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12 Week Viral Load 950

Since at 12 weeks I am still detectable, what are my chances of SVR?
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233616 tn?1312787196
Your liver and kidneys are both involved in your cholesterol levels, apart from genetics which also play a part. A lot of folks don't know the role kidneys function plays. Thyroid function also effects it. If you are even slightly hyper thyroid it can make you CH go too high, whereas hypo/slow thyroid patients tend to be low.

If you limit your protein serving to 3 oz at a time, and yes add oatmeal you should be able to improve that. I shaved 40 pts off mine with those 2 changes, mines down to 111 now, total. Of course I eliminated all hydrogenated and polysaturates 40 years ago.
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Avatar universal
Very Interesting!  No chance of my lipids getting too low. Even when I used to run 25 - 30 miles week. My total cholesterol has never been below 234.  I do have genetic high cholesterol. Is it the reason my virons are so persistant????  Although my LDL is high; my HDL is high also. My ratio is good as far as protection from heart disease but is it protecting my little nano size virons????  Maybe instead of eggs for breakfast, I will increase oatmeal intake. What's it gonna hurt?? I am getting kinda sick of eggs anyway. :) I only started eating them to get the fat for riba anyway.
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233616 tn?1312787196
You won't get everyone in here to agree with my low lipid theory. In fact most may disagreed.  Certainly you can't eliminate fat entirely, that would be dangerous,
also you need cholesterol, it is essential to health and if you go too low, your liver will just make it's own from other things like sugar...it's that essential.  Ergo you will always have some fat in you, and not all fats a equally bad, some are good.

My connundrum arrived because of studying the writing of HR in here. (Hepatitis Researcher is a HCV research doctor, he advocates using the lipid PPC for fighting liver fibrosis, however he also points out that all the research points to the virons being impenetrable by the current drugs due to their hard, multilayered lipid shells.
Also recent studies suggests drugs in the statin drug class have resulted in greater rates of SVR.  Ergo, while I don't advocate statin use for liver patients as it can be a dangerous drug for them (warnings galore) still, reducings ones overall lipid profile by diet alone may just do the same thing, and lowering your blood lipid levels may be the extra boost towards SVR that many need.

It helps if you start thinking of foods as part of your drug regime. All drugs and foods get reduced to little white powders so to speak. Proteins, needful but high levels tax the liver so limit them, sugars, natural fruits best, too much is turned into fat so limit them, fats and lipids, essential as well, but you read my logic so limit them.

If you get your lipids too low, you may become a candidate for serious depression and suicidal ideation, I know I did. This is because cholesterol protects the brain, and without enough one feels raw...like someone has taken a cheese grater to your mind and emotions.....my solution: modest doses of 2 liver friendly drugs, Ativan daytime and remeron at night, and if I still have the blues bad for more than a day...I'll now go hurl down a couple of eggs. This restores my level up to where I'm not crying whenever a tv show, or freaking commercial is over....which I was doing.
So balance, it's all a big balancing act and all of us are just figuring it out as we go.

mb
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Avatar universal
Thank you for those encouraging words. Right now, I just hope I get UND so I can join the 72 club! I really can't focus on anything but my appt in 2 weeks so I can get tested again. I see their point too which makes this decision so hard! Every day since I posted my decision, I have questioned it. I am still in that fearful/hopeful stage of getting UND. Right now I just keep hoping that the next lab will show UND. If I don't by 16 weeks, it will be harder to live with that decision. At first, I ate fiber with my riba. My doctor had told me not worry about what I ate. It was summer then and I had high fiber cereal for breakfast. But I am curious about eliminating fat & lipids. I had increased mine - sometimes having eggs for breakfast and sometimes a teaspoon of organic virgin coconut oil when I just couldn't stand the egg, Also, I eat yogurt, should it be fat-free, low-fat or full fat. I eat reduced fat ice cream just because I like the Edy's slow churned vanilla. Any info would be helpful. I have so much to learn!
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233616 tn?1312787196
well you certainly will be able to say you decided with an educated and informed consent.  After seeing the Vertex in 06 post it does give one pause.

On the one hand, I see jm and mikesimons point very well...on the other hand, if you are like me, or like NYgirl, you would really be causing crazy making....

something impeccably logical like waiting, or quitting, can make no sense on an emotional or spiritual level.  It is after all, only our lives we are talking about.
(I was advised by doctor and some member's to quit in here) (my VL went up not down one month).  I opted to believe this might be due to the ongoing infections and leaking gall bladder causing a immune system hail storm. Had the GB removed, stopped eating fiber with riba, eliminated all fat and lipids, and went UND soon after.
Of course the studies showing that late responder could still SVR were just coming out.

Still it was a hard decision given my doc only gave me a 3% chance even with ex. tx.
I took it...
and since then more studies have shown that late reponders have almost the same chance as early and super early responders, given extended tx.

Make the choice based on what you'll be able to most live with. You have to look at yourself in the mirror at days end, and be assured that your fight is worth it.
For me it was an easier choice since I was already experiencing stage 4 symptoms...
But even if you are not....there's something about knowing that little devils are chewing up your insides that just doen't sit well with most...

anyway, welcome to the 72 club (sounds like), and either way, we'll be here for ya.

mb

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Avatar universal
Thanks, my guns are a'blazing! Just popped my riba!  
Will you be able to reverse damage? I have read some that have stage 3 have reversed.
I know what you mean about being ready and all things coming together at the right time to treat. I had a physical when we lived in New England in 2003 that showed elevated enzymes but I worked at a real "partying" company then and was drinking more than I should. Common practice there was meeting in the foyer many afternoons and having drinks while "meeting". I blew off the abnormal labs as being caused by drinking and did not retest. We moved and I forgot all about it until it showed up again. But one thing I know for sure is that I was alot more prepared to handle the situation now than I was 5 years ago (even 2 years ago would have been difficult).   Everything in my life was more in line to handle the diagnosis and treat this time.
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179856 tn?1333547362
I like being proactive. It would be hard to wait"

Unfortunately for you you are a lot like me. I just couldn't stand the thought of doing nothing and had decided to go for it even if I was stage nothing (unfortunately I was already a 3).

You do have time either way but one good feature of doing it now (not that I"m saying to - your decisioneither way) is with such minimal damage you just might be able to totally reverse it all the way down.    It must be good just knowing you have a shot at it.

I wish I had found out years ago so I could have been in those shoes but unfortunately my lifestyle was just not ready for it anyway.  It's a perfect combination of things that enable us to do treatment (well not perfect but tolerable I guess) good support group and family, insurance, job protection, etc. etc. and it sounds like you have them all in line.

Good for you.  Either way stop watch and wait or go full guns blazing we are behind you 110%.

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Avatar universal
Mike, sounds reasonable to me. Man we have been guessing on here for a long time now. I just saw this old post on here the other day.

, Nov 29, 2006 12:00AM
To: music
sorry for your dilema but am real encouraged by your dr's feel that vx950 will be available next year. i have been given similar time frames. i am also stage 3 ,just finished tx and waiting 6 mo results. the news is encouraging on vx.

bobby

Hope all is well with you mike.

skersj, both drugs just started recuriting a phase 3 trial for us relapsers and nonresponders. Both of the trials arms are for 48 weeks and should all be started shortly after the first of the year. Then there will be the 6 month follow up.
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Avatar universal
Have the trials studied SVR rate on relapsers or non responders and if so do you know what they are? Another reason I don't want to wait is that I also don't know for sure if I will tolerate the new drugs and I don't want to wait just to find out I am back at square 1.
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Avatar universal
I have followed Telaprevir for a number of years and on the basis of the drug trials' results I think sometime in 2011 is a reasonable estimate. Of course, no one knows for certain but that would be my best guess.
Mike
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Avatar universal
Ha!Ha! SX ARE a SOB!! But I meant shortness of breath!  I also don't want to leave the impression that I don't have other sx. My hair is thinning, my whole body is as dry as a desert, my face has aged, etc. It is just that those kind of things are not really bothering me because they are not life threatening.  And thanks to the people here, I have learned about virgin coconut oil for dryness, Biotene mouth products, etc.
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Avatar universal
skersj....The worst sx are SOB
-------------------
Do i ever agree with that they are a sob... Oh maybe thats not what you meant. :-)

My hepo thinks with the new trials just starting, then the follow up, then the red tape dealing with the FDA were looking at 3 years at least before their on the open market... Good luck

cando
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Avatar universal
Thank you all for the helpful suggestions. Believe me, I have considered each one and am very thankful. My husband and I had a long talk about it and this is what we decided would be good for us. It is sooo tempting just to stop and wait but I decided to go at least until week 24 for the following reasons:

1. I am tolerating the meds extremely well. The worst sx are SOB, fatigue & muscle spasms and then only during heavy activity.

2. I have no family hx of diabetes, RA or other auto immune diseases. I do have family history of high blood pressure & heart disease but I had a heart cath before treatment and my heart is in great shape. Family history isn't everything and no one knows what health issues could arise but I feel I have as good a chance as anyone to come out of this healthier than before.

3. I have already taken 14 shots - only 10 to go to see if I clear by 24 weeks.

4. I like being proactive. It would be hard to wait. If I get sick or sx get worse at least I know there is hope for the future. And if going 72 weeks keeps me from relapsing, I will be approx 6 months post treatment when the new meds are approved. If I fail to SVR and I am still healthy, I might be able to go right into the new drugs with a low VL. Does any one know if that would matter?

Everyone seems so confident in these new drugs and that they will be available by 2011. What do you guys know that I don't. I feel hopeful,  just don't feel confident.
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Avatar universal
What do you most recent biopsy results reveal?
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388154 tn?1306361691
I think theres hope for us relapsers with the new drugs, not sure when they will be available though, lots of rumors and  speculations going on about that.
I´ve learned not to put to much trust in rumors,  especially when the stockmarket is involved.

I think even regulat tx is aproving a lot and to help your self you can keep your self updated with the newest strategies such as monitor the tx more individually.

If you IR ( insulin resitant) fix that before treating eventually add something out of the box such as pretreating with riba  and  or if you can take it double dose peg in the first weeks to get to RVR.
Alina sounds promising to add maybe boosting your immune system in the end and pre tx theres a lot of things to consider!!!
I think to maximize a positv outcome which is as we all know by now negativ, No virus detectable on a sustained base.

The more educated and prepared the more our odds will go up I`m sure.

I´m soon ending my second tx and i say this to my self as much as to you let us never give up hope wish you the very best next time.

ca

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Avatar universal
I have been reading all of your comments trying to get some hopes in my own situation. Geno type 1a done treatment twice to no avail.. now just waiting for anything new. I have heard og the GI5005 & the vx950?? what phase are they in? anyone know?   Thanks  Taz
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Avatar universal
Yes, you are correct Jim. Her viral decline slope make me pause - even though she did have a 2 log drop by week 12.  A VL of 950 at week 12 with minimal liver damage and at a time when Telaprevir may actually be on the horizon compels a close analysis of the risk/reward ratio and a serious consideration of waiting and watching. If I was in her position I would probably lean towards waiting. Of course, I'm not in her position so I really don't know for sure what I'd do. I would think about it and discuss it with my physician - I do know that for sure.
Mike
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Avatar universal
Mike: I am not one who usually advises waiting and watching - ask Jim, he'll tell you -  but in your case I believe a strong argument can be made.
----------------------
Yes, that is correct :)

My guess -- and Mike will correct me if wrong -- is that Mike would have taken more of a neutral stance (compared to me) pre-treatment on "treat now versus wait" for a geno 1 with stage 1 or even stage 2 liver damage.

And again, not to put words in Mike's mouth, his logic here is probably that you did give it the try but results from the 12-week marker are telling you to pause a bit and reassess the situation because it's no longer the same decision you made before you started treatment. The duration will be longer, the odds will be less.

So, the reassessment process at week 12 for slow responders isn't just whether to extend or not, but whether to continue treatment or not. The latter gets left out of discussions here all too often and I'm happy Mike (a more neutral kind of guy :) ) agrees that in cases like yours and chimed in.

I don't think either of us are telling you to stop treatment, but just to take pause and reassess how you will proceed based on the new information.

-- Jim
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Avatar universal
I do not want to sound negative about your treatment but, in your, case I think I might lean more towards Jim's suggestion to wait for the PIs to be available. From what I have read Telaprevir should be available by sometime in 2011. I believe it has been very well established that the efficacy of treatment with Telaprevir in the mix is much improved and the duration in some cases can be significantly reduced.
72 weeks is doable - I did 73 weeks myself so it can't be all that hard. But seriously it is a long and very hard road.
If you're someone who cannot bear to live knowing that an active virus is inside you then maybe embarking on a 72 week journey is worth it. If, however, you can deal with that and wait and monitor your labs and your liver then I think that might be a very reasonable approach. This all assumes that your liver is stage 1 or even stage 2.
I am not one who usually advises waiting and watching - ask Jim, he'll tell you -  but in your case I believe a strong argument can be made. I would certainly give it serious consideration.
I wish you good luck regardless of which way you go.
Mike
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179856 tn?1333547362
I'm a little late to the party but wanted to give you some encouragement.

I was at 411 at week 12.  Way back when I was trying to figure out if it was worth doing the 72 it wasn't really very common so I went to Dr. Ira Jacobson, the doc who was the lead investigator of many of the studies we commonly use (Berg for example).  He was the one who informed me (us here) of the Sanchez Tapias study as well.  I asked him flat out what to do (my own GI wasn't sure at all).  Dr. J said if I wanted to know at the end of the day I had done everything I could to improve my odds and get them to be the best that I could that he would advise the 72 weeks.

That was all I needed to hear.  I've been SVR for over two years now.

Just put each week behind you and try not to focus on the number of weeks you are treating rather once you get to UND realize how great it is to count the weeks of how long you have been UND.  Not saying that 72 isn't a long road but really - the time does go by quickly.  It is a TEMPORARY thing that can give you permanent results.

Just wanted you to know, it can and does work.

As for exercising so much on treatment that your neuts would drop - no not me. I was a complete and total couch potato except for work. Just started exercising again this week as a matter of fact not that I couldn't but cause I didn't want to because I got used to being lazy.  Best to keep at it if possible on some level during treatment because getting out of it.......wow boy oh boy do I feel sore today!

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388154 tn?1306361691
Correction the guy I know how run marathon during tx he was on pegulated interferon and riba,geno 1 doing 48 w of treatment.

He did only run one half mara during tx 21km, but he runned 80km a week training.

The funny thing this guy was a skilled atlet in his young days handboll player then he developed severe alcoholism, even have had dilerium tremens three times.

The hospital phoned him once 12 years before he treated told him hes values had skyrocketed (alat) and they wanted him to treat asap, as he him self told me he was in a positiv period ( felt good about being drunk) although heavy consumtion, so he just continued heavy drinking for another 10 years.

This guy has been sober I think 4- 5 years now cleared the virus three years ago and is know top 10 in Sweden hes age categori running half marathons and also a 30km run every year (  the Lidingö run). ( he has to my knowledge never runned a full mara ).

Amazing story but back to my self, I must say I´m more of the kind that think you should listen to your body not exercise to much.

As you probably know it is not the virus in it self that damage the liver but the immun defense when defending the body against the virus.
I think I have a weak immun defense and also little damage although 3.8 milj baseline vl and being infected 35 years.
It can also be a genetic thing, some people just dont get their liver damaged as easy as others.

ca
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484932 tn?1226513291
Hey,
had a similar sit with a match and you  need to know when to quit. I was playing a neighbor and it started to go long, I pushed past the weak point and kept playing and by the time it was all over I had horrible muscle cramps for days. prob dehydration. I go out and serve and sometimes play against the ball machine but , for me, playing has become a thing of the past. I have 7 weeks to go and my birthday is in march. I cant wait to get back on the court and build myself back up. Push on soldier , but be careful.Light exercise is recommended
good luck , wish you  und forever!!!!
pj.
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233616 tn?1312787196
what I want to know...is who's gonna help me climb those stairs???
better have a gurney at the top.

I guess jmjm makes an important point...

as I was reading the latest 1b study where a 9 superlateresponders SVR'd with extended tx I had to also look back over the last 56 weeks.
I cried when the end of this week came, because another month that felt like a year had come and gone.

I will be treating out to 72 wks and perhaps beyond that, to give my stage 4 liver the best and probably only chance it will get to SVR.

but if I was in early stage, knowing what I know now, it would be well worth weighing the wait for the PI's and such, as right now 24 wks sounds like heaven.

someone also posted yesterday a new vaccine from sweden that works on infected people....one shot vs. all this ?????   One has to wonder if a wait might not pay for itself.
Even though I'm glad I'm treating, the whole year has been stolen.....I've zero stamina and am barely myself somedays I don't even recognize the person I've become...and though I know it's the meds, it no fun having all the joy sucked out of you by these nasty and unforgiving poisons.
I yearn for the day when medicines will hone in on only the cells or virons that need killing...but until then, this is literally waking up sick to poison myself more, each and every morning.

Most of the time I'm very pro-treatment, no matter what, but then I think of Foreseegood, and Scratchyhead and others who are waiting...and I think thank God they haven't had to go through this.  And maybe they'll have to anyway, but manybe they won't. One thing for certain, I would not wish this treatment on anyone, not even my worst enemy.
(although I do confess to wishing hubby could just have a week of it so he would not be so puzzled by my condition).....but that's not really wishing it on him..if you follow.....only wishing there was understanding.

It's a personal decision, and hard to quit when you could still SVR given extended tx.
Especially if you don't know how long your job/insurance will be there....but if I was stage 1 or 2 it would be very tempting to wait for the better drugs. The toll extended tx takes afterwards and during tx can be enormous, plus, in most studies very few who tried for extended tx were able to make it. Most had to drop out early due to increasing sides....so even the choice to extend out can be taken away if the sides become too unbearable, or the doctor deems them dangerous.

mb
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Avatar universal
The advice to run up stairs to increase your white count is because exercise causes the white cells that are adherent to the blood vessel walls to release and enter the bloodstream. It's called "demargination."
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