Reasons For Nonresponse?

Someone commented about Southernboy and his response problems.  I've been in contact with him for a few years, and he is one of many people I know, like Travelmom's daughter, who keep progressing despite the amount and duration of interferon they take.

Nearly everyone gets some kind of first phase response - an immediate drop in viral load.  This is when interferon kills off the free-floating virus in your bloodstream.  Most of the time, the problem is in second phase, when the action of IFN changes completely, and starts working on the virus in your liver.  I have known people also who get no first phase response whatsoever.  I also know many partial, breakthrough, and relapse responders who continue to progress rapidly after treatment. My best guess is that this is caused by a combination of subspecies, viral/host genetics, or one of those so-called "Independent Predictive Factors Of Nonresponse."  I have a very good friend who is double-genotype, has treated 7 times, has gotten viral load down to <50 and cannot clear.  As soon as this person stops treatment, liver values go south.

I once had the good fortune of talking with Dr. Lawrence Blatt, the scientist who invented Infergen.  He told me that the genomic differences, say, between geno 1a and 1b are dissimilar enough to be classified as completely different viruses.  He added, "And that's not counting the whole quasispecies thing."

The way I see it (and I've been wrong many times before)is that HCV is a crazily mutagenic RNA virus, and now, with 63 characters left, I am out of space.

[MKAndrew]

So I'll continue here.  I do believe some of these independent factors may be true, but we must always keep in mind that the number one predictor of response has always been genotype.  

I think there is some validity to the idea of insulin resistance, although I don't think it's the resistance - resistance is a result.  Insulin itself is a powerful hormone, so my guess is that hyperinsulinemia may play a role, and it's entirely possible that many people have this problem and don't know it.  There is a difference between being diagnosably diabetic, and having too much insulin in your system.  In fact, hypoglycemia is undoubtedly a form of hyperinsulinemia that is at least transient.

Someone also asked me about iron.  While studies show that excess iron can interfere with the efficacy of IFN, other studies show that iron overload does not seem to figure into SVR - one of those odd contradictions.  However, there is no doubt that iron is a killer.  Even people without HCV who have iron overload are in danger of severe organ damage.  In non-HCV patients, this is ususally caused by hereditary hemochromatosis (HH).  However, there is a definite genetic marker for HH, and most HCV patients do not have this form of iron overload.  Most of us suffer from secondary hemochromatosis, a result of infection.  For some reason, a lot of us tend to conserve iron in our livers, and it appears to be a necessary ingredient for HCV related liver cancer.  It can cause extreme fatigue, too.  I can't tell you how much better I felt once I got my iron levels down.

Why some doctors take this lightly is beyond me.  My first hepatologist was like that.  I knew from my first dx of NANB that I had iron problems, but he claimed I did not.  I looked into my records from my experience with him, and my ferritin (the protein that causes you to conserve iron) was over 1,000, and my actual iron was very high as well.

My miracle doctor, Dr. Liverman, got on my iron problem right away.  I asked him about chelation.  He said that chelation was dangerous, and that the only FDA approved drug for chelation, Dysferal, was even more dangerous than the iron itself.  Chelation can also cause all of the chelated iron to drop into your kidneys, and then you may end up with kidney failure.  To the best of my knowledge, the only safe way to remove iron from your body is phlebotomy - good, old-fashioned bloodletting.  I am not advising anyone to do this.  Ask your doctor.  I would say however, that if you do ask your doctor and he's not taking your iron problem seriously, ask a different doctor.

I have done three rounds of phlebotomy.  As a result, my new biopsy showed no traces of iron in my liver whatsoever.

[pln]

Great!! I am 1a and 1b.. and stage 3. I am in the vx-950 study.

[MKAndrew]

Oh yeah.  As long as I'm taking up space, I'd like to say a warm and thankful hello to Rev, Southernboy, Roadie, and all the other "old timers" who have been relentless in their support of my maniacal treatment endeavors.  

I haven't posted here in a long time, and I will probably return to the outside world soon, so I wanted to take this opportunity to express my gratitude to the Medhelp gang.  For any newbies here, you should know that you've found some of the smartest and most informed people on the web here at medhelp.

[Myown]

I whole heartedly agree, that for the newbies, like myself, we have found the smartest and most informed people on the internet. You certainly can count yourself in as being one of those smart people, as seen by your comments.

I'm thrilled beyond words to have found this site. Really don't think I would be able to face what I am about to endeavour without all these guys and gals. We may poke and slap each other around once in a while, but I know that we are all here for one another and each and every person here wishes only the best for each other.

Just a tid bit...you may want to check out your vitamin store and look into Lipoic Acid. From what I have read in health magazines, it is a chelator. Didn't say there were any dangers in taking it,but shouldn't take it if  your body is low in B12. I've been taking it for a while. My doc just took a blood test for iron, so I will find out if the lipoic acid is doing what it is supposed to do at my next appointment.

Wish you the best! Thanks for your info.

[Tater-ToT]

Well Lookie what the cat drug in... but glad it did...
long time no see... great to see you.... but cha know... I could have gone all day without hearing this combo stuff..... being the 1a & 1b combo that I am & waiting for those round two results this thursday..... you just gave me something for my brain to harp on for a week... Thanks Alot....LoL

Ahhh, hopefully two was the magic bullet for me... but I do have to be honest... I have always been a little spooked by this combo thing... I know everyone including the doc say they treat all 1's as the same... but I have ALWAYS thought that the combo factor made it a bit more stuborn because it obviously already mutated to get to that point anyways... & being as we are the rare LUCKY Few... there just isn't that much statistical data available on us!

Really GOOD To See you... & I WISH You'd stop by more often... & If I have GOOD News Next week I'll hunt you down & do the Happy Snoopy Dance on Your Head... Ha!

Take Care My Friend...
Vicki
:)

[sundancer2007]

Oh it is all so complicated and individualistic. I suspect the only thing that is almost 99% true is if you are clear after a year post treatment you will probably stay clear. What that means for your long term health or how you function we don't know. I think we do not know as much as we think we do and the progression can speed up and slow down for no appearant rhyme or reason.

I am tired of HCV and want to keep living my life and enjoying my friends and family. I have let it rob me of too much already. I am off to the Grand Canyon and I don't plan on mentioning HCV one time I am going to just think to myself what a gift life is and I am so grateful for the love in my life.

May the love you take be equal to the love you give...."

[TravelGrl]

So glad to see your post and am thrilled about your biopsy news!!!  We always said if there is a miracle out there you will be the one to find it.. I am so happy for you my dear friend!

I too had a biopsy two weeks ago.  Thankfully I am still a stage 1 from 15 years ago... Bitter sweet I guess you can say.  For me to be at one end of the spectrum and Amanda to be at the other.  She has been having a rising AFP lately...and fast...from 50 to 100 to 250 to 400...we took her for an MRI and a CT scan..both which were thankfully negative for the "C" word.  We also took her to a transplant Doc at Columbia, but thankfully he felt she had some time..  so in the mean time we sit and wait to hopefully get into the next phase trial of VX-950 for non-responders..if they will allow cirrhotics.

I will be participating in the VX-950...In fact I am starting this Friday the 8th... i am hoping to clear the virus and so if Amanda needs a liver, she can have mine.

So happy for you my friend.

Stay Well,
Jodi

[fishdoc]

Yall are gonna love this.... Drs. nurse left a message on my machine telling me I was anemic and needed to take iron supplements... I told hubby NO I DON'T.... jeeezzzz its a scary world for hep c patient...

[Myown]

Wow, scary taint the word!Unreal!!

[jmjm530]

While iron overload is not good for the liver, you do need adequate iron stores to help thwart anemia, i.e. for the red blood cells reproduce -- especially if on Procrit (epo). Without enough iron stores, epo will not work, and in fact in the Sweedish high-riba studies, most of participants ended up on supplemental iron eventually.

The test for Iron stores are Ferritin and Transferrin Saturation (TSAT). They may have to be ordered separatly since they often aren't on the standard labs. If you're anemic and Ferritin is <100 or TSAT <20%, you may need supplemental iron. Something to discuss with your treatment doctor and/or a hemotologist who is familiar with HCV combo treatment.

MyOwn ... I did notice you posted about B12 and anemia earlier. While B12, Folic acid, etc, do have a role in red cell production -- combo treatment is a whole other animal and often rescue drugs like Procrit (epo) are needed, regardless of vitamins. Rescue drugs are definitely somedthing to talk to your doctor about *before* treatment. I figure you probably know this but just thought I'd mention it in case you didn't.

All the best.

-- Jim

[GoofyDad]

'Scary Taint'. Me thinks that could be your new nickname.

Stay well. Glad to hear you're anemic. Congrats!!

[Morgaina]

Sorry, still plauged with the fog. Just reread your post and saw "no iron in liver". How did maintenance go. You should post one more entry in your blog to let us that have no connection to you know how you're doing. I'll bet there is a lot of us wondering!

[Myown]

Oh definitely will take the rescue drugs when and if needed. I believe in vitamins, but drugs have the bigger role in this disease for sure. Some may choose the natural path without drugs at all, but that's not my path.

I'll be talking vitamins "in addition to" the rescue drugs,if in fact rescue drugs "are needed" at all. Wishful thinking in hoping they are not needed.

If I wasn't clear to some in my above post,I can believe that and I fully blame the NJ Publik Edjucation system lol. I'm also one of those "wordy women." Takes me forever to get to my point,I'm sure you noticed, sorry, I know men are "give me the bottom line", species.

Do you know anything about cryoglobulins? Had the test, but it wasn't performed the way it was described in several articles I read on internet.I will let my doctor know how it was performed and see what she says. I would think she knows how the labcorp does it, but who knows. If none of her other patients are aware of the test procedure, no one would have told her or questioned procedure. I don't want a false negative, if God forbid I have it. I spoke to the tech about procedure, but that's another story.

Missmiss had given me a heads up as far as it being a sensitive test and must be done in precise way.

There was a thread on cryo on the forum and I posted a site where I saw an interesting article. It spoke of hcv particles being found inside the cryo. Evidently, the cryo jells as body temp drops and the HCV  get trapped inside the cryo.

My body temp is consistantly low, so I am afraid that with tx, some hcv particles, will find shelter from the interferon and riba by being trapped inside the cryo. Of course, my doctor will probably look at me cross eyed and tell me I should stop reading about hcv and she is probably right.

But, here is what I was thinking about or OBSESSING ABOUT..
I could be told I'm svr some day because of hcv undetectable in blood,, but if my temperature rises some time, the virus, if trapped and undetected, breaks out of the cryo, then enters blood and detected on test. Then told I relapsed, when in fact never really cleared?

Just a thought, hope I'm wrong, but maybe this why some people relapse. I'm probably way way off track,lost and down yonder some where, but who knows.

Also, if some "aren't diagnosed as having cryo",and in fact do, this too could be a reason for relapse,possibly?? With the cryo test being a tricky one,there may be many who have cryo without knowing.      

I'll run my theory cross my doctor.It seems very logical to me, but she will probably look at me cross eyed and tell me to stop reading about hcv. For me, that would probably be sound advice.  

I have read some people are on interferon for life with cryo and others clear the cryo.

I know I have to ask my doctor all this but any info or opinion is appreciated. I have to go now, but will be back shortly and see if you have any info.

If anyone talks about me and says I'm nuts while I'm away from the computer, I can take it, I'm strong like bull. lol

thanks

[Myown]

repeated myself twice saying my doctor will look at me cross eyed and tell me to stop reading about hcv. Guess thats a sign she will. lol.. brain fog before tx., thats not a good sign.

[Morgaina]

I found this sight through your sight. Your blog was a hoot. What does your new biopsy say. I felt I went through your last try with you and would love to hear some good news. New book finished??

[jmjm530]

Don't know a whole lot about Cryo. That said...

I also read about Cryo here so asked my hep doctor if I should be tested. He said I didn't present any cryo symptons, so it wasn't necessary. He's  a pretty savvy fellow regarding hep c, plus there was a lot of other stuff on my plate at the time, so I left it at that.

I also did read somewhere that cryo tests are usually only indicated when symptons present. I also read that in cases of Cryo, they generally treat the underlying problem, which in your case -- assuming you have it -- would be hep c, and you're about to do that anyway. Guess what I'm saying is why go fishing for something you may not need to, but certainly bring it up with your doctor if on your mind.

As to what you call "obsessing" on studies, etc, on Cryo and SVR.
Studies suggest SVR is durabble close to 99% for up to 7-10 years. It's most probably durable much longer, even permanently,  but as a relatively new disease that's only how far the data goes. Plus, I would think that in 10-20 years, one could reasonable expect that they would have this whole hep c thing nailed completely. There's no reason I can think of that cryo or no cryo effects SVR once you achieve it. With treatment about to start, I imagine you have enough on your plate to worry about, and I don't think theorizing about the durability of Cryo and  SVR should be one of them.

It's good that you're reading up on Hep C, but at least for me, it took some time before I could put everything I read -- especially on discussion groups like this -- into a perspective.

I always cross checked anything significant learned in a discussion group with either published study data or my doctor, and always both if it involved a treatment decision. A lot of stuff here gets passed mouth from mouth without anyone checking original sources.

That Clinical Care Options Web Site is a good space to spend a lot of time. A little technical maybe but you can stop the videos to take notes if necessary. If it doesn't make sense the first time, just keep going back to it.  The video modules by Dr. Dieterich -- "Something or another for the Hep Guy" and another one by Dr. Shiffman? are good ones to start with.  
http://www.clinicaloptions.com/Hepatitis.aspx
You must register, but it's free.
Another good site is Projects In Knowledge:
http://www.projectsinknowledge.com/
Also the Body: http://www.thebody.com/treat/hepatit_c.html

Also, regarding tx, make sure you get copies of all your blood tests as opposed to relying on phone calls from the nurse saying everything is "OK". And if you haven't had the "rescue drug" discussion with your doc, the time is before treatment, not when you can't catch your breath. Also, you really want a 4-week sensitive blood test for viral load plus weekly blood counts for at least the first six weeks with thyroid panels thrown into the mix every once and awhile.  Again, something to discuss *before* you start to treat.

Take care and good luck with tx.

-- Jim

[Mister beagle bailey]

I am a 2B with a starting VL of 318,000.  I did 24 weeks of treatment of tx.  I also have Thalassemia anemia and was UND through treatment.  Two month post tx my AST was 24 and Alt was 13, however at 3 month post tx I relapsed.  This make's no sense and I don't understand why.

I feel I was mislesd and angry abot the results.  Sorry I'm venting but I need to get this off my chest.

Beagle

[Myown]

Thanks Jim,
You'd make a great shrink. I feel better.

FYI I think the doctor may have wanted the cryo test because I had shown her some blood work. The original doc told me she would be watching me for an auto immune disease because my Antinuclear Antibody was showed 40 HI    NEG=<1:40.  Then when I mentioned to another doctor(PC) questioning the auto immune, he took a test, this one called Antinuclear Antibodies Direct and it was normal 27     U/ml 0-99.

so he said I don't have and autoimmune disease, but never explained why the other test showed 40 H. It's obvious it's 2 different tests, but very confusing to me. This has been on my mind, so I showed the liver doctor and I am assuming this is why she is testing. I'm worrying way too much I guess the wait is getting to me.

Thanks for your time.
Truly appreciate it.

[sfbaygirl]

My body temp was always low, between 94-95 degrees sometimes a little higher. I was worried, asked dr's. Read, googled etc. Not a lot on hyperthermia. No one has ever said a word about it to me when I asked.

After many months on tx, my temp is starting to rise. For the first time, I am having temps over a 100 degrees! I still go a little low, but not much.

A lot of times when I read things about sx or symtoms (symptoms) it becomes hard to separate out what you have and what you COULD have. Do you have Cyro? I don't think I have ever been tested, but now you have me worried! LOL

[Myown]

Hi Sfbaygirl,
The low body temp was thought to be slight hypothyroid. My thyroid numbers are pretty much in the ball park, but the reference range that doctors base our results on are way too broad, according to any holistic or non traditional doc. So I started to research and read some things of what Dr. Broda Barnes(he dedicated 50years of his life to studying thyroid) and I sort of agreed with the non traditional thinking of "if you have the symptoms of thyroid and are slighly boarder line, you do  most likely have it. So, now I am on natural thyroid, armour(prescription). So now I'll see if temp improves. But to tell you the truth this whole liver thing makes me think its all from the liver since it plays such a big role with hormones. Also just found out my progesterone is very low, which can mimick thyroid symptoms. (What your doctor doesn't tell you about menopause. Dr. John Lee... great book, if you haven't read it)

So, your temp went back up, that's good!

The cryo, was something my liver doctor suggested right before I was leaving the room. Duh, never asked why, thought she did it as part of the whole deal. But then when I got home, it hit me like. "oh no, what now?" so I won't know until I see her. As I mentioned that ANA test result may have been the reason she wants to do it. I don't know though, I feel like I am walking around with my eyes closed. Someone had mentioned on forum the feeling of being alone and its true, there are days you feel so alone, even though you have people around.  That feeling comes and goes. Some days I feel very up beat and other days down. Guess we all get that.

It might be from the worry about it all, seeing people relapse, having tough time during tx and go through different things has me down, anxious and just upset to be going through all this. I feel sorry for my husband, who is very supportive, encouraging and just a great guy. I know it must be hard on him worrying about me,as for all of our families.

Hope you are feeling better soon. Just read you have migranes (migraines),that's horrible.

I feel so blessed to have all you guys to turn to.

Not looking forward to tx in Oct, but who looks forward to it. I think maybe I should start with the AD's before I start. Didn't really want to, but maybe I should. Sorry for the whinning, just one of those days.

Talk to ya again, bye!Hope you feel better.

[sfbaygirl]

I started with AD's. I think it's a good idea. My dr. wouldn't tx w/o them. I still am depressed at times, but mostly upbeat, even though I feel like something the cat dragged in. Speaking of which, I have 2 adorable terriorist kittens. So cute, but they play with anything!

Yep, the temp went up. It hasn't been to 95 in a while. I felt hot even though it was that low. WEIRD! It was weird never hearing anyone talk about it much. How low does yours go? Maybe the tx fixes the problem... Hope so!

[Myown]

Hi again,
My temp went way low, 95ish. It's was averaging 96.7. Now its going up. I mentioned that to a holistic doc before I went on thyroid med and she said, "yes it may go up, but you have a virus in you and that can cause it to rise." Battin a thousand here.

Have you done that basil body temperature test thing- ah- ma -jig
In case your not familiar with it...you put your thermometer in reach before you go to bed. When you wake up, take the thermometer and place it under your armpit without tuning it on and leave it under your armpit for 10 minutes. After 10 minutes, take it out from under your arm and turn it on and again put it under your armpit until it beeps, then read temp. Do not get out of bed from start to finish or move around while you are doing this test.So that means your kittie cats can jump all over your face for about 12 minutes that morning without you stopping them.lol They'll be saying,"ooh what a good mommie we have, look what she lets us do." haha

This is supposed to be the most accurate way to get your temp. In case my instructions weren't clear, you can find them all over the internet.

Maybe this  basil test you know about and been doing, maybe I'm the only one who never heard of it before. Oh, digital themometer too. I guess no one has the old mercury thermometers anyhow. Never could read those things.

I may not have mentioned, can't remember,.. my progestrone is low too and that can mimic thyroid symptoms. I will have to start using the natural progestrone cream. Hope it doesn't raise my liver enzymes, but it definitely is not good to have un opposed estrogen in the body at this menopausal stage of the game.Plus it contributes to bone loss. I did saliva test. Check out the site. saliva test.com.(David Zava) My doc doesn't do saliva tests and saliva tests are much more accurate than serum for hormones. I brought the doc the test results and he gave me a prescription for progestrone. It can be purchased without prescription also. Dr. John Lee in his book about menopause gives you the guidlines of what to look for in natural progestrone cream. Not all creams are the same potency per ounce and evidently that is important. Does it ever end?? So much easier to be a man. I envy my husband. The standing up while you pee-pee is so convienant too, I'm jealous. lol

Well time to go to bed, I'm beat. Wednesday cat scan. Following week eye exam, then I'll see what else my doc wants to do. didn't do a biopsy, but I'm now wondering if i should. The risk factor is not pleasant to think about, but I am curious to say the least.

Have a good night. See ya tommorrow. Hope your migrain is gone and you get a good night sleep.

[sfbaygirl]

I envy your getting so many tests. It is like pulling teeth to get them for me.

Interesting about the basil temp. I bought 3 thermomitors b/c I was sure they weren't correct. If the virus causes the temp drop, maybe that is good news that my temp went up.

The terrorist kittens are beginning to like to type. They LOVE the pointer on the computer. Listening to the tear around the bedroom and chase each other across our bed is really fun! Thankfully John sleeps well. I have been waking up in the morning to find one kitten in each of our sinks in the bathroom. They are alot of fun and keep me entertained when I am down for the count.

Menopause at least doesn't last forever.

That  must be hard having your sugars go up and down like that.

Migraine seems to be gone! a few aftershocks, but I have 2 weeks of hopefully no migraines until the next neup. It makes Interferon/Riba seem like nothing in comparison.