4 weeks on Harvoni . My Hep C still detected.

[BattleTheBeast]

Ok, kind of concerned from all this; does this mean if we somehow were in a pool and cut our foot or scrapped ourself and there was blood even a tiny bit that we could have potentially infected others. This is crazy to think about given how many years I alone was undetected. What is safe, what isn't, what's over the top? No one else in my family is infected after all these years of not knowing but what does that mean?

I don't know what is ok to do, then we wonder why we have a stigma in our own minds. Just hard to know right from wrong.

~Mel~

[sunrise]

Yeah Bucky
        Thats more like it. Good wishes on your results

[Mike]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

[sunrise]

Mel
 No worries. Pools are treated with clorine. That kills virus. We cant be so stigmatized. Its not easy to transmit or I would be out of a job. Rest easy Mel

[Bucky]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

Yes, this was the same conclusion that I reached after reading both reports. Since most data was reflective of clinical treatment with I&R then one can hope for an improvement for the final outcome when you consider those of us treated with DAAs.
Bucky

[dragonslayer]

Hi Bucky,

When reading the abstract, which summarizes the study, it indicates that 40% of those obtaining a SVR had resolved  fibrosis (meaning 60% did not) and 50% of those with a SVR had a resolved cirrhosis (meaning 50% did not). This is also reported in the discussion section.

The study also reports limitations in the sample which impact validity (the study was comparing those who achieved an SVR and those who did not or were treatment naive). This is reported in the 4th paragraph in the "Discussion" section.  Most notably was that  baseline pairing/matching of patients was not done, which means that relevant variables were not controlled, therefore increasing variance scores and decreasing validity.

In essence, this study reports similar results as noted in the editorial summary  I posted.

Mike

Still trying to find some good news here, I note that the actual quote is as follows:

"40% of patients resolved ALL fibrosis..."  There were also partial reductions, which of course would bring up the total number of reductions.  The abstract also lists the mean reductions.   Its an acrobat file so I cant copy and paste from it. Ill just type it in:  " Patients with SVR had a significant decline in mean inflammation and fibrosis scores (from 6.7 to 2.2 and 3.3 to 1.8 )"   Remember this study was done on patients having received interferon treatments.  We really dont know what these numbers will look like with Harvoni or S&O treatments.  Guess we're the guinea pigs for now.

[Mike]

The way I read the good news is that if the virus is eradicated and an SVR is achieved, the inflammation is stopped as well as the progression of fibrosis. This, in turn, can improve liver function and lead to regression of fibrosis and cirrhosis in many who obtain a SVR. This process continues 5-15 years after an SVR is achieved, indicating that a Hep-C damaged liver can rejuvenate.

However, there is a significant number of those who obtain an SVR who do not experience this and may have a progression towards cirrhosis irrespective of an SVR (gleaned from the other article).

Best wishes, Mike

[BattleTheBeast]

Mel
 No worries. Pools are treated with clorine. That kills virus. We cant be so stigmatized. Its not easy to transmit or I would be out of a job. Rest easy Mel

So i guess I need to go find a hot tub and throw all my stuff in every couple of weeks for a thorough cleaning

[Bucky]

I just wanted to point out that the abstract that appeared in the Oxford Journal  "Hepatitis C Virus Infection: When is a cure not a cure" was an editorial commentary containing references from 21 sources dated 11/14/2013. The paper published form the Annals of Hepatology Contained 46 references and was dated 7/2014.

Now, not to discredit but maybe question the accuracy of these two papers and all the other information that we are being flooded with, let me give you a little background about myself. I retired this spring as an instructor from a State Funded ICF facility that is home to 350 individuals who are mostly severe/ profound intellectually disabled. Beside teaching them basic care and vocational skills our main objective was to investigate new medications and behavioral approaches.

Most all of the anti psychotic, anti depressant, and dementia medication were tested at the facility many years ago before they were issued FDA approval. We also investigated different approaches to behavior interventions involving different types of stimuli that evolved from shock boxes (no longer allowed) to more humane rewards such as a favorite editable or preferred items for not exhibiting maladaptive behavior. All the data relating to these finding was recorded and annualized by our research department comprised of roughly 25 people.
   
Every spring our campus was flooded with doctoral students preparing their dissertations for graduation. They all had a trial or subject that they investigated and collected data on as well. Most all had their papers were published ( I am now referring to all the references note in the first paragraph). The research department at my old facility had literally thousands of abstracts published to reflect the current theories of the time. The next year a student or another clinician would publish another paper with a different theory than the one from a year earlier.

My point in all this is that although these abstracts appear creditable and accurate they are mostly reliant on a copulation of references from other authors. With my heavy involvement in clinical trials, data collection and individual interpretations, I can attest to the fact that you cannot believe everything you read (good or bad) in published reports as they are sometimes subjective interpretations of other peoples findings.

Bucky

[sunrise]

Hi Bucky
      Guess the proof is in the pudding.  Im really anxious for your results! Is this your end of treatment or 12 week after?
       Thanks Sunrise

[mario555]

To ''Battle of the beast''. On which treatment are you on? S/O or Harvoni?  Your liver condition appears very similar to mine and I'm interested to know how things progress with you. Please continue to tell us your numbers. This way I can see what will happen to me 3 weeks down the road!

[Bucky]

Hi Bucky
      Guess the proof is in the pudding.  Im really anxious for your results! Is this your end of treatment or 12 week after?
       Thanks Sunrise

Hi sunrise,
Yes, it is my 12weeks EOT blood work. I had my baseline MRI yesterday and I sure wish I had taken a Xanax before that! I will find out that result on Monday when I see my IDS. I have some nonfocal small lesions identified during my US six months ago but my doctor said that they were probably caused by my liver trying to regenerate. My blood test #s for tumors was very low so I am not concerned.....yet.
Bucky 

[sunrise]

Well I'm plugging for you Bucky. I have 20 days left on txm o have a doctors appt later today and im gomna pick his brain aboit this relapse issue.

[JillLynn]

Bucky........pulling for you too!

[Bucky]

Thank you my friends. I still feel really well and have lots of energy so I am only anticipating the best news. We shall see.
Bucky

[Mike]

Hi Bucky,


I did note that the post was an editorial discussion, which summarized current research studies and findings. Since it was written by Dr. Hans Tillman and published in a  juried journal from one of the top universities in the world (Oxford), I gave it a little more weight then an abstract from a doctoral  dissertation.

The author, Hans Tillman was appointed Professor of Medicine in Leipzig, Germany in 2004 and continued to focus on viral infections. In 2007 he joined the Duke Clinical Research Institute (DCRI), which can be considered the largest academic clinical research institution worldwide, where he is now  responsible for viral load and safety monitoring for various clinical trials. He has an interest in treatment prediction and optimized use of antivirals. Dr. Tillman has published over 120 original and 65 review and opinion articles, and 35 book chapters, and has edited 2 books. 

Having been a research assistant myself at a  university for 4 years, I'm  versed in research methods & design as well as applied statistics and so forth. I also work in the field of integrated disability management, which requires the consumption of current clinical research in a variety of areas.

This being said,  I thought Dr. Tillman did an excellent job summarizing current research studies and discussed the findings in an objective manner, giving appropriate references and citations.

Best wishes, Mike

[sunrise]

Wow Mike
           Thats a whole lotta information to take in. Sounds like we have some good people watching over us  :-). Guess we are all just anxiously waiting to see our progress. Thanks for all your answers and concern
Sunrise

[Bucky]

Hi Bucky,


I did note that the post was an editorial discussion, which summarized current research studies and findings. Since it was written by Dr. Hans Tillman and published in a  juried journal from one of the top universities in the world (Oxford), I gave it a little more weight then an abstract from a doctoral  dissertation.

The author, Hans Tillman was appointed Professor of Medicine in Leipzig, Germany in 2004 and continued to focus on viral infections. In 2007 he joined the Duke Clinical Research Institute (DCRI), which can be considered the largest academic clinical research institution worldwide, where he is now  responsible for viral load and safety monitoring for various clinical trials. He has an interest in treatment prediction and optimized use of antivirals. Dr. Tillman has published over 120 original and 65 review and opinion articles, and 35 book chapters, and has edited 2 books. 

Having been a research assistant myself at a  university for 4 years, I'm  versed in research methods & design as well as applied statistics and so forth. I also work in the field of integrated disability management, which requires the consumption of current clinical research in a variety of areas.

This being said,  I thought Dr. Tillman did an excellent job summarizing current research studies and discussed the findings in an objective manner, giving appropriate references and citations.

Best wishes, Mike

Mike,
It appears that we something else in common.  I had 30 years in the field and have witnessed many theories discredited during my time at my former employer. Over the years we have had many doctors and students from Duke conduct studies and trials of which I was part of the data collection and interpretation. I met Dr. Tillman when he was a guest of our facility director.
Bucky

[JoeK9999]

JillLynn,  Stay positive lots of power in positive thinking. 
I go for my 4 week labs next week 11/26 I won't know the results until doctor's appointment 12/02 I will surely advise you of results.  Maybe I will have the same results as you and be a little freaked also understandable.  For the next 4 weeks remain positive and keep on fighting until cured.  It's not over yet!  Take care, live well  K

Rainydays rainbow,
How did your 4 week VL test turn out?
Joe

[rainydays rainbows]

To All,   My viral load was undected at 4 weeks ALT and AST were fine in normal range I believe the test that were done are the same as the ones done to diagnosis my Hepatitis C.  I am just going with HOPE!  Keep our HOPE alive for the best.  Thanks to everyone

[JillLynn]

Hi Joe.......Hoping today to get the results.   If I don't hear from my DR.  I'll call around 4pm.     Thank you for asking!  I'll be back for sure with the results.
   This is such an interesting thread.  I never even thought about re-infection from my toothbrush, razor etc.    My gums don't bleed when I brush but still I'm gonna go get some new ones today and disposable razors.  All good to know.
    I was cleared from HCV for 9 mos in 2004 and it came back.   
In 2000 I did 48 week also of int/rib and the virus never did clear.   

[JillLynn]

rainydays........that's gotta be a GREAT feeling.   Happy for you.    Even though we know it's the final one that counts....just being UND is a huge mental and spirit boost.  big hug to you! I'm hoping for that today or tomorrow when I get my week 6 VL result on harvoni. 

[JoeK9999]

Good job Rainydays.
JillLynn yours should be cleared. Praying for the good news!

[JillLynn]

OK.  My week 6 blood test shows I'm undetected~so happy about that.   Whoo hoo!   I know its not official until it's over but it just feels frikkin' great to be undetected!!

BUT....my liver enzymes are higher than they've been in a long long time.   Put a call into Dr. just now.
AST 107
ALT 171
Anyone else on Harvoni have elevated liver enzymes?     My liver enzymes have been in the normal range for quite a while so this is new.

[Doluska]

It is interesting! My enzymes were in the sky, getting slowly down, but after 3 weeks still not Norma , a tiny little bit up from normal. I was told that I am "slow response" I was asking couple of times on this forum - nobody had it, or people didn't want to share. My own opinion - everybody are different, our body  work by it own way. Wait for a final result, hope for the best, if we'll eat our heart and brain - cure will not come easier.
P.s. - what your doc. told about it?

[Rubye]

JillLynn, do you have cirrhosis?
I wasn't undetected until week 8 but at week 4 and since my liver enzymes and labs have all been very good but I'm on S/O. Alt and ast went way down right away.
What did your doctor say?

[sunrise]

Hi everyone
      Went to doc last night. He was really upset as I did not get a test for vl at 8 weeks. It was wierd becausr when I got my lab orders for the 12 week treatment I noticed there was pcr orders for 4 wk and 12 wk. I questioned the patient advocate and she said doctor only wanted those weeks tested. Well he was pissed. He said I could get vl doen bit since im in my 10th week it doesnt really make a difference now. He will do 4 12 and 24 week EOT tests though. He seems confident that I am going to be cured as I am following protocol to the tee. He talked to me about people being so negligent about forgetting meds and actually drinking alcohol during treatment. Said "Dont know why they waste his and their time if they aren't committed to treatment." I totally agree. Why would you even do ot if you weren't going to do it right. So I asked him what of I relapse. He said no worries we will just use a different med. I love my doc... great to hear undetected ladies!!!

[Rubye]

Actually, I don't see how anyone could miss taking their meds for the most part on time every time, or why anyone would want to drink while on tx. At the same time, I can understand it to an extent.

That's too bad about missing the VL. My prescribing doctor didn't want to check VL until 12 weeks so I had my pcp order them for me. If nothing else, knowing I'm undetected has given me that extra impetus to hang in there and it simply makes me feel good.

Not much longer now. She said smiling.

[JillLynn]

No, I do not have cirrhosis Rubye.
I'm waiting to hear from my DR. about the high liver enzymes.  They've been in normal range for a long time.  So this is very puzzling to me.
      anyone have an idea as to why my alt/ast have gotten so high in the last 2 weeks on harvoni?
they were normal 2 weeks ago.

[JoeK9999]

Sounds strange.
That liver panel test is very inexpensive. I would ask the doctor to have it tested again to make sure it's not in error.

[mario555]

About the jump in AST and ALT. Have you eaten, drank or taken anything out of the ordinary? It only takes one product to have an effect. As an example, if I eat a handful of nut 2 days in a row (or ice cream), I get a major jump in my enzymes from 110 standard to 3-400.  I have a friend who is a doctor in an emergency ward and I'd call him when I'd feel pulling in my liver after ingesting nuts/ice cream so that he'd take a blood sample as the ''liver pulling'' is happening. So I'd have a real time read out rather than a blood test 4 days later when everything is back to normal.  I love nuts and ice cream but this stuff will kill me! I would suggest you check what you've ingested in the 2-3 days before your blood test.

[JillLynn]

JoeK......gonna see about getting one Monday.   My drs asst is out until tomorrow.    But I talked to the girl filling in for her today and she said she has seen this happen on treatment but she didn't know anything really.
Mario555.......I eat a lot of raw almonds and cashews so maybe that was it.  hmmmmm....but I've always eaten them so I don't know.    But something spiked it thats for sure.
    I'm going to suggest another blood test Monday instead of waiting until the 15th.  Hopefully she'll agree.       I get my liver enzymes checked every 3 months and they are always low so this was really out of the ordinary.   

[Rubye]

That's so interesting about the nuts and ice cream. It just goes to show what a difference how we eat makes in our overall health.

[Doluska]

4 weeks undetected! Yey! But anzimes still not normal, going down so slowly! But good news are so exiting, that i Told to myself: " you going to be thankful ,and happy!" So here I am. And I wish a good news for everybody!

[JillLynn]

great news Doluska!      thankful and happy sounds great!     

[Doluska]

Thank you, dear! And you see, my enzymes are still not normal! Am I being worried about it? Yes, I am, but I am confident, that our body's are not working strictly by the book! We all different in our own way. Good luck to you and all our pen friends!

[JoeK9999]

Everybody just make note, there are no experts in this forum that I know of, meaning hepatologists or direct researchers with these new drugs. If I am wrong please state your credentials. The few people here, out of thousands being treated do not represent the facts. We have not heard the masses stories. I have come to the conclusion not to pay too much attention to this forum, other than side effects and things like that.

We all know one thing that is a fact. Approximately 95% of study participants in all the Sovaldi combo trials (Harvoni and S/O) were cured. I think my doctor was right when he said he doesn't like taking HVC RNA tests until treatment has ended. He said if positive on a test then a patient has doom and gloom and if negative then maybe a false sense of hope. His opinion is these are the miracle drugs we have been waiting for.
What difference is it going to make as he said. The only true reading is 3-6 months EOT.  The odds are that we all will be cured if we take our medicine as directed.
I still don't have facts on why a small % failed treatment. I'm sure there will be some data on that available in the future, other than the folks who lied and  who skipped pills, split them in half for their partner to take also, and drug abusers/alcoholics while on treatment who probably lost or missed pills.

[Picnic]

Boy , you sure are a downer! No this may not be the Mayo clinic but it sure brings pleasure to many of us that have gone through hell for many years! Larry

[BattleTheBeast]

Boy , you sure are a downer! No this may not be the Mayo clinic but it sure brings pleasure to many of us that have gone through hell for many years! Larry

I am with you Larry, I can't tell you how much I appreciate the input from my fellow warriors!

~Mel!

[JoeK9999]

Larry, Mel and anyone else,
I don't mean to offend anyone. People on this forum
including myself worry based on others on-treatment results.
I am simply stating that we can't worry when we are not experts
and haven't seen all the facts. And yes I like to see others input too.

[mario555]

Sorry Joek, I'm gonna vote for picnic. This site has an incredible amount of knowledge "as a group". Every single piece of literature available has been scrutinized by one of us and reported here. Reading everything on hep c can't be done by a doctor because of a lack of time. As a group we know most of what there is to know on hep c. We are real specialists on "relapse" which is the subject that can cause the most heartaches. I wish I would have found you when I was doing INF because I had never been so lonely! So long live the Dragon slayers!

[JoeK9999]

Well now that you guys/gals are pissed at me,can you find me the stats on why the failures happened? Remember I am one of you. I have had this nasty bug since the 70's most likely.

[mario555]

We're not pissed off, we are galvanized... I guess you just touched a sensitive subject, that's all. We'll be the ones not achieving svr and we'll be the ones helping to find the response

[Bucky]

Well now that you guys/gals are pissed at me,can you find me the stats on why the failures happened? Remember I am one of you. I have had this nasty bug since the 70's most likely.

Well JokeK9999,
I am highly offended as many of us are being seen by the best in the field of HepC treatment. Our moderators are top notch and most have attended the conferences on Hepc management and cures.
My IDS is the department head at a very large and nationally recognized Teaching Hospital/University. The doctors don't yet know why the failures happen, but if you can figure it out you will be in line for a Nobel Prize.

Now....Just messing with you man!  This is a great forum and we are very protective of our members. You do bring up a good point about our backgrounds but since we have walked the road we know a lot. I hope you have noticed that no one has ever recommend that someone go against their doctors orders. Most advice suggested here is just good common sense concerning how to cope with the stresses of treatment.

Bucky

[JoeK9999]

Bucky,
Yeah I know. We are all serious about curing ourselves and I see
so much worry on here it depresses me too. I'm praying in less than 1 year from today, all we will we hear in this forum is "The beast is gone!"

I am not a doctor, nor a medical researcher, but I did read something else very interesting. Standard antibiotics today have a 94 - 95 percent cure rate for infections.
So that says something about the percentages. The only time an antibiotic didn't work on me is when I had a root canal and the dentist prescribed only 5 days and I came back to him with an infection a few days later. He prescribed 10 days and cured. I have a feeling these rates are the same with just about any drug on the market now and the only reason not to cure is because too short a time or the patient didn't take all the medicine. I hope this cheers everyone up. Have a great weekend.

[Bucky]

Bucky,
Yeah I know. We are all serious about curing ourselves and I see
so much worry on here it depresses me too. I'm praying in less than 1 year from today, all we will we hear in this forum is "The beast is gone!"

I am not a doctor, nor a medical researcher, but I did read something else very interesting. Standard antibiotics today have a 94 - 95 percent cure rate for infections.
So that says something about the percentages. The only time an antibiotic didn't work on me is when I had a root canal and the dentist prescribed only 5 days and I came back to him with an infection a few days later. He prescribed 10 days and cured. I have a feeling these rates are the same with just about any drug on the market now and the only reason not to cure is because too short a time or the patient didn't take all the medicine. I hope this cheers everyone up. Have a great weekend.

JoeK9999,
Good point about antibiotics. I am really concerned about the news concerning the Flu Vaccine for this year. I have had it before and it wasn't fun.
Bucky

[JillLynn]

" Have you been exercising lately? Sometimes muscles can release the same enzymes."  this is what my hepatologist wrote me back about my elevated liver enzymes at 6 weeks on harvoni.     And I also just got another blood test to see where they are today (one week later).   I'm so happy to be undetected at this point....(its a psychological boost for me) although I was undetected before and it came back 9 mos. later.....I'm still happy to be undetected again.  the harvoni makes me nauseas all the time ( not to be negative ) it's just the side effect that I am experiencing and I don't get nauseas in my "real" not on treatment life.      I learn a lot from all of you.   I know we are a very knowledgeable group of people.    How could we not be?   Some of us have been living and studying this ever since Hep. C was made known to the public.     A long time.   
   

[Doluska]

Dear Lynn! Bananas help me a lot, as well as peanut batter, taken after the med's, it'covers your stomach and prevents from the chemicals irritating it. And try to eat something  every 2-3 hours, not acidic, but calming, small  portions. Good luck with the treatment!D.

[JillLynn]

thank you Doluska.
I eat them but never AFTER the meds.  Will try that today!  ......  and small portions.   I often let myself get too hungry and then eat too much.    Good luck with your treatment too!

cheers my friend!

xx

[Doluska]

Dear Lynn! Apropos, my ALT , AST still not normal too, after 4 weeks, but thanks God - undetectable!!D

[Proudgmma]

Hi Mike.... I have a question. You mentioned that HCV can live outside of the body up to 42 days. I recently read an article from the Centers for Disease Control (CDC.gov) that the HCV can only live outside of the body up to 4 days.

Can you share with us where you read your stats?

Appreciate it.

[JC]

I've been lurking on the site for the past couple weeks and thought it important to share to support the community. I've had HCV for probably about 30 years, but didn't find out until about 10 years ago. Unfortunately, my son had contracted it as well, probably during childbirth. That was the hardest thing for me. He did end up doing the 1-year torture treatment about 9 years ago and was cured. I wanted to make sure he had the treatment before he got off my insurance. He was about 16 at the time and it was really hard on him. But he stuck it out and all is well.

I chose not to do the treatment because I was older and feared it would be much worse on me. I had options due to my work insurance and could wait it out. Prior to diagnosis, I wondered why I was always so tired...everything in life seemed hard. But I've led a fairly normal adult life, have a good job and have continued to work full-time for over 35 years. My nurse practitioner said as long as my labs were decent, I could wait.

Started taking Harvoni two weeks ago today. I only have to do the 8 week treatment - low viral load. I have been feeling surprising well. One thing I've noticed is I don't have the intense brain fog that I have been used to for so many years. I'm not sure if that is due to what's in the medication or something else. I did get my first headache yesterday. Fine today so far. I should be finished by the end of January. I'll post again if there is anything that will be helpful to others. Good luck everyone and so excited that the time has come where we don't have to use the earlier drugs. Also, insurance approval was a breeze...however, I do have good insurance. All the best.

[BattleTheBeast]

Hi JC,

Thanks for sharing your story and joining in! That's great that your son is cured and you will be next. So happy you are doing well with the Harvoni and hope to here more from you as you continue your journey.

Mel~

[Mike]

Hi Proudmme,

Here's a scientific research study documenting HCV survival in water jugs stored at room temperature for 3 weeks:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCAQFjAA&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3611766%2F&ei=tFaOVJ-bKcf7sASbvYHQDw&usg=AFQjCNEl5ttVCtC0USir-PxcXjukO4T5XA&bvm=bv.81828268,d.cWc

Here's a link to a fact sheet indicating that dried HCV can survive for 42 days in certain circumstances and up to 63 days in other condition:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0CDgQFjAE&url=http%3A%2F%2Fwww.hcvadvocate.org%2Fhepatitis%2Ffactsheets_pdf%2FHow_long.pdf&ei=tFaOVJ-bKcf7sASbvYHQDw&usg=AFQjCNEQoJcoZ-U_fnaAct85Ap0knwiQNA&bvm=bv.81828268,d.cWc

Best wishes, Mike

[Mm]

This is my first post.  It took me a month to decide to join and be a part of a community.  i have faced this alone as I felt ashamed.  It's irrational, I know, but not knowing how I got this nasty virus only made things worse.

I am waiting for my 4 week tests to come back.  At 2 weeks I went from 5,975,000 down to 68 and my liver function tests went into the normal range.  I'm not sure why I was so anxious about the 4 week results, but I was.  I read all of the good advice given by you all and my spirits are lifted.  Many thanks.
MM

[dragonslayer]

Let's cut JoeK a little slack!   I didnt get the impression he was dissing anybody here... I think what he was speaking to was the fact that while there is a preponderance of great information available on these forums, some of the responses can get a little aggressive if somebody's doctor has not ordered the same bloodtest on the same schedule as they have.. By the same token, folks who's treatment details are not  exactly like somebody else's are likely to question their own doctor's orders.. Maybe they should and maybe they shouldnt..  But  as JoeK says, people responding on this board are just other patients, like we all are.  While some have done more research than others, the fact is, medical advice is not supposed to be given here... This is supposed to be a support board; not a 'you need to do xyz, etc' board.  These drugs are new, obviously, and some doctors use the same blood test regimen that they used to use with Interferon and drugs of that generation.. This is a new game now..  New rules.. and various doctors will approach things differently.  SVR12 and SVR24 are really all that matters. Some doctors, as JoeK said, have ordered tests more frequently had found it eases their patients state of mind; others have found it causes more angst.   So, lets all respect and support each other the best we can, and make our suggestions in a helpful, non biased way without trying to put down other folks' treatment and monitoring plans simply because they dont look the same as ours. 

Ok off my soapbox now.  I just didnt think JoeK deserved the little bit of lashing hes gotten.

[BattleTheBeast]

Hi DS,

I think the posts you are referring to are a couple of months old. So just wanted to bring that to your attention. I'd also like to say I feel it was settled in a very kind, supportive way, with no hard feelings.

Personally I feel like we are all very supportive of each other. Once in a while something will come up on here that touch a hot button but hey we are all dealing with a very stressful situation. In my humble opinion I can honestly say that overall I haven't seen anything but a bunch of concerned people trying to support each other.

Mel

[bridget]

MM,
That's great news on the drop in your viral load! I hope you see UNDETECTED on your next result sheet.
BTW, yes, I felt ashamed at one time, but put it behind me. I don't discuss my HCV with anyone other than my husband, but this community helps a lot.
Good luck!

[dragonslayer]

Mel. I swear, I was not referring to any specific posts.  Really! Just in general.

[BattleTheBeast]

HI DS,

I went down the thread you had replied on because it appeared to be what you were referring to. Just wanted to bring out the positive from that interaction and how long ago it was.

It's all good and I agree we should all be supporting each other and I normally see that which is what I was pointing out in my response.

No worries, just keep up the happy positive thoughts and we will all get through journey in one peace! (yes I misspelled on purpose)

Mel

[JoeK9999]

One thing I want to note here. When I spoke to Gilead months ago, they made it clear that "our" doctors would make the decision of 8 , 12 or 24 weeks based on our individual criteria. They stated it was not a test while on treatment based criteria like
past protocols were where they lengthened times if the test results were not what they liked. In other words if you are scheduled for 'x' weeks, that's what you will get and finish, then you will have to wait 12 weeks post treatment for your outcome. We may not like that approach, but that comes straight out of Gilead's mouth.

We could get a test everyday and it could be different. The proof is with Lucinda on the trials. At 4 weeks undetected, at 6 weeks detected and at 12 weeks post treatment undetected. I can still feel the effects of the meds in my system 2 weeks after EOT. I don't know if they were still active or they just wacked my body.

I have no idea what my 12 weeks post test will be and yes I have anxiety about it,
as we all do, but all I we do is wait and see. At EOT it is out of our hands.
All we know right now is the results of the clinical trials of 2000 people.
In the worst case scenario, we all know there are great strides going on right now in research for other cure protocols that will be hitting the market soon.

 

[BattleTheBeast]

Hi Joe,

Thanks for sharing that, I like many others are choosing to follow what my ID doctor thinks is the best approach for me to beat this infection. Testing frequently or not may be done for various reasons and each physician has a different approach. I think the key for me is to have a doctor I trust and following his directions, that's what I am doing. When I don't agree, I ask him why and he explains until I do.

That works for me because he is the one with the expertise in this field and if I didn't trust him he shouldn't be my doctor.

It's such an emotional thing, to be sick in the first place then to deal with the stigma attached to Hep C well that just makes it more emotional. Today I am in treatment and my fog has lifted. I am going to enjoy that for now along with the break my liver is getting and keep taking my TX, maybe one day later this year I will be SVR . I agree "all we can do is wait and see"

We all want the same thing for ourselves and others.

Mel

[lporterrn]

Hi Everyone - This topic digressed in wonderful ways, but it is hard to follow. I thought Mel's words were good to end on, so I am locking this topic. If anyone feels they have more to add, or want me to unlock it, just report this to the moderators. Thanks for great stuff everyone!