Viral-Breakthrough

[shawna1968]

Has anyone ever had this happen while on tx?  I started tx 9 months ago, vl was steady decline.  I started at 636,000 (type 1a).  At month 7 it was 2.  It 8th month went back up to 245.  Now dr says I havve to do another year!!!!! any advice?

[Kalio1]

Sorry to hear about the viral breakthrough. Yes, I have heard that can happen, unfortunately. How frustrating for you!

In addition to doing the additional treatment time your doctor recommends, have you discussed changing interferons or dosages for that extended period of time? I would speak to the doc about "changing up" your meds. It might help, who knows.
If I was in your shoes, I would really think about adding Oxymatrine to your treatment, you might want to research it. I am taking it because it will not interfere with my treatment and showed very positive results in it's ability to kill the virus so I added it to the Interferon/Riba. Hopefully it will give me one more tool to help me hoefully kill this virus.

I know how you feel about the idea of having to do "more time" on these meds, I have been treating for what seems like forever and have 6 more months to go. There are quite a few of us doing extended treatment here on the board so at least you aren't alone!

remember, you might have lost this battle but you didn't lose the war if you know what I mean! Stay positive.

[jmjm530]

I posted to you on the other side.

[sfbaygirl]

Sorry to hear about your breakthrough, they are kind of rare. If I were you I would get another PCR to make sure it isn't a false positive. We have had that happen here too.

[GoofyDad]

That is a very slow decline you posted. I would venture that even without the breakthrough your odds of remaining clear after stopping the meds would be somewhat slim.

I think something has to change for you to stand a reasonable chance at clearing the virus. On the other hand, depending on the degree of liver damage you're facing, you might want to consider taking a break for a while and attacking this thing down the road - there are some very promising new treatnment drugs in the pipeline.

My guess is that you may be in the care of a doc who doesn't have a whole lot of experience in this treatment. I would highly recommend you set-up a consultation with a top-notch hepatologist to help plot your course going forward. Good luck to you!

[sallyo]

what is oxymatrine? Is it herbal or require a script.  How did you find out about it?

[Kalio1]

Im not sure where I heard about it! I decided to take it after researching it and most importantly getting HR's valuable input on it. It is one of very few tools available to us to enhance the "cocktail" of tx. That is why I added it, to add yet another antiviral to the mix. It does not require a scrip either. I would have added Alinia too if I could get my hands on it!

Taking Oxymatrine while on treatment is fine, it won't interfere with or compromise the effects of treatment and if it helps to kill off any of those HCV bugs, all the better. It is said that it can increase platelets. Mine have gone up since I started it, though not by much. I don't know if it is due to taking Oxymatrine or not.
It is not recommended to take it unless you are on treatment with interferon because you don't want the virus to mutate around it and without taking Interferon, chances are it would and then it would be useless at killing the virus but since you are on tx and have had trouble clearing the virus, might be worth a try. Since I was a relapser, I wanted to add to the med mix if there was a chance it could improve my chance of SVR. I purchase mine from AlchemistsLabs online and it is not costly. I also take a number of other immune system enhancing supplements that I believe help me to fight this virus that I get from Life Extension.
I have had more energy since I added it. All the best to you, hope this tx does the trick for you.

here is a bit about it

http://www.itmonline.org/arts/oxymatrine.htm

[Myown]

I don't think people are posting on both sides.(some maybe) It seems that MH may be moving them over so that people start to realize 'what' should be posted 'where'.

Earlier I answered someone on the other side and then came immediately over onto this side and the same thread was already here with my added post.

[jmjm530]

I'll briefly repeat some of my thoughts on adding Oxymatrine from the other side -- or any drug/herb for that matter -- to SOC.

Unless a drug or herb has been either adequately trialed or less preferably a doctor well-versed in the field has patient-based data to support it's use, I would be cautious. I have seen no significant trials posted nor have I seen HR state that he has evidence that Oxymatrine has benefited anyone in terms of SVR. He has talked about some very small overseas studies and how it works in theory, but that is quite different.

Where I come out, is that if your treatment is going well, don't rock the boat by adding anything, especially something that may work along similar pathways to the drugs you are taking. I ran into a similar problem when my derm suggested Enbrel for my psoriasis. Enbrel is a systemic immnosuppresive that actually at one point showed some promise in killing the HCV virus. My hepatologist's opinion was that since treatment was working so well for me, why take the chance by adding another immunosuppresive the mix. So I didn't take Enbrel.

That said, if my treatment had not been going well -- say I hadn't cleared by week X and therefore, while hopeful for SVR, was more on the interferon ride for better liver histology, I might be seeing out something to add to the mix, after thoroughly researching it out. That something may or may not be Oxymatrine as I have not researched that particular drug/herb out.

According to what I believe HR said, in order to research out Oxymatrine, you would have to dispense with the usual suspect internet sources and go to a medical library and dig up the original overseas studies. Then, these studies should be brought to your doctor for evaulation. This seems to me a very reasonable approach as opposed to simply start taking Oxymatrine because you read here that it's good for you on treatment.

Again, if you're doing well on treatment, think twice before rocking the boat. If you're not doing well on treatment, don't grasp at straws unless those straws have some real substance to them based on evaluation by both you and your treatment doctor or a consultant familiar with your medical history.

-- Jim

[jmjm530]

Apparently you posted the same post on the other side. HCA says you have posted this before as well, but don't seem to be replying to any of the questions people are asking you. You only mention two tests -- one at 7 and one at 8 months. What were the results of your previous tests, for example at weeks 4, 12, 24, etc, and what was the sensitivity of those tests? How much liver damage do you have? Difficult to give you advice you asked for without more information.

-- Jim

[jmjm530]

However it got there, Swhana's identical post was on both sides. Hopefully, she will see both of them and reply to at least one :) Maybe MH duplicated it although seems more likely they would move a question, not duplicate it. I've seen this before and what I think happens is that folks are confused so they post in both places. Or maybe they post in one place, then end up on the other forum -- don't see their post -- and post again. We know there are two forums with very similar names and identical looks but I'm sure it's VERY confusing for someone just arriving here. Also, this type of question legitimately seems to fit either forum description, as it's both support and a question regarding terminology. Maybe it's just a software bug but for those concerned, I'm sure MH would clarify if you email them. Isn't today the day for your week 4 results?

Best of luck.

-- Jim

[jmjm530]

Just so you should know, if you're doing Heptimax, the longer you have to wait for results the better. That's because they run the less sensitive PCR first and only run the more sensitive TMA part if you're non-detectible on the PCR. The shortest time I've received a non-detectible via Heptimax is 5 days, however the majority of the time it took close to two weeks. So again, if you don't get the results to day, probably good news.

-- Jim

[Myown]

Yes, I just spoke to NP and she said just that,that they are doing TMA and so it takes extra days. She said not to worry she believes it will be UND. But of course I told her when i see it in black and white I will feel better. But I think it looks good, i hope. It took such a drastic plunge initially so hope that helps with final outcome. fingers crossed.

[jmjm530]

What that means is that you are definitely under 50 IU/ml which is what the PCR portion determines. That has already been completed if I read your NP correctly. Given that, it's highly unlikely that your TMA will be positive, but, yes, black and white is always best. You'll probably have the TMA back sometime next week.
I forgot but what were you previous viral load numbers?

-- Jim

[jmjm530]

Also, if in the unlikely event you are somewhere between 5 and 50 IU/ml, still nothing to be concerned about because you will likely be non-detectible by week five -- I assume they are doing weekly viral loads until you are non-detectible?
So, looking good, whatever the TMA brings.

-- Jim

[Myown]

No ya see, she told me that I would be UND with the drawing I had at office (last one). I told her that just incase I wasn't, don't you think you should give me a req form to get another which will be for results of 5th shot. She said no need to. I said I didn't feel comfortable with that, but then I started to show no confidence in her and also didn't want that. She's good NP and very nice and seems very knowledgeable. Dr.D's NP

Now that I hadn't heard anything and did get a hold of her, I explained that what if this isn't UND, I do shot 6 tonight. Shouldn't you fax me a req so I can run over and see if I am clear from shot 5, just incase? Otherwise if I wait until after shot 6 (tonight), i will never know what week I cleared. She thinks I'm worrying too much and she really considered me UNd from week 2 and possible contamination showed the 96. it went from 8.2 million at base to 4oo something to 96 and now waiting on 4th week results. Didn't have pcr week 1, just 2,3, and now 4. So thats the story. I should know today or maybe early next week I guess.
Fun, fun fun, but you all know that all too well too.

[Myown]

that should have been considers UND from week 3.

[jmjm530]

Here's the skinny. She's probably right but you should have insisted on the week 5 test for reasons stated. But that's water under the damn, so let's move on. If for some reason -- and I highly doubt this -- you are still detectible on your week 4 test, then you must INSIST on a week 6 Heptimax to be taken the day before your seventh shot, but I don't suppose I really needed to tell you that.

Truthfully, in the hypothetical where you are detectible at week 4 and undetectible at either week 5 or 6 based on a week 6 Heptimax, it really doesn't matter whether you became non-detectible at week 5 or 6.

Bottom line is, like your NP, I think you've got it at week 4, and the next time you run into a situation that doesn't resolve to your liking, just take it a step up to the doc. I'm sure he'll go along with anything reasonable.

All the best,

-- Jim

[jmjm530]

Related, how often do you get to see the doctor as opposed to the NP? Also, is she a NP or a PA, there's a difference, I think.

-- Jim

[Myown]

I spoke to him a couple times with NP.Np seems to have her own book,so to speak.She seems to have alot of power there. He seems to appreciate her and rank her high. IF I didn't like her so much I would just insist on seeing him only, but I am VERY happy with her so it doesn't matter who I have.

My husband thinks she's great. She takes her time with you,is very encouraging and down to earth, but so is the doctor very down to earth.They are both just very very nice people.
He is always there, and will pop in the room to ask how you are doing even if you were scheduled with NP.


My shot is starting to make me tired. I guess I will be hitting the sack soon. I'll read some posts and then watch tv until I crash.

Have a good night!

[jmjm530]

Gotcha. Still don't underestimate your input in the office. Asking for an xtra test, etc, is no biggie to them. When I run into similar situations, I always say something like " You're probably 100 per cent right, but I'd still feel better if I had the xtra test". Actually, I had a tall stack of lab requistion forms at home so really never had to ask, but if I did, that's how I'd approach it :)

Be well,

-- Jim

[jmjm530]

Regarding my requisition forms -- still not sure if my docs had supreme confidence in what I was doing, or if they were placating a very persistent PITA patient. LOL. I guess it doesn't matter cause got what I wanted :)

-- Jim

[Myown]

PITA lol yeah I guess you can say I probably have that title too. although the NP won't say that, she's nice about it and says 'sounds like your on pins and needles waiting for results. I said no "i'm freaking out waiting for results.'lol


I never bought into that saying 'no news is good news.' That saying works the opposite with some people such as myself. I'm somewhat a control freak, unfortunately, and have to know whats going on all around me, especially with something as important as this.

There are so many studies done concerning hep.But I wish they would do a study on how EVERY PERSON that comes into contact with the patient has a DIRECT EFFECT on this persons illness.

Doctors and nurses deal with illness all the time, but for most of us this is our first time and it can be very scary, to say the least. I think sometimes they forget this, not in a bad way, but they forget that there are millions of worries going through our minds about this and even something as little as waiting for lab results can cause anxiety. The disease messes with our mind, but sometimes our own lack of control of our thoughts are worse than what the disease can do to our mind.

I just read in the other forum bug asking you about the short course. That is something I would like to do to, but I am really afraid to take the chance. I don't know what would bother me more, long term sx or having the disease come back. But I lean towards having the disease come back to bothering me more. But its definitely something for me to talk to them about. Dr. A said he would be happy if I completed 16 weeks if sx were rough. I really have to think this out. I'll probably flag bug later and find out exactly what her doc said. Now thats a BIG decision to make 16 vesus 24.

see ya!

[jmjm530]

MO: I don't know what would bother me more, long term sx or having the disease come back. But I lean towards having the disease come back to bothering me more.
------------------------
I've never shared this logic, especially if someone has little or no liver damage. Has the virus crippled you physically in the past or is it just the *idea* of having a virus in your body that bothers you? We have plenty of viruses in our body, many harmless like herpes if checked by our immune system. So you'd rather have some potentially unknown side effects for life than a virus that might not do any harm or that certainly could be cured another day with another drug. We're all entitled to our opinions but you might want to read these threads before making a final decision:

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html


Be well,

-- Jim

[Myown]

It's the 'idea' or the knowing I guess. I have trouble knowing its there, better if I didn't know. You compared the male versus female thoughts of virus one time and I believe you were right. It bothers woman more than men to live with the virus.

Big decision, I have to mention this the next appointment.
thanks