Huey wrote:

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A new unopened bottle of Sovaldi Weight is 27.2 grams.  This is without the drug info sheet that comes with every bottle

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 Thanks a lot Huey!

Hey Doni,

I did a bit of research into the Nigella Sativa (Black Cumin Seed) and find it spoken of very highly in supplemental circles. If you're a fan of supplements, you must also be aware that they can be quite harmful and counter effective when combined with prescriptive medications. It's definitely detrimental to any HCV protocol and it's proven that comsumption of them will alter your blood test values. It's not something you want to consider if you're going to go forward with treatment. I understand your brother in law's dislike of Interferon, but it has provided many medical benefits over many years of use. If he was the individual that recommended the "Black Seed" treatment, I wanted to point out one comment about Nigella Sativa. He might want to reconsider his recommendation!

"Hundreds of studies have been conducted on black cumin which have shown that compounds from the seeds help fight diseases by boosting the production of bone marrow, natural interferon, and immune cells."

Learn more: http://www.naturalnews.com/030800_cumin_seeds_health.html##ixzz371vev37A

Tig

Hi Doni,

Interesting comments from your brother-in-law. A surgeon!

Interferon is a naturally occurring compound produced by the body. Sure there may be some long-term effects in some people after prolonged use. They are better than the problems of liver failure!   I've injected the stuff for a total of 2.75 years from 1996 to 2012. I don't think I have any residual problems and in my case, Interferon helped me clear the virus.

His comments show a lack of knowledge about HCV. Interferon will still be used for many years in many countries.

A new unopened bottle of Sovaldi Weight is 67.2 grams.  This is without the drug info sheet that comes with every bottle

Hi Doni,

If you read on a common asprin the side-effects it can cause headaches :P

I have read a lot of information on interferon, most of the long term users like 48 weeks seem to be the people that are long term affected simply because its 2 years of use. Other walk away without a single problem. I think overall health before you begin is important. I think 3 months is too short for long term complications, it is 12 shots to being cured. I could be wrong but most people after 3 months don't seem to have much to say after recovery has begun apart from they recovered! 

I was scared too of these meds, interferon didn't have much affect on me, Riba did, but I'm on round two soon.

Good luck with whatever you decide. :D

Every time I am getting interesting advice like this one for example.

My brother in law, who is a very experienced gastro surgeon in his fifties says it is insane to pump in interferon drug in my body. He says interferon is not fully studied and it is still unknown what the long term effects can be.

I explained him that it will be for three months only but he argues that I should allow my body fight off the virus. Suggests alternative method like black seeds - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646144/.

Doni wrote:

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I am in various forums on different topics, and i must admit people on this one are sincere, understanding, helpful and very supportive, though I am so new here. Thanks a lot guys!

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 Still working on getting you the weight of the sovaldi. Doni

Huey wrote:

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I am getting ready to leave for my job now.  I know what your are talking about,, The thing to do is express it...find someone to talk to and unload on them,,, it will help/

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Just drop a big fat "unload" on them.  lol  You are so funny, Huey. 

Better pick the right person/people to unload on or it may not help!  Once you unload you will be not only dealing with your own feelings about your disease but their feelings as well.  Many people don't cope too well with this information.  Unload here.  We get it.  

Try not to worry, Doni.  It is a good idea to have the fibroscan but very unlikely you have severe liver fibrosis.  The test results should confirm that and give you some peace of mind.  

You actually have a low viral load at only about half a million and your elevated ALT/AST is probably just a reflection of your liver being very active in its battle against the virus.  

Given your age and the new tx drugs on the horizon getting rid of this virus should be relatively easy.  Malcolm is so right about taking your time and not becoming overly anxious about it.  Best wishes. 

Hi Doni,

Relax! At your age you won't have much liver damage. Have your Fibroscan and tell us the numbers.

My Fibroscan in 2008 showed cirrhosis, and back then, we didn't have any new drugs to try, so I just took 10-15 years off my life expectancy.

With all the new drugs, you will clear the virus. If it takes a year or two, so what. Just go with the flow.....................

I am getting ready to leave for my job now.  I know what your are talking about,, The thing to do is express it...find someone to talk to and unload on them,,, it will help/

I have cancelled my liver biopsy for the time being and signed up for fibroscan. I will have it done after 2 days. Till then I am really nervous thinking if I they find advanced fibrosis or cirrhosis of my liver. Actually I have been thinking so much about this lately that I can't work properly. These things have really got me in the center of anxiety zone.

CT determination of fibrosis leaves room for improvement, particularly in it's beginning stages. To rely on it for early diagnosis leaves you open to progression. An ECHO is useless in determining fibrosis, it is a cardiac ultrasound study, not hepatic. Whether you're a fan of invasive hepatic biopsy, it remains the definitive test to determine fibrosis. Imperfect or not, it remains a gold standard. It's wise to note as well that there are non cirrhotic (fibrotic)  causes of portal hypertension. 

Tig

Taking a Biopsy just to find out what condition the liver is in so the insurance is happy is not the coarse of action I recommend.  What is important is not the fibrosis but the portal hypertension it causes.you can test for this without a invasive procedure. This can be done with a CT scan or a ECHO.  Best thing for your Dr. to do is to Test your Gallbladder using one of these test and look at your portal circulation wile he is there , if you have any restrictions, it will be seen., the restrictions would be caused by the fibrosis . If you don't see any restrictions, then if you have any fibrosis it is not bad enough to cause problems.  You should have your gallbladder looked at anyway. and the insurance tend to pay for this as preventive.

  I am going to have my gallbladder removed and ask if the biopsy can be done then wile they are there, but if i was not needing my bladder out anyway, I would stay away from biopsy if i could.

Tig56 wrote:

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There comes a time to have faith in your health care team, seek their advice and trust them. _____________________________________________________________________________

True enough but not all doctors advise you of all your options.  Some simply don't have the time.  Moreover, consult 3 docs and you may get 3 very different opinions.  

Being an active participant in one's own medical decisions, particularly when it comes to hepc, is just good sense.  

There is a lot of information available on everything medical. I also know if you spend all day looking for supportive information, you're going to find exactly what you're looking for. You're also going to find enough information to contradict what you spent all day looking for. There comes a time to have faith in your health care team, seek their advice and trust them. Good luck...

Tig

Doni wrote:

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Thanks for advice. My doctor said biopsy is the gold standard and gives more idea about the liver condition. I still didn't have it done, so maybe i will ask him to do the fibroscan for the starters. I really never had any surgery procedure and not really excited about being cut through in my abdomen.

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The term "gold standard" (also called  the "imperfect gold standard") has frequently been used to describe and justify liver biopsies but whether it is the gold standard depends on a number of factors including the purpose of the procedure and the biopsy itself.  

Liver biopsies are performed in a number of different ways and often have significant sampling errors.  I would encourage you to do some research and make sure you understand the purpose of the biopsy, the type of biopsy, and the risks and benefits of the surgical procedure.  I am not attempting to dissuade you from having a liver biopsy but simply encouraging you to explore your options carefully and discuss them with your hepatologist.  While serious complications are rare they do happen so there should be a good reason for performing a biopsy, as opposed to a less invasive method, imho.

A few years ago The International Conference on Viral Hepatitis posed the question of whether liver biopsies were in fact the gold standard.  You can find their balanced answers to this question at:  chrome-extension://bpmcpldpdmajfigpchkicefoigmkfalc/views/app.html

This is a popular and controversial topic so there is a great deal of information available.

Like every invasive procedure, there is a risk of complications. I have had 3 biopsies and experienced zero complications from the procedure. If you have fiboscan available in your area, I would look into it, but fibroscan is known for questionable results on both ends of the diagnostic scale. The biopsy is considered most reliable and I wouldn't be afraid to go through with it if the opportunity presents itself. It's very straightforward and can be done in at a walk in clinic or day surgery center in a few hours time. 

Tig

Turnsit wrote:

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Do the fibro scan, I just had one, nothing to it. 

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I recently had my second one and I can't get over how easy they are.  Lie back, lift up your blouse/shirt, doc runs this magic wand across your liver area, bada bing bada bam, it is over.  Easier and faster than an ultrasound.

The bizarre thing is that most (if not all) US insurance companies aren't yet paying for them and they were FDA approved in 2012.  My doc told me this is because the insurance industry hasn't yet figured out a billing "code" for fibroscan tests.  Jesus, Mary, and Joseph!  How long does it take to create a "code?"  

I had a biopsy at an excellent hospital "university of  Pittsburh" i almost bled to death. Do the fibro scan, I just had one, nothing to it. The biopsy was in 2004. Now on Solvaldi and Olysio, 2004 did a year of Interferon shots and Ribavarin.

Doni wrote:

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Thanks a lot for your support. If I want to start treatment whether I have liver inflammation or no, does it still make sense to do biopsy? Because in any case, I want to to get rid of this monster.

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 Hi Doni:

It does still make sense to have a liver fibrosis assessment and if you prefer not to do a biopsy you could get a fibroscan instead.  Fibroscan results are just as reliable for determining whether you have severe fibrosis/cirrhosis.  Fibroscan is entirely non invasive and also happens to be less expensive than biopsy.  Fibroscan has been used in European and other countries for many years and was recently approved in the US. 

The reason it is important to have your level of fibrosis assessed is not only to help decide the urgency of treatment but also, in case you have extensive liver damage, you can continue to monitor it.  That isn't something you want to ignore.  

You are young but it is not certain how long you have had HCV.  There are young people who have cirrhosis.  I recall a woman who posted here, who was around 30, and already had cirrhosis.  She happened to contract the disease at birth but it is certainly possible to have contracted it later and still progress to cirrhosis in your 30s.  Your elevated ALT/AST, as well as some of your symptoms, are not conclusive of extensive liver fibrosis but do suggest the need to further explore your liver damage.  Best wishes.

I live in the USA , I have the real thing, here is some photo's of the bottle the pill , I do not have a scale,"sorry dont sell drugs" but I can use my daughters gram scale  (She is a Hairdresser)to get you a weight of the full bottle and the pill itself, later. 

This will at least give you an idea what it is supposed to look like..  Make sure everything matches,  The fonts on the bottle,, look at those especially,  if the fonts are not the same,as on the bottle, is is most likely a forgery

Hi Doni,

I would enquire about the source of Sovaldi. Although it has been discussed, there has been no formal announcement by any of the reputable Indian Pharma's. Cipla has been mentioned, but there would have been a press release if a generic Sovaldi was now available. India is renowned for selling 'drugs' cheaply- some of them don't have any active ingredient! Ask where the Sovaldi is manufactured and the name of the Company. If they won't tell you, say goodbye!

Hi all,

Thanks a lot for your support. If I want to start treatment whether I have liver inflammation or no, does it still make sense to do biopsy? Because in any case, I want to to get rid of this monster.

I was looking for treatment options and have come up to the following offer from Global Hospitals & Health City, Bangalore-India through organization called We Care India. The price seems so cheap compared to the original cost of Sovaldi, that I am afraid there may be something wrong with this. How can I check and make sure this is something I might go ahead with?

Dear Doni

Treatment Plan: It seems that the patient is suffering hepatitis C viral infection. HCV RNA is positive and liver function tests suggest that he has active hepatitis. To consider further treatment it would be essential to know the hepatitis C viral genotype and an ultrasound scan of the abdomen. Liver biopsy is an optional consideration and not mandatory. As desired by the patient, combination treatment with Pegylated Interferon, Ribavirin and Sofosbuvir is possible for duration of 12 weeks.

Approximate cost & duration of stay:

• Evaluation may approximate cost around 750 USD to 1000 USD on Outpatient basis.
  
• Medical Treatment may approximately cost around 1200 USD to 2200 USD on Outpatient basis.
  
• Patient may need 7-10 days of stay in India.

For Outside Stay: - We have our Guest house Kuteera which is a KM away from the hospital.  The tariff for Guest house would be for Single Occupancy USD 30/day. We also have corporate tie ups with service apartments & the tariff would be approx USD 40-70 per day with complimentary breakfast.

Hi Doni

Welcome to the forum

My Experiance from a USA insurance prospective..

  Your treatment consists of 3 parts Dr visits , Lab work   blood work  testing etc.  and The Drug prescription. All three are handled differently in my insurance . The most important is the prescription portion as sovaldi carries a hefty price tag but in your genotype appx 90% cure rate . Your biopsy is done on an outpatient basis here but  really no big deal, they will be concerned with internal bleeding which is rare.... Ive had 2 , one just because my first one was too good for my ALT readings near 700.

It sounds like your Dr is on the right track and you will find all kinds of people here who can give you information from a patient perspective.

Good luck

Hello Mallani,

Yes I signed up for biopsy and will have it done soon. By the way, the doctor I was seeing in Welcare hospital yesterday offered me 12 week Sovaldi+PEG/RBV treatment. So I suppose the drug is available in UAE as well, though priced at full 84,000 USD.

To be honest, I am willing to start treatment even if my biopsy will show that treatment is not urgent... Issues as lack of appetite, slight fatigue, stomach cramps and etc are really bothering me, and I am relating this to HCV.

By the way, can the treatment of HCV fall into day-care treatment category? As I have 1.5 mln USD benefit for inpatient and day-care, but outpatient treatment is limited to 7,750 USD.

Hi Doni,

I worked for 6 years as Chief of Radiology at Tawam Hospital, Al Ain, and still have some friends there and at Rashid Hospital, Dubai. I'm told UAE Nationals are being sent to Houston for Sovaldi treatment. The Victrelis triple is available at some hospitals in the UAE. If you get a biopsy, it will tell you how urgent treatment is. As Tig said, it's not a big deal- I've had 3, with no problems. Evidently Merck have a deal with the UAE, so I'm not sure of the costing for Victrelis. Over here, my 48 weeks of Rx with the Victrelis triple cost about $100k.

Let us know what you decide. Cheers- getting help may be harder during Ramadan.

Hi Doni,

While the biopsy procedure is invasive, and like any invasive procedure, can have risks, I don't consider it dangerous at all. I've had three biopsies during my years with HCV and experienced no problems whatsoever. It still remains the "gold standard" of diagnositic procedures to determine your level of fibrosis. If you get the opportunity to have the biopsy, look at it as a means to an end. You will find out exactly where you stand regarding the inflammation and fibrosis. Once completed, it's not something you will probably ever have to do again. It's not difficult and can be completed in a few hours time with minimal discomfort if any. Good luck...

Tig

Doni wrote:

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Hello Huey,

I was an exchange student in America when I was 16, and I did meet some beautiful hippie women then :).

Thanks for the advice. Actually I just came back from my doctor, he offered sovaldi involved treatment, but only if treatment is necessary as per biopsy results. So I am planning to make my insurance company quite happy very soon (I hope they will not reject). Now my wife is freaking out that she doesn't want me to do biopsy as this is a dangerous procedure. So all fun is just starting for me.

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 Euro women are more mature than American .  That is why they are called Byrd s in London and Chicks in Chicago.

Hello Huey,

I was an exchange student in America when I was 16, and I did meet some beautiful hippie women then :).

Thanks for the advice. Actually I just came back from my doctor, he offered sovaldi involved treatment, but only if treatment is necessary as per biopsy results. So I am planning to make my insurance company quite happy very soon (I hope they will not reject). Now my wife is freaking out that she doesn't want me to do biopsy as this is a dangerous procedure. So all fun is just starting for me.

Hi Doni,  I bet you never thought you would be chatting with an American Hippie!  Well you are.  ( I think it was wrong , what happened to Pussy Riot)

 I don't think the question should be "What do I do Now?"  but instead Ware do I go?   , Tell your boss you need some Vegemite and go visit Mallani and Cinn Girl.  On a post here somewhere I show that Australia is number one ranking in quality of medical care and USA... Almost Last!

We are all in this together Keep your stick on the ice. (Red Green Show),,

Hi Mallani,

Yes, I also had the feeling that January test was incorrect. I googled Sovaldi in UAE several times and didn't find anything relevant. My insurance covers worldwide except for USA, maybe I can get access to Sovaldi somewhere else? And to be honest, I can't find a good hepatologist in Dubai either.

Hi Doni,

I'm afraid there is no doubt. You have chronic HepC, and have quite a high ALT, indicating current inflammation. Your PCR test in January was obviously incorrect.

In Dubai, only UAE Nationals can access Sovaldi. If you're Genotype 1, ask your doctor what treatment options you have. Victrelis or Incivek should be available as triple therapy with Peginterferon and Ribavirin.

You may need a biopsy to assess your liver stage. Good luck.

Hi Doni,

Well, the fact that your result came back as `Not Detected` indicates that you no longer have an active infection.  But it would be sensible to speak with your doctor about the raised ALT levels and ongoing fatigue.

Wishing much happiness to you and your family, enjoy your life together! 

Cinnamon Girl wrote:

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Hi again Doni, welcome back!

Well, it looks very likely that your immune system has cleared the Hep C virus on its own during the last 6 months since you received your diagnosis.  That does happen in some cases, during the initial `acute phase` of an HCV infection.

Your ALT levels are still higher that you`d expect to see but there could be several reasons for that, and the same goes for the symptoms of fatigue that you are still experiencing. 

You`ll need to speak to your doctor and have this result confirmed but it looks as though you are free from Hep C, which is excellent news! 

 

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 Thanks a lot! My wife was in tears when she hear the news. I really hope I have cleared the virus. But I'm very suspicious on ALT as this may indicate that I still have the virus but PCR showed negative because of virus being intermittent.

Hi again Doni, welcome back!

Well, it looks very likely that your immune system has cleared the Hep C virus on its own during the last 6 months since you received your diagnosis.  That does happen in some cases, during the initial `acute phase` of an HCV infection.

Your ALT levels are still higher that you`d expect to see but there could be several reasons for that, and the same goes for the symptoms of fatigue that you are still experiencing. 

You`ll need to speak to your doctor and have this result confirmed but it looks as though you are free from Hep C, which is excellent news! 

Hello dear friends!

I am more confused now since I don't know what is wrong with my HCV diagnosis.

 Last year my alt was 177, ast 55, HCV PCR 1million.

Today I got my recent test results to start treatment but this time alt 100, ast 36, HCV PCR NOT DETECTED.

I didn't see the doctor yet, but I am very confused now - do I have HCV or no. I still didn't lose weight and I still have fatigue.

That`s great, best of luck then and keep us posted.  I`m glad you found the information helpful. 

Hi Cinnamon Girl, excellent link! Thank you very much! And yes, I would love to try newest treatment. If not available in Dubai, I will travel to the country where it's available as my insurance covers the whole world, except for limitations in the US :)

Hi Doni, welcome to the forum, you`ll find that this a very friendly and supportive group. 

The diagnosis of Hep C comes as a shock to most people and not everyone knows how or when they were infected.  It could have been when you had your dental work done but there`s no way of knowing for sure, and the main thing now is that you`re moving forward towards getting treatment for it.  I`m not sure what your options are in Dubai, but I should imagine they are probably limited, and you`re quite likely to be doing a course of pegylated interferon injections and ribavirin pills, whatever your genotype is.  Your doctor will explain it all to you anyway.

As Marktrux said, it`s quite possible that your feelings of tiredness and general malaise are caused by the Hep C, but it varies a lot from person to person whether or not they get any symptoms, and many people have none at all.

It`s not surprising that you`re feeling very frustrated and anxious when you have a family and a responsible job, but you`re doing the right thing by following medical advice.

Here`s a link to an article you might find useful, it contains a lot of basic information for anyone newly diagnosed.

http://www.hcvadvocate.org/hepatitis/First%20Steps/First%20Steps%20with%20Hepatitis%20C%20for%20the%20Newly%20Diagnosed.pdf

Best of luck, stay in touch!    ~ Jill

The symptoms you mentioned are all associated with hep c, but few of us notice them. Most of us have them to a degree but they progress so slowly that we tend to not see them. You must be really in-tune with your body to see them that quickly, which is a good thing. There are many great treatment options available now and many more in the near future. Your Dr. will test you for your genotype(simple blood test) and  liver damage(biopsy or blood test) to determine which route of treatment best suits your case. The treatment options currently available can be harsh but work is not out of the question. I just finished 48 week of triple treatment with Incivek on May 2. In that 48 weeks I worked 6.5 days a week and only missed 1 day total. Treatment does affect everyone differently but a good number of us are able to carry on a near-normal life while being treated. There are many great people on the forum and they can be very helpful with the side effects. Having been there ourselves, nothing is a helpful as experience. Good luck and stay positive.

Hi Doni,

           welcome to the forum. You will get here many informations and reports from other hcv-infected.

I have known my infection for 18 months, I think I got it in 1988. Because my liver is fairly good, I got the advice to

wait for an interferonfree therapie. I have started it in april. The kind of your therapie depends on the genotype of the virus, do you know it?.  

with best regards

Dear All,

I would like to say hi to everyone and introduce myself and my situation in short.

A month ago I started having low grade fever in the evenings and mornings, to which fatigue was added further. The doctors have done loads of blood tests and found CMV, EBV and Hep C in my blood. Hep C was confirmed with viral load test showing around 1 million units.

We have just had a new baby with my wife and I am confused how and when I could get this disease. The only suspicion I have is having my wisdom tooth extracted in Dec 2012... These days I feel just awful, very tired, sleepy all the time, no appetite. My doctor is also checking for Hep B and D now and is saying will start treatment after 1 month.

I am very frustrated with the way I am feeling right now - tired, depressed...

Why would these symptoms come up just now from nowhere?

I am a general manager and have too much responsibility at work, and my condition is really not helping me right now.

Well, not very short introduction, but I hope I will find answers and support on this forum.

By the way, I am an expatriate from former USSR, working in Dubai.

Hi again Doni, you posted while I was still typing!  Well, if you`re going to start treatment as soon as possible then a biopsy may not be necessary.  

The advantage of a biopsy is that it will give your doctor a lot more information about the health of your liver than an ultrasound will, and if you have little or no damage then its possible that you could afford to wait a while longer before doing treatment. 

After doing a bit more searching it looks possible that the newer `triple therapy` might be available in Dubai by now, and if so that would be a suitable treatment for genotype 1.  Your doctor will tell you more about it anyway.

-- Edited by Cinnamon Girl on Wednesday 5th of June 2013 06:34:14 PM