Is my HCV treatment working

[munish1972]

Hi i was diagnosed with HCV 6 months back with viral load of 250000,
i took some ayurvedic medicines, now my viral load is 85000.
liver elastography results are
fatty infiltration of liver with normal stiffness of the liver parenchyma noted on elastogrpahy with arfi value of .93 - 1.32 mt/sec. liver is normal in size 140 mm

AST and ALT elevated to 60 and 118 in two months.

is my treatment working, i really don't have any complications

[curiouslady1]

Dear Munish,  I have lived outside North America and know how painfully out of touch one can become from the latest innovations.  The invention of the internet and forums like this one have no doubt saved many lives.  In your case I see the problem as many faceted.  You not only do not have access to the medications that we have access to but also most likely do not have access to knowledgeable practitioners even if you could get the meds. and possibly do not have access or ability to evaluate your condition properly so, of course, you try to do what you can.  

Aaron also lives in your area of the world (the same hemisphere at any rate) and I agree with him that you could look for clinical trials (experiments) which would be close to you.  A good clinical trial will provide the practitioners, the facility, the support, the assessment and the follow up in addition to the treatment.  There are a number of pharmaceutical companies from the US that hold trials throughout the world though you may still have to travel within your own country to get to one.  

I would also recommend that you take measures to keep anxiety/fear in check.  Many believe that the fear around this infection is one of the HCV patient's worst enemies.  It can cause a person to plunge into unproven and potentially harmful remedies or worsen symptoms and side effects.  Among the best ways to counteract such fear is to educate yourself about the infection and liver disease in general and your condition in particular.  The internet and forums like this one can give you a lot of resources for finding out the costs of various tests and assessment procedures and which ones you can get in your country and which you will need to travel for.  

Familiarizing yourself with this site and all its resources and the people you find the most helpful to your situation would also be helpful I think.  You can send and receive notes and private messages, keep a journal and contribute to that of others, post pictures, socialize.  

I am also one who opted for not treating with the standard of care.  My life situation was such that I could not afford to be gone from my work so I waited many years until there was a treatment option I felt comfortable with.  However, I did not try to treat myself with supplements and other private remedies (well, I did briefly until my doc lightheartedly suggested that I might be simply suppressing some of the numbers but doing nothing for the disease or the infection).  

Watchful waiting or what I term as wait and see can be a procedure of choice for this infection.  I was lucky as my fibrosis did not progress and my liver fibrosis was only f=1 after 40 years.  I am treating now in a trial with all oral medications and am very happy with it as you can see from my journals and, not only are my side effects minimal but my business has picked up tremendously as I no longer feel like I have a heavy weight holding me back.  Since I have started on my own journey I have found that, if I had treated years ago, I most likely would not have cleared the infection and would have possibly destroyed my career.  On the other hand it is a decision that carries its own negative consequence.  I cannot say what you ought to do as we don't even know what type of Hepatitis C you have nor what the condition of your liver really is.  But there are many ways to look at this situation and what to do about it.  

I would also add a note about lab numbers.  Before I started, my Viral Load was 13 million one day, 4 million the next and 9 million the next.  My AST/ALT has fluctuated for years.  Your results may calm your fears somewhat by leading you to believe you are positively influencing your condition even when you are really having no influence at all.  This infection and the disease is notoriously random.  I have diabetes, thyroid disease and fatty liver and have a rather poor diet and erratic exercise regimen.  Yet I have been spared significant disease.  I know many who are very scrupulous about diet, lifestyle, supplements etc. and who have progressed to significant disease nonetheless.  Different genes I guess.  Anyway, I did want to give you another perspective.   Keep in touch with us and best wishes and luck to you.

[copyman]

You can not rely on blood tests and Fibroscan. Liver enzymes and viral loads fluctuate all the time. You may have seen the same results without doing anything.  The herbs you are taking will never eradicate the virus. The only option that will "cure" you are the harsh drugs. Adding one of the new drugs will increase odds of successful treatment to 70-80%

best of luck

[Advocate1955]

My husband has worked full time through two previous therapies and is currently working full time through a third therapy (Interferon/Ribavirin/Incivek) that so far IS WORKING.  The only times he has missed work since his diagnosis of HCV have been for procedures such as liver biopsies and colonoscopies.  I will lend my voice of caution to the others above.  In 2007, when my husband was first diagnosed, he was between F 1 and F2 with only slight bridging fibrosis, according to his first liver biopsy.  When he had his second biopsy in 2010, he had progressed from that level of liver damage to between stage 1 and stage 2 of cirrhosis with nodules and moderate scarring.  To us, that was quite shocking to learn that in less than 3 years the damage to his liver had progressed.  He does not have any symptoms of illness with his HCV although he has had it for 35+ years.  As I'm sure you know, the damage to the liver once cirrhosis begins, is irreversible, even if the HCV is cleared with a later treatment.  So, when you're thinking about whether to treat or not, please keep in mind that there is no way to know how quickly or slowly HCV will damage your liver and to what extent.  The medical issues that accompany end stage liver disease are horrific, costly, and deadly.  Treatment when you are well is better than treatment when you are sick, and if the patient is too sick, the treatment can be too dangerous.  Losing a loved one to liver failure is, I'm sure, unimaginably painful.
Advocate 1955

[HectorSF]

I am very sorry to here about the position you are in. Treatment is expensive and some people are not able to work during times of treatment. But keep in mind many people are able to work during treatment so it is not guaranteed you won't be about to work. The only way you will know is to try treatment.

"is my treatment working"
No. Nothing indicates that it is working, I'm afraid.

"i really don't have any complications"
The vast majority of patients with hepatitis C have no complications or symptoms. That is why most people who are infected with hepatitis C don't know they are infected. Many people only find out they have hepatitis C after the virus has damaged their livers and they become ill from advanced liver disease. At that time they will need a liver transplant to continue living as no one can live when the liver fails.

If you have studied engineering or math you will know that there is essentially no difference between 250,000 and 85,000 on the logarithmic scale, which is how viral load is measured. 2 log is a significant difference in viral load and is used to indicate that treatment is working. So if you viral load is not reduced to 2,500 or more, there is no difference no real difference in the amount of virus in your body. As Will said in his post, viral levels vary less then 1 log from day to day, hour to hour.

Abnormal AST and ALT results indicate that the virus is still damaging you liver and no blood value will tell you how damaged your liver is.

If I where you I would think about transfering to the U.S. and get a full workup of the condition of your hepatitis C and liver disease. I understand this is a hardship and will cost money but depending on where in the U.S. you are located you may be able to get some low cost medical services. And you will know exactly where you stand with your health. Also in the U.S. you may be able to get the drugs for treatment at no cost.
I am not sure who you are seeing in India and how much they know about hep C and liver disease. It is very important to see the best doctor you can as many doctors even here in the U.S. know little about hepatitis C and liver disease. You need to see a gastroenterologist or hepatologist. If you are sure you can wait for future treatment in a few years great, but if you progress to cirrhosis of the liver or advanced fibrosis the odds of the treatment drugs curing your hepatitis C will become much less. And if you develop advanced liver disease, you and your family will really be in a difficult position as you will not be able to work anymore and in very advanced liver disease, (sometimes call End-Stage Liver Disease) can be a fatal disease.

Let us know what you decide.
Best of luck to you.
Hector

[Aaron57]

Your Tx is not Tx as Will said ..

India also has HCV clinical trials .. maybe there is one for you ..

http://ctri.nic.in/Clinicaltrials/login.php

[munish1972]

Enzymes actually reduced fro ASt 90 ALT 140 to AST 60 and ALT 118, worst case i can take transfer to US in next months if my current alternate medicine does not work.

[frijole]

munish
I have compassion for your situation.  I do know that there have been some people on this forum who have used Chinese herbs prior to treatment and it elevated their liver enzymes substantially and they had to get that under control before treating.  I think you must be very careful.

  It sounds like you are really stuck - you want to treat but are afraid you won't be able to work.  Many of us work through treatment but some of us can't. You don't know until you try.  I don't think you will be able to get the new PIs in India but I do hope the pegalyted interferon is available.  

Good luck on all this.  Just be careful and watch those enzymes.
frijole

[Lifenet62]

I'd go for milk thistle vit d3 alpha lipolic acid tummeric artichoke magnesium calcium b vitamins no iron small amts of vit a, again IF inflammed only. Best of luck to you.   Get the biopsy.

[munish1972]

No these medicines are complete herbal extract, and does not have lead, mercury and arsenic?

[Lifenet62]

Unless you live inthe United States or Canada, at this time the only treatment available to then will be the SOC OF interferon& riba which does have the 40% cure rate that you did refer to. Frijole is on point reg the mercury etc. I am certain this tx is costly too. There are many healthier alternatives IF you are inflamed only  

[munish1972]

Thanks for replying, i live in India where nothing is free,  i can support my treatment myself but only if i am able to work under treatment

[willbb]

is my treatment working,  
-------------------------------------------------
From your post ...you are not on treatment. There is only one treatment protocol by study data approved to date that will eradicate HCV virus and that is Interferon/ribiviran and either Incivek or Victrelis for Geno type1.
These protocols are 70  -80 % successful.  and currently there are many trials going on experimenting with other drugs ..that speculatively could be on the market in a few years from now.

Viral loads fluctuate constantly and the amount has no bearing on liver damage being done..

Best to you...
Will

[frijole]

You have less than a 1-log drop in 6 months?  No, your treatment is not working.  Those of us on the new triple therapies are seeing zero viral load four weeks after the introduction of the protease inhibitors.

Your viral load can vary from 250,000 to 85,000 in a day, doing nothing.

Yes, these treatment drugs are toxic and not fun, but while we are ridding ourselves of virus, your liver is still suffering damage.  At least that is the way I see it.

Ayurveda (Sanskrit: आयुर्वेद; Āyurveda, "the complete knowledge for long life"; /ˌaɪ.ərˈveɪdə/[1]) or ayurvedic medicine is a system of traditional medicine native to India[2] and a form of alternative medicine.[3] In Sanskrit, words āyus, meaning "longevity", and veda, meaning "knowledge" or "science".[2][4] The earliest literature on Indian medical practice appeared during the Vedic period in India,[3] i.e., in the mid-second millennium BCE. The Suśruta Saṃhitā and the Caraka Saṃhitā are encyclopedias of medicine compiled from various sources from the mid-first millennium BCE to about 500 CE.[5] They are among the foundational works of Ayurveda. Over the following centuries, ayurvedic practitioners developed a number of medicinal preparations and surgical procedures for the treatment of various ailments.[6]

Current practices derived (or reportedly derived) from Ayurvedic medicine are regarded as part of complementary and alternative medicine.[7]

Safety concerns have been raised about Ayurveda, with two U.S. studies finding about 20% of Ayurvedic treatments tested contained toxic levels of heavy metals such as lead, mercury and arsenic. Other concerns include the use of herbs that contain toxic compounds and the lack of quality control in Ayurvedic facilities

So tell me, munish, are you taking lead, mercury and arsenic?

frijole

[Lifenet62]

Where do you live?

[Lifenet62]

If you are stage 1 then yes you can wait and if it were me I would. However, and I state HOWEVER i would suggest the real biopsy which is easy and not at all as bad as it sounds, so you will truely know where you stand.
Btw depending on Your income and family size of dependants wage/ earners you can receive the meds  and possibly bloodwork, too for free.

[munish1972]

No it was elstography which is alternative to biopsy, i am software engineer, i never had any sickness not even fever for atleast 20 years, don't have any medical insurance for hcv in my country

[Lifenet62]

Did you have a needle biopsy?  The real deal is finding exactly where you stand is through this method.  It is wonderful to be doing anything proactive for your HCV.
I am working still. What type of work do you do?  Have any time accrued vacation or sick??  Have a support grp or extend caregiver?  

[munish1972]

treatment is expensive and i am not in position to afford and leave my job, i am currently don't have any fibrosis at all, so my doctor told me that i can wait for some time, meanwhile i tried this medicine which might take 2-3 years to erradicate. Even if i don't take any alteranate medicine i can wait for some time without treatment is this correct.

[Lifenet62]

With the new triple tx for geno1, cure rates can be up to 90% with a CC IL 28b gene.  ( i am on Incivek currently) ( i am geno 1a IL 28b CC  late stage 2 early stage 3 bridge fibrosis and major scarring).
With a CT or TT cure rates to 78%.  

[munish1972]

i have provided elsatography results which is kind of biopsy result only

[munish1972]

i have geno 1, pcr repeted after 24 weeks, i am too afraid to take treatment becoz of side effects and being only earning member in family, so took ayurvedic medicines

[Lifenet62]

Yup i agree w susan. This is not a significant drop in VL or alt/ast. Have you had a liver biopsy yet?  It is that level of either inflamation and or fibrosis / scarring that also plays a major factor.
What is your geno type?  Have you had an IL28b gene test done??

[suezeeque]

"geno 1 has success rate of 40% with the poisonous option"

This is untrue.

I'd like to see the proven success rate of you option.

[munish1972]

This is what i want to know, geno 1 has success rate of 40% with the poisonous option, but if it is improving slightly with non toxic medicine, is it worth to continue ?