biop and past treatments due to the ill effects it had on 2 family members. I will have F test back tomorrow. Just started lactalose a week ago, so yes they where elevated as well.
7 mos ago I had an ultrasound and MRI done on liver. They read mildly enlarged and Dr. said cirrhosis in beginning stages. I cannot get to all my test because my floors are under construction and that room is storage for now until Tuesday . All I really wanted is to see how others have weathered taking the Harvoni and side effects if any other than what the pharmacist had told me. It was my understanding that the Harvoni will kill the virus 99% so I'm not to concerned about the numbers. I am believing all this will not be as critical as it once was.
I realize this is what a lot of us have been doing in the past but I do not see the point at this time.
So in advance I want to sincerely say thank you for all who reached out. I think what I will do is come back to this at a latter date when I have started and am better educated so that I can join in, share and inspire others.
Again, Thank you
Toni
Toni,
I saw your message. Looks like you figured out the edit process. If you have any questions, don't hesitate to ask. There is a link in my signature (red) that will describe some abbreviations and setting up your signature line. I want you to review the Knowledge base section for tons of useful info, as well as the search function located at top center of each page. A keyword or two will direct you to discussions here on the forum.
Thank you
-- Edited by dmoceri31 on Thursday 13th of October 2016 09:56:14 PM
Toni,
It's advised to stop the extra supplements while on treatment. The Lactulose indicates you have a bit more cirrhosis than the "start" of. Have you been diagnosed with high ammonia levels or encephalopathy? It's important to have an accurate determination of your fibrosis stage. A Fibroscan, MRI or biopsy to determine it is well advised. There are blood markers that can be used, but aren't as accurate as the others mentioned. Do you know what your ALT and AST are?
I will definitely will not start with out speaking to Dr. I think I will call pharmacist back as well.
I am currently taking xifaxin and lactalose for ammonia levels.
I take a lot of vitamins magnesium chromium i can go on and on with that. But I do eat good gluten free exercise drink a ton of water.
I would have to wait aprox a month to see my Dr.
Hi Toni,
Welcome to the group! There is a lot of information you can provide that will help us provide a better informed opinion. I'm with Jimmy, you need to coordinate this with your doctor or treatment nurse before starting.
Providing any test results you have is helpful as well as type of treatment and length. Once we know a little more, we will be happy to pile on the information! Don't worry, we're here to make this easy!
Hi Jimmy
geno is 1A
Waiting on f score should have tomorrow and I was told start of some chirosis
12 weeks Harvoni
I appreciate anything you can share with me.
Toni
Greetings and welcome to The Family here.
The idea of drinking at all on any of these treatments is counterproductive. Alcohol dehydrates and that is one of the worst things you can do while taking these drugs.
Next if it were me I would not start until you have coordinated with your Doctor. There is specific timing of blood tests that must be scheduled.
Do you have any blood tests you are able to redact and share?
Geno Type is it 1a or 1b?
Do you know or have an "F-Score" which is a scale of fibrosis.
What drugs were delivered and what is the treatment duration?
That is just for starters and yes you are in the right place.
JimmyK
You have come to the right place. Several others will be along shortly, they are much more knowledgeablethan I, so I'll let them give some direction. Other than I personally wouldn't have any occasional drinks except plenty of water. Congrats on starting treatment! SVR = Sustained viralogical response
Hello everyone. I am new to this forum and have many questions. I was approved for the drug and received it in the mail yesterday.
Which is how I found this site. My Dr. never spoke to me about how or when to start. I'd like to know about how others began can its possible effects on any upcoming events I have etc.. I find it strange my Dr. did not explain any of this he made it sound like once I got approved we would go over all this and than begin. Instead He had it mailed to me via pharmacy of his choice. I am not complaining about that very grateful.
Thanks for your help in advance.
Toni
I was diagnosed in 2007-2008
Hep Genotype 1a
Do not have f score back yet.
Harvoni 12 week
-- Edited by dmoceri31 on Thursday 13th of October 2016 07:56:47 PM