Need Advices On 1st Time Treatment For HCV Genotype 1b

[zain]

Hi Everyone,

I need some guidance from you and people on this forum. My mother was diagnosed with Hep C 6 years back accidentally but we did not take it seriously because our Doctors told us, there's nothing to worry about, a lot of people carry this virus and it should not be treated unless it starts damaging your liver which could take around 20 years.

However, my mom was not feeling well for last 3 months (mild nausea and fatigue), we decided to go for ALT SGPT (liver Enzyme tests) and it appeared 91 that's higher than normal ranges.

At that point, we consulted with different Doctors and they advised us multiple tests including RNA Qualitative, Liver Function Tests, genotype and MRIs.

Her RNA appeared positive and she's genotype 1b (highly uncommon in my country Pakistan). We inquired Doctors and they told us the liver is functioning fine at the moment and this is the initial stage of inflammation but we need to treat her with PegIntro + Rib for 48 weeks.

Now, I need to ask you guys what should we do at this point because one of our physicians told us about Sovaldi arriving in Pakistan and as per them it can take around 2 months to avail it in Pakistan on quite low price though there's no fixed time line for arrival.

Since, the damage is not yet done and we can wait for a couple of months to avail Sovaldi but I'm worrying about the authenticity of this news.

Read this article, http://www.thenews.com.pk/Todays-News-3-257002-Ferozsons-Lab-Gilead-Sciences-sign-agreement

Please advise, should we wait for Sovaldi which can take 2 months or longer, or should we go for the dual therapy without wasting time? My mom is 50 years old and over weight as well.

My main concern is the expectancy of Sovaldi's arrival in Pakistan (as there's no fixed date given) and the progression time frame of this disease to make serious impact on liver.

Awaiting your swift responses.

[rainbowray]

Hi Zain,
I'm Ray in California, I can give you my opinion. I am Gen 1B also and have lived with hepc for 43 years without treatment until now. I never took treatment with interferon/riba
because the results showed very poor for gen 1B and the side effects are nasty.
You Mother probably had hepc longer than 6 years but alt 91 may be out of range it is not that high. Ast is important too. That is why the fatigue. I found that drinking dandelion root tea, taking Milk Thystle herb and having a good diet is minor things that can help the fatigue. Raw vegetables, fruits, no fried foods, and stay away from Milk products, specificlly homogonized. The liver works 5 times harder to digest.
I think waiting for sovaldi/olysio  or even sovaldi/riba is better. And newer drugs are coming. The results are much better and side effects are few.
Does she have pain in the liver, or rashes on her body. If not then she is probably not having much inflammation. A good diet can calm the liver, and get rid of some of the fatty liver tissue. If it were me I would wait.

[zain]

Ray,

Thanks for your reply. Well, my mother had a blood transfusion in 1983 and I think that's when she contracted HCV. Answering your questions, she does not have pain in liver or abdomen although she has a fatty liver because of obesity and we found out in the MRI report that her gall bladder is also partially contracted (not much sure what does it mean).

I know it causes damage very slowly that most of the patients die (after living their age) without knowing about their virus but she feels continuous nausea and extreme fatigue that's affecting her life style.

Moreover, we are focusing to get her on some daily exercises and healthy food. She does not have rashes on her body but I noticed some brown spots appearing on her feet like scars.

Her AST value was 76 (less than ALT). I know 1b is tricky to treat and that's why I'm concerned. Also, our Doctor told us that she would be treated with a combination of pegintro + riba + sovaldi for 3 to 6 months so we can't run away from those injections any how :-(

Last but not the least, as per the Doctors; they can't figure out the progression time span of this virus. I mean how long can it take to seriously damage the liver. It can take years as well as a few months.

[Mike]

Hep-C is a pernicious virus and it waxes and wanes - one week the enzymes are up the next week they can be normal. The viral load can do this as well. Hep-C can also shave up to 15 years of life expectancy, regardless of presence of significant liver disease/damage.

This is why treatment can be so important.

I would stay away from a 48 weeks course of RIBV+INTF, as this can be a horrific experience.

I just finished 12 weeks of SOL+RIBV+INTF, and it was manageable (I did 48 weeks of RIBV+INTF in 2001 and would never do that again).

The new drug combinations are shorter and have less intense side effects. They are also a lot more effective. A good rule of thumb: The less the Interferon the better.

I would wait for the Sovaldi - it's a miracle drug!

Best wishes, Mike

[lporterrn]

Hi,
Interferon is hard to take, but her age (50) is actually not at all old. Women tend to do very well until around 50, then hep C starts to act more like it does in men. In short, she is unlikely to have advanced disease at her age, assuming she doesn't drink or have other complications. In the U.S., I know people in their 80's who are taking and curing with Sovaldi/Olysio and other interferon-free combos. However, I am assuming she does not have cirrhosis (how are her platelets?)

One thing that might be tricky, but if your mother would consider it, use this time to get as healthy as possible - like training for an athletic event. Losing weight and getting strong might be more helpful than anything else she can do - this way, she isn't just "waiting" - she is doing something.

She may be quite fatigued, but once her body gets used to exercise, she may find her fatigue is reduced. It's tough - most of us don't want to exercise while we were tired, but the research is so strong, that it is worth the short-term pain. Start with just 5 mins (or one min if that is too much). Then do this a few times a day, and slowly extend. It clears the head, helps with fatigue, depression, and so on. Careful of the heat. I like walking - I can even do it in the house while I am talking on the phone.

[zain]

Lucinda,

I truly appreciate your advice and yeah she doesn't drink and her platelets are in control including serum, bilirubin and albumin values.

She also got to know about diabetes 2 months back and I read that it relates to HCV. She's taking Glucophage 250 mg twice a day for controlling it and she tells about more fatigue and dizziness after taking the morning dose of this medicine.

Is diabetes really related to HCV? Moreover, I'm trying to make her do exercises but that extreme fatigue and nausea is holding her back.

[zain]

Hi Mike,

Thanks for sharing your experience with me, it really helps. So you completed the triple combination of Int + Rib + Sovaldi, how do you feel now, undetected for virus and how long was that?

I'm also waiting for Sovaldi but there's no expected time of arrival disclosed and that's making me concerned as if this can lead to some damage that can't be cured then :-(

[rainbowray]

Hi Zain,
sovaldi/riba/interferon is for 12 weeks
sovaldi/riba is for 24 weeks
sovaldi/olysio is for 12 weeks

Sovaldi/olysio shows better results in trials for 1B.

Did she get any fibrosis tests. Such as a fibrosure blood test or fibroscan.
These are just as good as a biopsy to determine liver damage. This will tell you the extent and will help you make the decision. Honestly, if it were me and I had late stage damage, I still would not do the interferon/riba for 48 weeks. Look at this forum and see how many people failed to rid the virus when they did it in the past.
Everyone I know that tried it, says don't do it. The studies show poor results also for 1B.

[Mike]

Been virus free since February and finished treatment in April. I started feeling better about a month after treatment ended. I feel great now - best in over a decade!

Best wishes, Mike

[rainbowray]

Mike,
I am happy you are cleared, and seems cured.
It has to be the sovaldi that did it, I am now on sovaldi/ribavirin without interferon for 24 weeks. The treatment is longer. I am so anxious to get results. Today is my 14 day blood draw. I hope interferon gets out of the picture soon, and I hesitated to even accept ribavirin but since sovaldi is in the combo I feel better.
Zain is trying to make the best decision for his mom, and from all the experiences thru the years and the new developments I just feel any Interferon in a combo is not my first choice.  You are one of the ones that your first treatment failed with
interferon/ribavirin and Zain is offered that now for his mom. So many are telling of success with Sovaldi in the combo, I read only one that failed but he/she was a genotype 4 (rare). Zain's mom should wait for Sovaldi to come to his country.

[Mike]

The interferon is no fun and I was hesitant to take it again. However, after reviewing the research & discussing the best treatment for my clinical picture (high VL, male, GT 1a, fibrosis, previous treatment failure, diabetic, hemochromatosis & age/length of infection) , I had the best chance of full clearance with SOL+INTF+RIBV (this included considering S/O off label and 24 weeks of SOL+RIBV and so on).

That was the deciding factor and why I moved forward with this specific treatment.

Best wishes, Mike

[zain]

Ron,

Thanks for sharing these details. Well, we had an ultrasound (MRI) test done on her abdomen and found that her liver is enlarged (fatty) due to obesity but after going through the liver function test reports and blood sample results our Doctors did not advise to have a fibrosis test.

They told us that there isn't much damage done yet so no need for biopsy. I decided to have that ultrasound and liver function tests twice a month till we're waiting for Sovaldi so that we are aware of any frequent changes (if happen).

Moreover, Olysio is not yet available in Pakistan and so as Sovaldi but we still have some expectations for the arrival of Sovaldi as per the resources. So we can't wait till we get Olysio + Sovaldi treatment in Pakistan.

We will have to do this with Int + Rib + Sovaldi and I pray that it works. Her VL is around 1,185,000, is this too high?

Awaiting your response.

[zain]

Also, can we have Rib + Sovaldi treatment for 24 weeks? As this would be much easier with no Interferon. Though our Doctors suggested 3 to 6 months period on Int + Rib + Sovaldi.

One more question, as she's also having type 2 diabetes now and she's taking glucophage 250mg with getryl. Do these drugs have bad effects on HCV patients? And does she have to take glucophage before or after meal?

Thanks!

[rainbowray]

So the trials recommend Int + Rib + Sovaldi for 12 weeks but your doctors say 3-6 months. Are you sure they were not saying  Int+Rib only.?
VL is around 1,185,000, this is not really that high. Mine has been around 3mil for years. But viral count does not factor in liver damage. A person could have a very high VL with little liver damage and a person could have a small VL and have damage.
The virus is unpredictable and very dynamic. It adapts and protects itself as if it had brains, and can mutate against different treatments. That is why an aggressive treatment is needed.
You know I had several ultra sounds showing little damage and some fatty tissue.
I had one about 6 months ago. I went to a different Hepatologist and he asked to take a fibosure test, and it showed stage 3 fibrosis. Later a fibroscan confirmed the same. So an ultra sound cannot be conclusive.
Your mom's best bet is to lose weight, eat good, exercise. You need to motivate her. Wait till Sovaldi arrives and get her cured. I can recommend a book by  Dr. Sandra Cabot called  "The Liver Cleansing Diet"  that will get rid of some or all of that fatty liver.  I have done the diet and it works, but you have to be disciplined.

[zain]

Ray,

Hepatologist told us it would depend on the response rate once we get to the treatment. I mean it could be for 3 months or 6 months with Sovaldi; depending on the response rate.

Thanks for your suggestion about Fibrosure test, I'll look for it now. Lets pray about getting Sovaldi in Pakistan as soon as possible and getting completely cured.

You seem to be really supportive, if you feel comfortable please share your contact info with me and I'll only call you for info/help. You can send a private message to me on this forum.

Thanks a lot Ray!

P.S: Don't really feel uncomfortable in sharing your contact info, I'm from Pakistan but I have been working with American entrepreneurs all over my life. 

[rainbowray]

Hey Zain,
I don't mind being supportive if I'm able too. I don't know how the PM thing works
yet and since I'm not a doctor, I kind of feel funny doing on going support. I can give my opinion from experience only. Having this Hepc for 43 years means some experience is obtained. Others have good experiences too, so be somewhat open minded and check out the trial studies on the web. The info is all there. In 4-6 months sovaldi is suppose to have a one pill treatment that is really a combo, and it has been very effective already on Gen 1. That may be available for you !!
There are other trials with other drugs too. I'm Gen 1b and two weeks into sovaldi/ribavirin   so I can update you my labs when I get them. That can assist you with your decision also.  Also, Prayer is a good idea. It works.

[Mike]

If your mom is not able to take INTF, the  protocal for GT 1a & 1b is SOL+RIBV for 24 weeks. If she can tolerate INTF, the most effective protocol is SOL+INTF+RIBV for 12 weeks.

Please note that taking SOL+INTF+RIBV after the 12 week threshold does not lead to greater success. If the virus is present at the 12 week mark, an additional 12 weeks of treatment would not be of benefit.

When taking SOL+RIBV for 24 weeks, the virus would still need to undetectable at the 12 week mark. If not, the chance of full clearance and a sustained virological response is greatly diminished.

In fact, the research suggests that if the virus is delectable after 4 weeks of treatment with SOL, the chance for a sustained virological response is reduced by 40-50%. This is true for a 12 or 24 week course.

The key is to knock the virus out in 1-4 weeks, and let the SOL (and INTF+RIBV or RIBV) work on any remaining virus for the rest of the treatment time. Basically, SOL hits the virus very hard and very quick, which doesn't give the virus a chance to adapted or respond.

Best wishes, Mike

[rainbowray]

Hi Zain,
Just want to update you on my 4 Week lab. I am undetected for HepC.
That is 4 weeks or less on sovaldi/ribavirin. I knew it would be effective. I have 4.5 months to go, but it is not so bad especially with the result for far. I am Gen 1B.
If I had no choice and was offered onlyinterferon in any combo , I would still not take the interferon, so it is a persons conviction and decision.
Hope all is well.