Hep C Discussion Forum

Andreaz · Newbie

RE: Starting triple therapy tomorrow.

Zlikster · Guru

Hi Andreas, are you sure they did PCR RNA test beside hcv antibodies? You can have hcv antibodies in your blood, but be negative on viral load, which means you once had hepatitis c, but your body/im.sys cleared virus (lucky 15-20% of people). Since acute phase is considered to be aprox 6 months, after if virus ain't cleared you move into chronic phase.

there are natural remedies to help your immune sys fight of virus in acute phase, unfortunatley majority of people realise they have hcv deep into chronic phase of infection. As i said, you could be lucky one that made it to fight of virus in acute phase or it just might be false positive hcv markers test. Either way you are lucky

wish that 2nd test comes negative this friday!

now i see you said first 2 test took only 7 days to get results, thats definetly not PCR RNA VL test (usually takes min 10days). I think they did hcv markers/antibodies and that kind of test is really sensitive and prone to errors (ELISA). So one test u might be postive for antibodies, other u can be negative. PCR RNA (viral load) test is much more realible.

all the best

Andreaz · Newbie

im tested bi-annually. January was the first test for 2013. again, i was shocked to learn that i contracted Hep C.

apparently when one is found to be pos for any type of trans disease its automatically retested to confirm the pos. and mine tested pos the 2 times it was tested in january. I did not get the numbers re: viral load or the genotype. my second test i took a couple of weeks thereafter, was suppose to confirm the type of genotype and the viral load. fortunately, it came back neg. i am confident my next test will come back neg. but, i wont know that until i get re-tested. thank you guys. i have read a lot about your body's ability to clear the virus in a couple of months or years depending on the genotype and the viral load but for it to come back neg in only 2 weeks was shocking! im quite happy with the results, again, im just going to put all doubts to rest with my second test this coming friday :D

cinnamon girl. anything is possible, we know very little about natural remedies. but i do understand the skepticism. but we shall see this friday. my dr stated that the test they are going to do this friday is a little more elaborate than the first 2 so it will take anywhere from 10 to 14 days to get the results. the first 2 only took 7 days to get results.

Zlikster · Guru

@Andreaz, do tell more...when was the last time u have checked your blood for hcv (hcv markers/antibodies)? every 6 months? In January this year you did hcv test, tested positive for antibodies and then did RNA PCR test with positive result? what was the viral load number? sounds like either false positive or you cleaered hcv in acute phase (6 months)

all the best

Andreaz · Newbie

hello all.

A couple of weeks ago i went in for my routine bi-annual checkup. testing for hiv, all hep's, and other transmittable diseases... which i hate, absolutely hate doing, but having been diagnosed with cancer 10+ years ago. i found its important to find out whats going on with my body.

on the afternoon of 1/31/13 i got a call from the RN at my dr's office who, insisted on speaking with me. so i had to leave my office and i spoke with her. she was horrible! she said i tested positive for HEP C. she gave me the worst case scenerios and treatments available and what i should do. my confidence level went from high to low in a matter of minutes i was upset and sadden at the same time. So i IMMEDIATELY started researching Hep C and what i can do... soon after my Doctor called and told me that I do have Hep C and that my viral load was relatively low... and i shouldnt worry too much about it since its a low count but he wanted me to retest to make sure as well as find out the genotype of the Hep C. I was anxious for quite some time. I started taking different vitamins. B-Complex, B12, garlic, turmeric, folic acid, vitamin d, beta carotene, acetyl l-carnitne with apha lipoic acid and garlic. I did that for 2 weeks, giving myself the weekend to take a break. so 14 days of a combination of vitamins with 4 days off those vitamins. i finally got enough courage to go back to my dr to get retested.

as of last week 3/15/13 my test came back negative. my dr was confused, he stated that i went from testing pos for hep c to testing neg. he suggested i get retested just to make sure the first pos was a false pos. so this friday i will be going back to retest.

Cinnamon Girl · Guru

Hi Andreaz, welcome. I agree with what Zlikster said, it looks like it could have been a false positive or a case of spontaneous clearance of the virus by your immune system, which does happen in some cases. The vitamins and other supplements you`ve been taking certainly don`t have the capability to cure HCV, if that`s what you`re wondering. smile

Best of luck with your retest, Jill

news · Guru

Yeah, Robbie, we are not picking on you. It is just that we have all taken this so seriously for so long that it becomes a science unto itself, and we strive to spread what we have learned, and lessen the next guy's pain. I actually wish my doctor would have given me a four week head start with just peg/riba, just to get used to the process. I would have still required Incivek, but it would have been an interesting try. But it is a very new twist to an established protocol based on carefully done trials. So, don't let us chase you off. On the contrary, please consider our meddling for what it really is... a desire to make sure everybody gets good care.

Alan

mallani · Guru

Hi Robbie,

Sorry for my inquisitive post. You are quite correct, trust your doctor. Good luck with treatment.

JIme · Guru

If someone on here thought something I was doing was questionable or out of the ordinary I would welcome that thought so I could ask my Dr. and do as much research as possible about it. To keep it in is wrong and not fair to the person going though tx who might be reading this forum.

These are not opinions, these are the facts of our tx protocols. The protocols of hundreds of us who have gone through tx.

Above all I would want the truth. This would give me the best chance of clearing this virus.

Good luck!

Tankrat · Newbie

Malcolm, I recently joined this forum after reading through a lot of internet sites on Hep C. Most said join a support group to help you go through the process. I felt good about joining and up to now was glad to hear responces from my posts. I truly believe your resent posts to me were questions/opinions that you have kept to yourself. I have a very good doctor looking after me and I trust in what she believes is the best treatment plan for me but because of your posts, you have cast doubt in my mind if we did take the right route and if not what does this mean. These thoughts are not at all the thoughts that I should be having this early in the game. Thank you for that! Going forward, I don't believe this forum is a place for me. I need to remain positive throughout this whole treament and recieving posts that place doubt of any kind in my mind is not a good thing.

Cinnamon Girl · Guru

Hi Robbie, you`re welcome here, no need to look for somewhere else. Belonging to a good support group is so valuable while you`re going through treatment and you`ll have all the support you need right here.

Malcolm is just concerned, like a lot of us are, that you`re getting the best advice and care. We`ve seen many people pass through here doing one of other of the triple therapies, and so naturally when we come across an unusual treament protocol we are curious about it. We all have your best interests at heart here.

Do keep in touch, and stay optimistic, you`re doing well so far. smile ~ Jill

mallani · Guru

Hi Robbie,

Sorry to go on, but are you Genotype 1? We've just assumed you are as you're on triple Rx. Also have you had a liver biopsy and/or fibroscan to assess your liver damage?

I'm still having trouble with the explanation of the leadin. Yes, some patients can be Undetectable after 4 weeks with just Peg and Riba . This is mostly true for Genotypes 2 and 3. Only 30-40% of Geno 1's achieve this, and they will have the CC allele on Interleukin 28B and minimal liver damage. They then require another 44 weeks of double therapy. As such patients get better results with only 24 weeks of triple therapy, I can't imagine why a responsive Geno 1 would chose 48 weeks. The side effects for Incivek during the first 12 weeks are usually worse than Victrelis (rash, ano-rectal problems). I would ask my doc why I'm not on Victrelis, but that's just my opinion. Good luck anyway- may your Sx be few.

mallani · Guru

Hi Tankrat,

I will be very interested in how your doctor manages your VL tests. How is she going to determine your treatment duration?

The Phase 3 Trials came up with a strict protocol for Incivek. All 3 drugs were to be started together, and a 4 and 12 week Viral Load was obtained. If the VL was >1,000 at week 4 and 12, all drugs were stopped (treatment failure). If Undetected at week 4, patients were eligible for 24 weeks treatment (except cirrhotics). If detectable at 4 weeks but VL <1,000 patients would do 48 weeks treatment.

How is your doctor going to manage this, now that you are on this unusual protocol? Does she have any previous experience using Incivek?

Tankrat · Newbie

Hi again all, the lead in wasn't so much as a "lead in" to incivek. My doctor wanted me to try going with just Interferon and Ribavarin (probably spelled both wrong) first to see if we could wipe the viro load. She said there had been prior cases where just the two drugs worked and if there is a chance to stay away from Incivek that would be a bonus as that drug can have nasty side effects. The good news was that I was almost able to achieve that as my viro load did drop significantly so it was worth a shot. I've started Incivek this morning. I guess we'll see in a few days or weeks just how much side effects I will get from this drug. I hoping they will be minimal. So far the side effects from the other two drugs have been tolorable with moderate fatigue spells and some mild flu like symptoms. I don't think I'm going to like the 20grams of fat intake with incivek dose much though. I am sure I can beat this monster as I have a very positive attitude and great family support which is very big help. To all of you in this fight; Stay positive, keep telling yourself "you can do this", count your blessings and give thanks on a daily basis! This diease CAN be beat!

Cinnamon Girl · Guru

Thanks Robbie, well I can see the logic in that, although it`s an unusual approach. Great news that you`ve had such a huge vl drop, that must be very encouraging for you.

The fat intake isn`t easy, but if you type `20g fat` into the search box at the top of the page it will take you to previous threads where it`s been discussed before, and you`ll find loads of useful ideas.

Hope it goes well for you, Jill

Cinnamon Girl · Guru

Hi and welcome to you, Tankrat, and also Brenda. I must say it`s very surprising to hear that you`re both doing a 4 week lead in before starting incivek, this certainly isn`t the standard regime.

Best of luck anyway! ~ Jill

BrendaS · Newbie

I am new to the forum and starting treatment tomorrow. I also have a four week lead in with double therapy then Incivek week 5 to end. Its definitely Incivek as I have seen the paperwork going from specialist to insurance provider.

mallani · Guru

Hi Tankrat,

As others have said, it's very unusual to have a leadin if you're going to be on Incivek. Are you sure you're not on Victrelis?

Good luck.

Matt Chris · Guru

Tankrat

Keep your eyes on the prize, it's can carry you through the rough times.

Also many forum members can help with many insights on the journey.

Matt

Biggyb · Guru

Sounds like you will be on Victrelis, not incevik. Good luck, both drugs are good.

news · Guru

Hmmm, I hope you get good care. My VL was about the same as yours, but I started Pegasys, Ribavirin and Incivek on the very same morning. No lead in. Now, I am not an MD, but I look forward to hearing more about your treatment, considering it does not align with anything i have ever seen. The 4-week lead in is unique to Victrelis, but is not used for Incivek. Get well and stay that way.

Alan

Tankrat · Newbie

Hello all, my past has come back to haunt me and now it have to fix it. I started the regular two drug therapy 4 weeks ago and just got blood work back. I went from 9,000,000 virus load to 100,000 (close to undetectable but not enough) so now i will have to add incivek. Will start that tomorrow. A little bit worried about the side effects though. Not looking forward to it.

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~Bob~

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