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206807 tn?1331936184

Does anyone know why tx affects us all different?

Does anyone know why tx affects us all different?
We all know it is a Krap Shoot, but why?
Some people can endure 72+ weeks and others can’t do but a few weeks.
I refuse to believe Will Power is the common dominator of completing.
One of my pet peeves is when I see someone say It Is Doable. It is not Doable for everyone, but why? Why do some people suffer post tx and other are unscathed? Is it Genetic?
I really would like to know if anyone has any Studies of why we are all affected differently.
I will give everyone a fair warning. If you did not suffer from major sx and suggest it is has to do with attitude,
I will Rip You A New One.
17 Responses
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206807 tn?1331936184
This is great news
Helpful - 0
717272 tn?1277590780
It means they are a drug manufacturer and don't make diagnostic tests. That statement by Schering was in the original press release back in August when the study results were first published in Nature on-line.  At the AASLD liver meeting in November they presented the study and on clinicalcareoptions conference coverage (http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/AASLD%202009/Tracks/HCV%20Treatment/HCV_Treatment/Pages/Page%205.aspx) they said that a commercial assay will be available to clinicians in early 2010.  Anyway, between the original publication and the liver meeting, Schering seems to have found another company to develop the test.  Don't know who but I'm sure we'll hear about it.
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206807 tn?1331936184
“That's stretching it pretty far in my opinion. The waters are hardly uncharted.”
I don’t know Mike,  Even though we have come along way in recent years, I think we have only scratched the surface.

Newleaf, I found the study encouraging but I am confused about this part. What exactly is Schering-Plough saying?
“The study was financed by Schering-Plough, which owns the intellectual property rights on any diagnostic test developed from the discovery. Robert Consalvo, a spokesman for the company, said that the finding was an important first step but that he did not know of immediate plans to develop a diagnostic test. “Schering-Plough is not a diagnostic company,” Mr. Consalvo said.”

Willy- “It could be true but I've never seen posts that reflect more issues with geno 2's”
this was strictly my opinion not based on any studies but mostly PMs from other G2s. It would be interesting to see a study on the sx and post tx problems based on Gen. Type. It would seem like a very easy study to do. I am planning to read the PDF by Roche later.

Bill-  “If none of us had hcv, some of us would have arthritis, thyroid problems, joint pain, cancer etc.  People had these issues way before interferon was invented.  My opinion is that some of us are prone to these things and hcv and interferon seems to bring them to the surface perhaps a little sooner.”  That’s another possibility. Over the 2.5 years I have been here, I have read several people claim that they feel much older than they did before tx. Speaking of which, I only got about 3 hours of sleep last night so, I am going to take a nap.

Helpful - 0
717272 tn?1277590780
oops sorry.  Somehow I missed the purpose of your original post: to question why everyone has such different side effects to TX.  Did not mean to highjack.
Helpful - 0
717272 tn?1277590780
Willy50, thanks for posting the Pegasys info.  The Pegintron redipen label does not read that way.

Bill1028, you must be in a Schering Plough (now Merk) study.  I contributed to that one, too and it is more confirmation for the published study about the polymorphism.  Schering owns the intellectual property on the discovery and will assign someone else to develop the screening test.  Clinicalcareoptions article says the test will be out this year.

I agree that the test could be used against you by insurance companies, so why not pay for it out of your own pocket so it does not cross their radar?  The test could tell you if you had partial response so you could wait and add a protease inhibitor or polymerase inhibitor to be surer you would cure.  For non-responders, they can wait and add a PI and treat for the maximum time to improve their odds considerably.  Anything that would save those pre-destined for poor response from failing and suffering through therapy unnecessarily would be a good thing.

I also agree that some of our problems were going to pop up anyway and immunotherapy just muddies the waters and makes everything more confusing.  I'm hoping we will get completely away from interferon for HCV treatment within the next 10 years.

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Avatar universal
LOL; I'm the construction worker that I was referring to; not you.  ; )

Seems like I've gotten in trouble with that line before.  : )

Willy
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Avatar universal
Hey, thanks I guess, for quoting me, but mostly I read it and think it's a vast (and somewhat inaccurate) oversimplification of a construction worker.  It could easily be 180 degrees off, but the part you mention about how it fits with geno 2's could kind of fit together with it.  If it was a simple as that though, I would imagine that we would have record of more genotype 2 problems.  It could be true but I've never seen posts that reflect more issues with geno 2's, but maybe that has been off my radar because there are fewer geno 2's.  I would think that doctors would have noticed that more geno 2's they cured fell into post TX issues.  It's all theory from the peanut gallery; I surely don't know.
One has to balance the risks against rewards.  The rewards are well known and understood.  I'm not sure one could say that of the risks.

....as it pertains to autoimmune issues and Pegasys.....
Here is what warning comes on Pegasys (from their own PDF)
http://www.gene.com/gene/products/information/pegasys/  

(click on  "Full Prescribing Information"  hyperlink at the bottom of the page- willy)

(lines 1285-1289)
"Auto immune problems:  Some patients may develop a disease where the bodies own immune system begins to attack itself (autoimmune disease) while on Pegasys therapy.  These diseases can include rheumatoid arthritis, systemic lupus erythematosis, psoriasis or thyroid problems.  In some patients who already have an autoimmune disease, the disease may worsen while on Pegasys therapy."

There is a lot of interesting info in the 51 pages of reading (in the form of a PDF) put out by Roche.  It is well worth a read.

Willy
Helpful - 0
154668 tn?1290115995
I was talking to my trial nurse about being genetically tested and she told me to be careful about doing it.  Suppose that you have the test done and the results are not favorable, could the insurance company use that against you by denying additional treatment?  By the way, as part of the trial, I did sign up to allow the drug company to do genetic testing and the results will not be shared with me or anyone else.  Then again, I'm a 3 time tx loser, I guess that I already know the results...duh.

Back to the original question, we seem to forget that we are a cross section of society.  If none of us had hcv, some of us would have arthritis, thyroid problems, joint pain, cancer etc.  People had these issues way before interferon was invented.  My opinion is that some of us are prone to these things and hcv and interferon seems to bring them to the surface perhaps a little sooner.
Helpful - 0
717272 tn?1277590780
http://www.nytimes.com/2009/08/17/health/research/17hepatitis.html?_r=1
http://www.nature.com/nature/journal/v461/n7262/full/nature08309.html

These are links to a genetic study published in Aug in Nature on-line.  The actual study data was presented at AASLD liver meeting in Nov. and can be found on clinicalcareoptions.  It was a Nobel worthy breakthrough.

It's all about your personal genetic response to interferon.  Interferon monkeys with the immune system, pretty unpredictably, so they'll never be able to predict the side effects but they'll be able to predict your response more reliably once they know your genetics before your TX starts.  

Expect a slew of new TX time length trials to pop up in the next few years.  I think that people who have the favorable genetics will end up TXing for 12-16 weeks instead of the current 24-48, regardless of genotype, VL or fibrosis.  Gonna get interesting.
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Avatar universal
"Since Genetics and the Immune System are still fairly uncharted waters, we may never know the answer in our lifetime."

That's stretching it pretty far in my opinion. The waters are hardly uncharted.

Mike
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206807 tn?1331936184
. I guess “Ripping A New One” was a little strong but, I have a bad habit of doing that when I’m trying to get my point across.
A lot of well thought through, intelligent, responses. I find them all interesting. This really has the wheels turning in my head.

“One area that science is not as advanced on is the immune system.  Basically, TX ends up messing with the default setting of the immune system so it will attack the virus.  At some point there is no virus to attack.  It may be that the immune system may look for something else to attack, such as is the case in autoimmune issues.”

I notice a lot of G2s suffered from bad sx and post tx issues, especially the older ones. But I was G2 so it may have just seemed that way to me. Since G2s are generally easier to treat it would make since that the immune system may look for something else to attack.
It seems if one was G2 and RVR, they could cut back on dosage around week 12 and still have the same shot at SVR (I am not encouraging anyone to do this).

Since Genetics and the Immune System are still fairly uncharted waters, we may never know the answer in our lifetime.

Diamond_Lil- I am doing quite well lately. I am almost afraid to say it because of fear cursing myself.
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Avatar universal
In my opinion it's mostly about genetics.  My brother could die from ingesting peanuts in any form and in miniscule amounts, but I've always loved peanuts. My sister and I are made quite sick from certain cleaning solvents that most other people, including my brother, are unaffected by. (She doesn't even have hcv like me).  The point is that there is genetic diversity even in families, much less the whole race.  Lethal radiation doses are usually graded by the percentage of people that will die from a specific exposure, there is no breaking point above which everyone dies, and below which everyone survives.  Some people didn't die from the  Black Plague.  Some utilize and store calories much better than others and better survive famine...or become over-weight in good times.   Some get deathly sick from taking Peginterferon/Ribavirin, and some don't.  It's not so much about how tough you are I think, rather than individual body chemistry.  I don't believe that anyone can judge another's will power when they can't possibly know how sick that person is feeling. That's not to say motivation and plain old stubborness doesn't help the folks in the middle of the pack, but neither of these traits will get you through tx if the drugs are killing you, or if as a gen 1 you feel that the 40% chance of success is a just plain bad gamble, unless you experience light sx like some do (I'm jealous of these guys) .  I tried tx even after all the research I did scared the crap out of me, and if my sx would have been less severe, I might have been successful , because my enzymes dropped quickly.  My sx were immediate and really tough, and my industrial tech job required some strenuous physical and mental exercise in hostile environments.  I was dismayed to see I wasn't going to cut it, and disability checks were much lower than my pay.  I didn't have to make the tough decision, when I went into what I now know was Atrial Fibrilation, my doctor stopped tx for me.  Was I not tough enough?  Even not counting the AF?
You can look all over the web and might not get a satisfactory answer to your question other than a vague, "Everyone is different".  I think that if they had serious answers, they would be able to specifically tailor tx that would be do-able and effective for each patient based on your genetic profile.  Our level of medical tech is just not there yet. Hopefully it will get good enough, fast enough, to give the many pegint/rib-intolerant a chance to be free of this virus before it's too late for them.

By the way, did you know that  the FDA isn't allowing stat-c combinations ( protease +polymerase inhibitors) to be tested in the US without pegint/rib because "it would be unethical to withhold the only form of therapy proven to work" from the test subjects?  This policy is forcing the testing to be done out of country.  Sheesh!   I was so p****d that I fired off  a letter complaining about this poorly thought out approach, and was surprised that they actually acknowledged me.  But I'm just one voice.  Maybe if they got a lot more letters, those bureaucrats would wake up and realize that there are desperate people out here.      
Helpful - 0
Avatar universal
I think, everybody reacts to treatment in different way just because we all are different in so many ways. The "blueprint" is the same, but the number of differences is huge. The way our brain chemistry is set up, our moods, attitudes, how we digest food, our weight, metabolism level and many other things differ greatly from person to person. And a lot of these things are genetically predetermined.

I believe that one day it will be possible to take a test to find out who will respond to a certain therapy and who will not; who will tolerate it well, and who will have a lot of side effects.

It is amazing, but there are people who take very difficult treatments and tolerate them very well. My mother in law right now is receiving chemo for breast cancer, and she feels great. Has a lot of energy, and her hair didn't fall out, though the doctor warned her that they will. I am very happy for her; I expected that chemo experience would be quite different.

Bill, this is amazing story. Thinking about it, it would be nice to know somehow in advance that this guy didn't need 48 weeks and can achieve cure in a much shorter time. If he would agree to continue, he would suffer needlessly for many weeks.
It sounds like a miracle.
Helpful - 0
148588 tn?1465778809
Speculation on my part, but possibly where the IFN alpha was sourced from, may play a part in the wide range of reactions to tx.
If so, it would probably be in this link:
http://www.uniprot.org/uniprot/P01562
...but I don't have the biochem to even begin to understand it.
Helpful - 0
Avatar universal
Antiviral treatment is exclusive to the individual.  I don't think there an answer to that question simply because what applies to one does not always apply to the next or the next or the next.

I do understand where you're coming from and hope things get better.

Diamond_Lil

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Avatar universal
I'm 56; I could use a  *new one*.  ; )

You know what they say about opinions.....  and of course I have one.  

First one has to agree what all kinda long term sides we are talking about.  Everybody has different issues but many of them are familiar to us on boards.  Like you say, it all affects us differently; why?

Some of it could pertain to dosing.  I can think of a few people here who did heavier doses, double does, extended doses and had post TX issues.  In the balance I know of people (like Bill1954) who did rock star amounts of the drugs and didn't seem to be negatively affected by them.  Others like Lauri did short term and lower amounts and seem to have been affected.  And so I think we know that the sheer amount of drugs one does (# of weeks of drugs X dose of drugs) isn't the only factor.

Some of it could be the way that it affects the immune system.  Some people have strong immune response, others have a weaker response.  Is it because of the toughness of the virus or is it their own innate response when given interferon?  I don't know the answer and it would appear that if modern science knows....they are not forthcoming with what is going on.  Most of the doctors appear clueless about how to treat it.  It seems to me that we often hear that peoples labs are normal.  I would think that if it were something simple like a depleted vitamin, or some type of over the counter drug one could take.....then i think that it would have been discovered by now. (having said that I still wonder if some dietary levels of vits or trace minerals could help some folks).

One area that science is not as advanced on is the immune system.  Basically, TX ends up messing with the default setting of the immune system so it will attack the virus.  At some point there is no virus to attack.  It may be that the immune system may look for something else to attack, such as is the case in autoimmune issues.  I'm not saying that's it, just that I wonder it it could be that, in part.

Interferon also affects the brain.  The brain like the immune system is not well understood.  Basically when put on chemotherapy for extended periods of time people like ourselves.....cancer patients....end up with a variety of post TX issues.  Once again, it can save their lives..... I have friends who it saved and who seem to suffer no consequence (other than being saved from death, that is).  Other do not fare as well.  I know that researcher struggle to differentiate whether the issue is changes in the body (hey; like testosterone production) or whether the brain function has changed.  I think it's hard to separate the two when often the symptoms could come from either.  The brain is the computer that runs the body...... could be that in part.  In 50 years they will pretty much think that a lot of the early work done with brains would be like letting your 8 year old son work on your fuel injection system of your Mercedes.  ; )

Here is another real wild card.  They are finding that some people with chronic fatigue have a virus; XMRV.  What the hell is that?  I'm not sure that I know, but for some people it could exist below the surface and then wake up and start kicking a$$.  It is blood borne, so some some of us could have it.  I haven't heard or read much about it yet but like "non-A, non-B hepatitis" there could be a separate issue that affects some people and not others.  Perhaps one could say that it isn't HCV and it isn't the sides from TX but perhaps some stressor (like HCV or TX) could cause it to wake up in the same way that shingles does.  I'm just using this as an example; not blaming it on the new virus.  It could be something like this that creates the occult type reaction and in random groups.

Well, this is just my nonsense posted to avoid working.  I'm *now* back on task.  I don't know the answer but I'm in good company.  ; )

If you rip me a new one, I'll plane and sand it and put on 2 coats of poly.

best,
willy

Helpful - 0
87972 tn?1322661239
Hi Ricky,

I managed reasonably well through treatment; enough so the doctors gladly allowed me to significantly extend both treatments. However, I’m involved in a local HCV support group, and have seen first hand how badly some people react to therapy.

I do think that attitude, like in all facets of life, is important; but it doesn’t overcome things like anemia, neutropenia, psych problems, etc, etc. I’ve seen folks that couldn’t manage three or four weeks of treatment… this had nothing to do with their attitude, they were too d@mn sick to continue.

I don’t have any idea what causes the disparity in side effects; why some people practically waltz through, while others end up in ER.

We have a guy here locally that received a transplant; he was at end stage when he was initially diagnosed, and didn’t have the opportunity to treat before hand. They started him on Tx shortly after transplant in an effort to prevent damage to the new liver. He was GT-1, and managed IFN therapy for 8 or 9 weeks, before he told them they could take their interferon back, and perhaps the new liver if necessary; he wouldn’t do this stuff any longer. Astonishingly, he achieved SVR with that minimal treatment and remains virus free to this day.

I tell you this because ‘Buzz’ is by anyone’s measure a tough hombre; brick/block mason, long time biker, etc. He wouldn’t have quit his IFN treatment on a whim… it made him deathly ill. I’m *firmly* sold that it’s a highly individual process, and not some ‘defect’ in character that drives folks to quit or complain about treatment.

Bill
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