Hep C Discussion Forum

Kellie · Senior Member

RE: To wait for new medication

gerewolf · Member

Malcolm, Lisa, Kellie, thank you for your support and for sharing your own experiences. It's very helpful. It was good to find out that the viral load fluctuates, and that it may go up because of stress. That may help me to stop worrying, since worrying only makes things worse. The warmth and support on this forum is amazing. And people here know as much or more than doctors.

Right now I am trying to stay on a healthy diet, no drinking, eating eggs, yoghurt, drinking milk, and vegetables, and no beef. I have been swimming twice a week. I also eat dark chocolate because I found out it's healthy, but I'm not sure it's healthy for hep C. Also it's good to know that older women are steadier with regard to Hep C.

I think I will need to get a fibroscan as suggested.

Thanks again.

Loopy Lisa · Guru

Hi Julie,

It is perfectly normal to worry, I think every person in the first couple of months went through varies degrees of emotion. But I promise you this will subside when you have made a firm decision how you will progress, when you have learned as much as you can about the disease, and reading about people whom have treated and cleared, and especially those who have not.

A new diagnoses is always frightening, especially if it is totally unexpected. I was diagnosed this year and now I am very accepting of this condition. It takes a little time to not feel over whelmed. I am sure we all have moments where we wish it was gone, but the truth is we are now in a place where things could not be better, they are even curing people that were once almost a lost cause.

I have 1 million virons on my last count. My doctor told me it really is off no importance because it will go up and down with your immune system. So oceans apart doctors are saying the same things.

My doctor also told me that the blood tests are pretty indicative of damage, I had so many tests I was beginning to think I had no blood left to be infected. But as I decided I wanted to wait, she arranged a biospsy to make 100% sure that my liver was ok.

One thing my doctor did tell me was that it is very uncommon for much to change in the next few years if I don't drink and look after myself. This is mainly due to estrogen. Once menopause starts, we will progress like men unless we take HRT.

It is a very personal decision how you wish to progress, but this has to be you decision based on what you feel is right for you.

In reality a lot of us lived many years without knowing we were affected, so this is not really the issue. it is doing what is right for your peace off mind.

Try not to worry, you are in good hands once you have a diagnoses, it is not dangerous once you know, it is dangerous for those who never know.

stay strong, L x

mallani · Guru

Hi Julia,

Don't be scared. We have all had the same news, and many of us have gone out and beat the virus. Your Viral Load is medium-high, but it does fluctuate and although a low VL may do slightly better, it doesn't seem to be a big factor these days. You are actually lucky to have Geno 1b, as this has the highest barrier to resistance.

As we've said before, ultrasound doesn't show liver inflammation or damage until it's very severe. I'm cirrhotic, and my ultrasounds have been pretty normal for the last 20 years. You really need to get your liver properly assessed by Fibroscan or Biopsy, so you can make an informed decision about whether to treat now, or wait. Cheers.

Kellie · Senior Member

Hi Julie,

Please try not to be frightened. I had this virus for 34 years. I was 22 years having it before I found out.

When I found out I started getting my vl and liver function tested twice a year, along with annual ultrasounds. I continued to exercise and became very mindful of what I ate and the supplements I took. I also looked at my stress level. These are the key factors I believe in staying healthy with this.

My ultra sounds were always normal and my vl fluctuated ALOT over the years. I even got it down one time to almost UND and got as high as 8 million (during a really stressful time).

I concur with Lisa on the menopause issue. Sx from the virus increased ten-fold during peri and finally menopause. I take bio identical HRT. This seemed to slow the progression down a bit.

After being a member of this forum for awhile I see the benefit of having a Fibroscan or Biopsy, where I didn't before. It's your personal decision though.

Hang in there Julie. I believe you'll be ok whether you wait for the easier tx or decide to treat now.

I hope your day is bright

-- Edited by Kellie on Monday 11th of November 2013 04:21:15 PM

gerewolf · Member

Hello. My name's Julia. My husband, Ger, has been writing for me. I have been to several doctors and have read the responses on this forum with gratitude. I have been scared since I found out I have Hepatitis C. Today my husband told me that my viral load is over 4,000,000. This made me worry. Ger says that a doctor told him the viral load was not so important. I have had a ultrasound which found no liver damage. I'm trying to decide whether to wait until the new medication comes out. Cinnamon Girl, thank you for your helpful advice about this. It seems like because I have Gen 1b I would have to take the interferon treatment if I start now, and the new medicines for 1b won't be available for a year. Anyway, I am thinking about what to do. Ger just got me new insurance on the exchange and I'm waiting until Jan. 1 for the new insurance to kick in. I hope I can stop worrying. I feel unlucky that I have 1b. Any advice or support would be appreciated. Thanks.

Cinnamon Girl · Guru

Hi Gerald, it will be a while longer, maybe a year or so, before any all oral treatments will be available for genotype 1`s, although there are various drug combos currently in clinical trials. As Malcolm mentioned in an earlier reply, Julia would really need to have a biopsy or fibroscan to accurately determine whether or not she has any liver damage, and then she would have a much better idea of whether she should start treatment fairly soon or not. Julia has a medium viral load, and that`s nothing to really worry about. I know it must be an anxious and frustrating time for you both while you`re trying to work out the best way forward, and I hope you get some clear advice from the new doctors you`re planning to see. Best of luck!

gerewolf · Member

Thanks guys for your responses. Well, if Sofosbuvir/Ribavirin/Peginterferon are required for genotype 1, that's not good news. But if it's only 12 weeks, that would might be tolerable. I wonder how long a wait it would be before genotype 1s will be able to have an interferon-free medical treatment? By the way, my wife has not had either a fibroscan or liver biopsy. I believe her diagnosis of no liver damage is based on blood test and other tests (maybe a sono). She has a viral load of over 4,000,000.

-- Edited by gerewolf on Sunday 27th of October 2013 03:45:35 PM

mallani · Guru

Hi Gerald,

Jill is correct. Gilead have applied for FDA Approval For Sofosbuvir/Ribavirin for Genotypes 2 and 3, and Sofosbuvir/Ribavirin/Peginterferon for Genotype 1. Treatment duration is still to be decided, but is expected to be 12 weeks. It may be 24 weeks depending on the amount of liver damage. Have you found out whether Julia has had any tests to determine liver damage? That will probably influence the decision whether to wait. Cheers.

AngieV123 · Senior Member

I just talked to my doctor today about this. He said sofosbuvir is taken with ribavarin and the treatment duration is 12 weeks. I was about to start triple tx but he said it's worth a wait to see if this new drug will be rolled out soon. If for some reason it isn't available by January then I'm going to go for the triple therapy. He also said sofosbuvir is also much better tolerated. If your wife has no damage then waiting a few months probably wouldn't hurt. It will also give her time to see if anything will be changed by her new insurance. It's all really a personal decision about what she feels would be best given all her health information and doctor opinions. Good luck :)

Cinnamon Girl · Guru

Hi Gerald, yes that`s right, Gilead is currently waiting for FDA approval for sofosbuvir and it`s expected to be granted either by the end of this year or early next year. The treatment protocols that have been submitted for approval are for a sofosbuvir and ribavirin combo for genotypes 2 and 3 only, and sofosbuvir, ribavirin and interferon for genotypes 1, 4, 5 and 6, which is based on the phase 3 trial results which Gilead have submitted to the FDA. So it will be a while yet before all-oral combos are available for those with genotype 1, unfortunately, but it`s likely that a much shorter treatment duration of only 12 weeks will be required.

gerewolf · Member

Malcolm,

I wanted to ask about something you mentioned before. You said that Sofosbuvir would only be given to genotype A people in combination with interferon when it first comes out. By the way, a doctor told me that it would be available in January--he is Dr. Tobias of NY, one of the noted experts in the field who conducts research. Anyway, having read the research on sofosbuvir, it appeared that sofosbuvir in combination with ribavirin was had a 70% cure rate and was used on genotype 1 patients. So if sofosbuvir is going to be available in January, why won't it be given to genotype 1 patients in combo with ribavirin (without interferon)?

gerewolf · Member

Thanks Lisa. I'm so grateful to this forum. People here know as much or even more than doctors about Hep C.

Loopy Lisa · Guru

I have been told by my specialist I can wait or treat now it was my choice. I chose to wait. I do believe although the new treatments will still include Interferon, they are reduced to 12 weeks apposed to 24-48 weeks. If your wife wants to wait for all oral, they should be available within a year or two all being well. Waiting is not all fun though, you being aware of your status gives some problems when you want it gone! I have genoptype 3 so all oral for my genotype is available the beginning of next year all being well. All in all it would be nearly a year since diagnoses to treatment, it is do able. Good luck with your choices.

gerewolf · Member

Thanks for your comforting response, hrsetrdr. My wife has no liver damage yet, but her specialists wants her to start now. He is a Chinese doctor in Flushing NY and I'm not sure about him, so we're seeing other doctors. She's had the infection for 27 years, apparently, with no liver damage, so maybe she can wait. Also, we have to wait until her new Obamacare insurance kicks in in January.

Gerald

hrsetrdr · Guru

Hi Gerald, welcome to the forum. Waiting for newer treatments can be excruciating, I waited a year and a half from my 1st Gastroenterology visit to when the Victrelis triple treatment became available. But, my doctor had said that 'theoretically' I could live pretty much a normal life without treatment, so I did have some latitude, time-wise. I understand your wife's concern about treating with interferon, although there is a large percentage of patients that do not have lasting side effects. If your wife's new doctor's evaluation of her condition shows that she can afford to wait for the interferon-free treatment(s) in the future, then that would be a great blessing. Best wishes.

gerewolf · Member

Thanks for all the helpful advice, Matt, Teddy and Mallani. We are going to get some more opinions from doctors. It's disappointing to hear you say, Mallani, that Julia will have to use interferon in combination with the new drug. She is dreading that. I don't know whether she has had a liver biopsy or Fibroscan. Her doctor has done a few tests with her, so I have to find out. Right now we're in flux because she'll be changing insurance in January and may have to find new doctors on her network.

Teddy, sorry to hear that you've gone through 3 treatments already. I wish the best for you.

It feels good to find this forum. More later.

Gerald and Julia

mallani · Guru

Hi Gerald,

The LIPA assay is just for Genotype and sub-group. If she has had HepC for 27 years, she really needs testing to assess her liver damage. The only accurate way to do this is by liver biopsy or Fibroscan.

The new medication is Sofosbuvir (Gilead Sciences) and it will probably be approved in Dec/Jan. It will only be approved for use with Interferon/Ribavirin in Genotype 1. It may be hard to get, as there will be a bit of a rush. In another 12-18 months, interferon-free drug combos will be available, and these are more appealing. Cheers.

Matt Chris · Guru

Hello Gerald & Julia

Nice to hear from you, you have found a good place to gain valuable insight into all things HCV.

The more info. as Malcolm said, the more accurate one could be in giving insight into your questions.

But since it will only be a couple months until we see new medicines come to market in my opinion it would be wise to wait to see what your options will be.

Hep-C typically is a very slow moving disease, so being hasty in a decision should be avoided because the treatment could be anywhere from 12 weeks to 48 weeks.

Hoping you both make best choice for your condition because sometimes it take two to handle some of the treatments that HCV brings.

Matt

gerewolf · Member

Thanks for your response, Mallani. My wife's genotype is 1b. One of the tests that was given her I believe was called Siemens Veresant LIPA Assay (I believe). I looked all over the test and couldn't find a name at the top but this was at the end. I don't know her viral load. The doctor (Chinese) said she didn't have liver damage but wanted her to start treatment on the old medicine right away (interferon). Another doctor, one of the top doctors on Hep C in New York, said the new medication was going to be available in January.

mallani · Guru

Hi Gerald,

Welcome to the Forum.

Can you tell us which tests were performed to show your wife has no liver damage? If she's had a biopsy or Fibroscan that is probably correct. Can you also post her Genotype and Viral Load, so we can give a better indication. Cheers.

TeddyTrout · Senior Member

Because I have been through this treatment 3 times now, I would personally wait if I had my druthers.

gerewolf · Member

My wife Julia has been diagnosed with Hep C. She is Chinese and apparently when she had an hysterectomy in China 27 years ago a blood transfusion was infected. Tests have shown no liver damage. We have talked to 3 doctors, one advised starting treatment right away, another said we could wait until the new medicine by Gilead is approved, still another said that if she's had the infection 27 years without developing liver damage, treatment isn't necessary right away but she should be closely monitored for any new symptoms, etc. The last doctor we spoke to also said the new medication would be out in January. Julia, naturally wants to at least wait for the new medication, which doesn't have the severe side effects and can be taken by mouth.

So we're not quite sure which doctor to listen to. Any feedback?

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