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Hi fret, I just want to address this one tiny line in your post. I want to clarify that those who advocate waiting don't advocate waiting until you have symptoms but waiting until your biopsy and your CBC's etc show that you're progressing in damage. Symptoms aren't a good measuring stick to go on as you can have NO symptoms and still have progressed liver damage.
Where symptoms come into play, to me, is when you're starting to get other illnesses that are potentially from you carrying this nasty HCV virus in your blood long enough for it to start doing damage to other systems and creating other health issues. One of the reasons I chose to treat now is that I'm 47 and I ain't getting any younger.. and I'm disgustingly healthy in every other way. So before that changes, I wanted to get at it.
As for your question.....weighing out the risks of what the treatment drugs can potentially do to your system....I thought about that myself. Only in my case, because I have always had this great constitution and have been in reasonably good shape healthwise from running, the risks were not as great as others who had to balance a number of health issues. The risk for me was creating health issues were before I had none. I'm kinda counting on my good fortune at being in this kind of shape to begin with to get me through that along with careful monitoring of labs all the way through too.
So at that.. I'll leave it to others who had greater considerations to take into account that can speak more to where you're at.
It's a good question, fret.
Trish
Fret...
Hmmmm...
OK - let me try to clearly state this --- and note that it is only my experience and my opinion... alright?
I don't think you can possibly know what is going to happen to YOU... Until YOU go through it.
Some people cake walk through this treatment.
Others respond viciously.
Some fall in-between.
Just like the viral response: Some pass, some fail, some improve or have to repeat.
I think each person will respond differently --- and some of it has to do with just "how much you can take"... In response to the side effects.
There are some side effects you just cannot ignore.
Those would be: Breathing problems, swelling problems, circulation problems and mental health issues.
Some people on this TX cannot handle it mentally... They don't even know that they are falling apart - which is why I am TOTALLY advise for people to keep a journal DAILY of feelings and sides... because the mental part can creep up on you - and you don't even notice it... It's an insiduous feeling.
And I don't know if ANYONE else will admit it - but I can tell you - there were some very brief flashes of depression for me --- which if I hadn't been such a happy-go-lucky person naturally --- I could see where someone else might have climbed a 20 story building and jumped.
So - you have to be MENTALLY prepared for this TX.
If you can get through the grueling side effects ---- and you're mentally prepared for TX --- then you can handle it.
I'll be very honest - you've got a leg up on most people. When I first started TX - I didn't have a clue about the disease - nor about the TX... I was -- here take this --- people might feel a little tired, but that's it...
Ha ha the freak ha...
I had moderately severe side effects.
I fell in the OMG -- WHAT THE HECK group... LOL!
I'm surprised I kept my job - I'm surprised I made it all the way through...
I didn't have advance warning of the total knock out on this treatment... Didn't have a CLUE that it could happen.
So when it did - I was flabbergasted - but couldn't do anything about it.
I mean totally shocked.
In fact - my boss was the one who said --- I think that this is a serious treatment - you might want to sign up for FMLA ahead of time.
Thank Goodness he did too!
Cause I needed that FMLA stuff.
But --- I think if I had been mentally prepared - it might have been a bit better.
Not that the sides wouldn't have happened --- but I would have known more of what to do - and I wouldn't have freaked out as much.
Being alone in this TX is hard. Even though I have a very caring and supportive family and network of friends --- I felt as though I was doing this alone... and no one -- but someone who has or is going through it --- can understand.
So --- should you do a TX?
That is entirely up to you.
I am PRO Treatment...
But if you asked me --- would I do it again if I had not cleared?
Probably NOT.
I think treating - or trying to treat is VERY important --- if you want to kill the virus.
If the virus is killing you - then --- probably your answer is going to be: Yes.
Will there be new cures coming along?
That part I don't know.
I don't exactly trust the medical community - not necessarily the doctors... mostly the pharmaceutical companies... anymore.
I've learned that they don't disclose everything.
And I've been saddened to learn that even the BEST doctor's don't know everything... Life was a lot easier when I believed that doctors could cure everything and were Gods.
Now, I know they are human, just like the rest of us.
So - you have to gather your own information - you have to flip your own coins and make your own choices.
Whether or not it will cause permanent damage... NO ONE can tell you that.
But the sides can be rough - and they can feel like they are permanent.
I have probably permanent Neuropathy (extreme pain from nerves that I thought was arthritis in all my bones, muscles, etc... which IS probably Fibromyalgia... but we're waiting for a couple more months) now from TX and HCV... But no one can tell me if it's from one or the other.
So - besides the detrimental side effects (breathing issues, circulation issues and mental issues) if you can hang out and do the entire TX --- then YOU can do the TX...
Will there be residual effects?
I don't know... each person is different.
Some clear it all completely and run on with their lives.
Some are changed physically and suffer -- like Frank J. Perotta.
Some are changed mentally and get divorced or live differently...
Some are changed all over --- and have a new view on life --- either positive or negative.
YOU will be changed - that much I know.
But which way YOUR pendulum swings is entirely up to your genetics, your mental capability - your health and your emotional state.
So fret --- I dunno if I answered your question(s)...
But I tried to lay it on the line for you.
I'm sending you lotsa love and hugs... No matter what you decide - this forum is here for you.
Meki
And Trish is Right... Don't wait for Symptoms... Damage and SIGNS...
Symptoms are what someone tells you that you are feeling
Signs are what can be seen medically or visually (microscopic slides of the liver qualify for signs... LOL!)
I seem to recall some medpub (posted here) about blood tests that can indicate whether you are more likely to respond to therapy. Genetic response to interferon. Or am I dreaming? Does anybody remember that? It might have been test tube stage or something though. I guess even if I ended up with permanent damage from treatment, if I knew I had a good shot at SVR and it kept me from croaking, I would rather deal with the QOL issues.
If my HCV wasn't bothersome, and I knew it wasn't gonna kill me for a long while e.g. 0-1, personally I would risk waiting a few more years to see what happens with the new stuff. And believe it or not, I am saying that as I am all worked up wishing I had started treatment a couple of years ago. Hindsight is a b*tch.
Foo
The only things I would add...
* Get the best, experienced in HCV doctor possible. You will need them to work with you on your journey through treatment, interpret test results, and to deal with any medical issues, insurance, disability issues that may arise during treatment. You want someone to support and back up when you may not be feeling well.
* Get all the data in front of you...
genotype, viral load, biopsy results, other heath issues, etc....
And try to figure out your odds of success, realizing of course everyone responds differently to treatment for good and for bad.
But as Meki says you don't really know what is going to happen until you treat.
If you are worried about the duration of the treatment and the possible permanent medical impact treatment can have on your body - by measuring your viral load response over the first 12 weeks of treatment it will give you and your doctor a very good idea what your chances of SVR are. If you are not responding to therapy you can make the decision to stop and possibly retreatment when new meds come to market.
It's a very personal decision. You must make your choices and take responsibility for them. Remember like life; there are no guarantees. But is you don't risk you will never know what could have been.
I wish you all the best in deciding what is right for you.
Hector
Trish
As others have said no one can predict how difficult treatment will be. But having a good hepatologist treating you will certainly improve the odds of picking up bad side effects quickly and dealing with them. Although the drugs for SOC haven't changed recently, the rescue drugs have.
Most docs prescribe anti depressants prophylacticly now and that greatly reduces the mental side effects. The most important decision is choosing the doctor.
Good luck
As long as you go in in good health and follow directions perscribed to you and your situation, your risk of any long term adverse condition is minimal. You get blood tests every two weeks that monitor our basic functions so if'n something shows up the Docs will stop treatment or adjust it like they did with me.
Diabetics have problems, so do people with kidney disease, mental health problems,hemopheliacs and the list goes on but Doctors will monitor issues and adjust things to your benefit with the knowledge that we as patience have given them. 80% will clear the virus in the first four weeks of conventional therapy, the trick is keeping it undetectable! Killing this bugger has it's risks but not as bad as the risks we took when we got this thing.
I have been left with some neuroligical issues, possibly MS,at least fried circiuts in the lower body, my wife says up stairs to but thats another issue. But I was having some pain before treatment that lead to the Hep diagnosis so who's to say the treatment did it or was it the Hep or just payin the piper.
I hope your payed up.
Harry
The doc asked extensive questions about whether or not there was a history of depression, suicide, etc. (Since my husband is a combat veteran, the doc was very thorough on this count.) He also queried carefully about any previous history of any auto-immune disease(s). We were informed that the most common reason people don't complete treatment were side effects of depression (in his experience, anyway).
Basically, the doc said start treatment, and if the side effects become too difficult (or contraindicated -- my husband has hx of cancer, cirrhoisis, and cardiac disease), treatment would stop. As a geno 1, my husband has been told 48-72 weeks, but as far as the sx, it's sorta "cross that bridge (if and) when we get to it." Hepatitis roulette gives russian roulette a run for its money, eh? The hope is to stay in the game long enough to win -- if we don't run outta chips first...
Best wishes,
eureka
Atleast for those of us who have reached a certain age, certain grade of fibroses, certain amount of relapses.
I´ve heard that it normaly takes about 30 years to develop and determen the efficacy of a new drug
this drug has been out for 10 years I dont have the time to wait 20 more years the doctors probebly have, rather then being sued for overdosing.
I dont now if i can settle for tx with only 50 or less% chanses of succes.
Were do you stand? Find that out listen to what others have done, were they succesful or not. Why were they succesful did they gamble hard was it stupid in your opnion or would you have done the same.
I´m gonna talk about five people on this forum that I know about and try to give their brief latest tx story.
I´m gonna begin with andiamo, miked and susan400 one succes one probebly succes and one not so succesful so far.
All this persons participated in vertex telaprevir prove 3 trial. Miked who was a partial responder geno 1b faild first tx 3years before trial. RVR 2weeks UND in studie, now SVR.
Andiamo geno 1a did his 8 treatment in the studie RVR 2weeks UND, now 8 weeks post still UND.
Susan400 did her 8th or maybe 9th treatment in studie got placebo instead of riba relapsed and now possible resistent to all such meds as telaprevir and its relativs.
All of them took the risk of ending up as susan, would you have taken such a risk fret?
Now Im gonna talk about two geno 3s both relapser flguy and gauf,
flguy pretreated with riba and doubledosed peg for 4weeks RVR week 2 UND in soc now SVR .
gauf treating third time using supplemenst recomended by HR before and some still on tx I think.
Doubledosing peg and also (not sure here) higher ribadose then requested.
dont think gaufs doc knows his true doses correct me if I`m wrong .
gauf has just started we hope for early RVR because I see a red string here 2w UND
So bottomline to stay in the box or not stay in the box thats the question !!
Take care and may the good God protect and lead you!
ca
I was in to the Liver Clinic to discuss treatment and they said that with Genotype 1 you have to wait 24 weeks before you can assess if the treatment is working or not. So you are committed for at least that time.
I have the genotype 1 and am only at stage two after having Hep C for 30 years so have decided not to treat. The success rate with this genotype is only 40%. I am also a runner and very fit. I do not drink and have been taking milk thistle for over ten years. Ten years ago my enzyme levels shot up so I started taking milk thistle and they have been better than normal since then. I had my first liver biopsy last year and will have another next year. There is no way I am taking treatment unless my disease progressed significantly. My doctor feels that with my lifestyle and at the rate things are progressing that I may never need treatment.
I hope your decision to treat is based on a liver biopsy result and not fear.
Vivian (age 51)
http://www.edc.pitt.edu/virahepc/ancillary.html
See below that led me to the site above:
http://www.ddw.org/wmspage.cfm?parm1=843
http://www.eurekalert.org/pub_releases/2008-05/aga-lds051808.php
Combination Antiviral Therapy Differentially Affects Dendritic Cell Chemokine Receptor and Maturation Marker Expression in Chronic Hepatitis C Infection (Abstract #461)
Researchers have found that current therapy for hepatitis C virus (HCV) differentially affects dendritic cells – the most potent stimulator of T cells. Treatment for HCV, a viral infection affecting the liver, typically involves 48 weeks of combination antiviral therapy. This therapy, which induces flu-like symptoms for patients, successfully combats HCV in only half of the cases.
Working with participants in the Virahep-C study, researchers examined 64 patients with genotype 1 HCV, the most common and hardest to treat strain of the virus. Blood samples were studied from each patient prior to and 24 weeks after undergoing HCV therapy. Investigators studied the frequency of plasmacytoid dendritic cells (pDCs) and myeloid dendritic cells (mDCs) and measured the median fluorescence intensities (MFIs) of chemokine receptors and maturation markers.
Researchers found that pretreatment frequencies of pDC and mDC were significantly lower in HCV patients than normal controls. They also found that some, but not all, inflammatory chemokine receptors and maturation markers were elevated at baseline, in patients compared to normal controls, suggesting incomplete maturation.
In addition, they found that the levels of pDC cells in those who responded to therapy normalized, while non-responders did not. Levels of maturation markers and chemokine receptors also normalized in patients who responded to therapy. Patients with increased pre-treatment pDC migration to chemokines were less likely to respond to therapy.
“If we are able to use DC cells studies to predetermine who will respond to therapy and who will not, we can spare some patients from a long and painful 48 week regimen that is ultimately ineffective. Further, this research tells us that the DC cells may hold the key to finding improved therapy for chronic HCV patients,” said John A. Mengshol, MD, PHD, fellow at the department of gastroenterology and hepatology at the University of Colorado Denver School of Medicine.
Everyones circumstances so different yet so similar in that we all want the same thing.... our health back.
I have decided not to tx again. Tx for me was fairly easy however I relapsed post 6mo.
I 'm 56 & healthy even thoughI am bridging fibrous and have portal hypertension but have good blood flow and show no variscies and liver enzymes are normal.I feel good!!! Right now that is whats important to me.I also take milk thistle and other supplements.
My plan is to wait for new drugs to become available hoping I have time and making the most of the time I have. With our health issue no way to know what is the right or best decision.
What ever you do ....do with gusto
Wishing you well
hopeful51
You can also ask your doctors ahead of time what they'll be watching for and what the plan will be if any of the "markers" they're watching for hit a danger zone - does that mean an extra drug into the mix, a dosage reduction, a trip to emerg, what? And what risks do you face? You can also ask them what are the chances of those issues flaring up, based on their experience. Gather as much information as you can about how they treat people with your specific health issues.
Your docs SHOULD be able to answer those questions, particularly if they plan to treat you with your current health considerations. Has any of them said you should NOT treat?
In the end....knowledge is power. The power to make the best decision for yourself possible and to be better prepared to go into treatment knowing what could happen.
Frankly, I think it's been easier for me to deal with treatment because I knew what could happen. Each time a "side" came up, I would say "well, I knew that could happen" and then just go with the strategy that goes with that side.
You are Stage 1 or were at your 2005 biopsy, yes? Depending on what information you gather, you may decide that you want to wait for better drugs that make may potentially make treatment shorter. It all depends. For me, the impact of HCV on my life in various ways and the potential impact was such that I wanted to treat sooner than later.
That's all we can do .. is learn as much about our own variables as we can and then, after considering them, go ahead.
I had different variables than you ... but it was still a big decision based on my own variables. I had to consider the potential impact to my employement status, my abilities as a parent, the potential impact of proceeding on to 72 weeks if it seemed necessary, the impact of the side effects hitting me harder than lesser... and the potential of the treatment giving me health issues that might not go away...like thyroid issues .. when I've been completely healthy in all ways up until now.
I wish you good luck, fret.
Trish
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I know exactly where you're coming from, ca. As genotype 1, my husband was told 6 months ago by one of his hep docs he should treat -- with a 40% chance of success, my husband was not at ALL interested -- at the time. He was finally feeling like his old self after 3 extended hospital stays and said NO way.
The passage of time and circumstances are changing his mind, though. As a stage 4 just diagnosed last year and starting to learn more from his oncologist and hepatologist about the risks of both HCC and ESLD, he's decided he's going to try treatment -- even thought his chances at cure have been lowered to 25%. (It's the "gamble" he's willing to take, given that as many as 90% of HCC patients, even those resected, have recurrence within 5 years. ) Sometimes it's not about what you win, but what you can't afford to lose.
eureka
I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome.
As to your cholesterol, unless you perhaps have very advanced liver disease, it's difficult to understand why your doctors will not prescribe cholesterol lowering drugs such as statins. All the hepatologists I've consulted with said that statins were safe to take, HCV or not, as long as your liver enzymes are monitored on a regular basis -- but that's pretty much true with anyone who takes statins. Perhaps the doctors you've spoken to re statins are not liver specialists (hepatologists)? A lot of outdated and outright misinformation about Hep C even in the medical community. My suggestion is to find a good hepatologist before you pass on taking statins, assuming they are medically necessary.
-- Jim
Ok if there is absolutly no other options I can understand, like if you know you probebly gonna die in a short time if not.
I´m in a study right now for relapsers geno 3 but i know exacly from the begining what meds and what doses I was gonna be given, otherwise I would never joined up.
What Flguy was saying about increasing the odds for svr,( I wanna underline his whole post think it was the best adwice i ever have heard in the subject) was exatly my point about getting out of the box can you get a doc or even a whole team of docs with you out, that would be perfect.
ca
Patients With Hepatitis C
Incidence of Statin Hepatotoxicity in Patients With Hepatitis C
Khorashadi S, Hasson NK, Cheung RC
Clin Gastroenterol Hepatol. 2006;4:902-907
Summary
Drug-related hepatotoxicity refers to an injury associated with impairment of liver function caused by exposure to a medication. Overall, drug-related hepatotoxicity is relatively uncommon, with an incidence ranging between 1/10,000 and 1/100,000.[1]
The statin class of medications — drugs used to treat hyperlipidemia — has been associated with a spectrum of liver injury, ranging from increased aminotransferase levels (0.2% to 2.7%) to rare reports of fatal hepatic failure. Usually, the hepatic enzyme elevation occurs early in the course of therapy — typically within the first 3-12 months of initiation of the medication. Most of these elevations are asymptomatic and associated with higher doses of drug.
This well-recognized association between statins and liver injury, albeit relatively rare, has led to recommendations by the pharmaceutical manufacturers as well as expert physician advisory panels for routine monitoring of liver enzyme levels in patients receiving statin medication and avoidance of statins in patients with active or chronic liver disease. However, there has been recent challenge to these recommendations, given data suggesting that at least in normal-risk patients, there was no difference in statin- and placebo-related hepatic enzyme elevation.[2] Indeed, the most recent clinical guidelines on the use of statins in patients with diabetes mellitus did not even recommend hepatic enzyme monitoring unless the baseline values were elevated.[3]
However, the clinical assessment of statin use in patients with chronic liver disease is less clear. The aim of this study by Khorashadi and colleagues was to assess the use of this class of medication in 3 cohorts: 166 patients with hepatitis C on statin therapy, 332 patients with hepatitis C not on statin therapy, and 332 patients on statin therapy but without hepatitis C.
The 3 study cohorts were appropriately matched for age, sex, and body mass index. For patients in the first cohort (hepatitis C, statin therapy), they found a higher incidence of mild-to-moderate elevations in aminotransferase levels compared with those not on statin therapy (22.9% vs 13.3%; P = .009), but a lower incidence of severe increases in liver biochemistry (1.2% vs 6.6%; P = .015). Overall, for patients on statin therapy there were no significant differences between the hepatitis C-positive or -negative cohorts, with regard to mild-to-moderate aminotransferase increases, severe increases in aminotransferases, or the need to discontinue statins as a result of hepatotoxicity. Therefore, statin therapy was not associated with a higher risk for severe hepatotoxicity.
Viewpoint
Drug-related hepatotoxicity cannot be viewed as a single disease. Many different mechanisms lead to hepatotoxicity, which may be predictable or unpredictable. In the case of statin-related injury, it seems to be an idiosyncratic reaction that is not predictable. Additionally, the evidence would support that no relation exists between the type of statin used and the occurrence of liver abnormalities. On the basis of these study findings, it also appears that in patients with hepatitis C and well-compensated liver disease, these agents can be used in a manner that is comparable to that in patients without chronic liver disease.
These findings are very much supported by a recent liver expert panel recommendation to the National Lipid Association.[4] This panel that (1) asymptomatic increases in aminotransferases represent a class effect associated with statin use and do not necessarily indicate liver dysfunction; (2) fulminant liver disease associated with statins is very rare; (3) routine monitoring of liver biochemistries is not warranted for patients receiving statin therapy; (4) well-compensated chronic liver disease and Child's A cirrhosis are not contraindications to statin use; and (5) statins can be used in patients with nonalcoholic fatty liver disease and steatohepatitis.
Appropriate use of statins in an expanded population of eligible patients should hopefully lead to improvement in the cardiovascular health of appropriately selected at-risk patients. Additionally, these agents may improve the hepatic disease — especially in those patients with hyperlipidemic-related nonalcoholic steatohepatitis.
From: http://www.medscape.com/viewarticle/542993?src=mp
Mike
Well that blows my very narrow based-on-my-own-experience-only theory right out of the water on my own level of tolerance of this treatment being due to being in good health. I would hazard, Jim, that you were much more fit than me going into treatment just based on bits and pieces of information. So .. that shuts me right up on THAT one.
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Fret, as FlGuy said, you may not see "Hepatologist" as they are (someone correct me if I'm wrong please!) a gastroenterologist who specializes in Hep C. You find them in the larger teaching hospitals more like it .. and you may have to do some digging and ask the GI's that you find how much experience they have with treating Hep C and review their treatment approaches with them...see how willing they are to work with you and answer your questions and how open they are. It's important to find a doctor that you're comfortable with as much as you're able.
Don't be too hard on the family physicians. Hep C is not their specialty. The ones who don't acknowledge that are the ones who bug me .. my own family doc knew that it was out of his sphere and even though my liver enzymes were normal, he had the foresight to pass me on to a specialist instead of just telling me to come back for tests every so often.
I don't have anything more to offer here, fret...only good wishes. I'll leave you to the more experienced people who are giving you great advice and insight. I just wanted to encourage you, that's about all I've got here. :) You'll figure it out cause you're asking all the right questions, growing leaps and bounds in knowledge and you will figure it out like we've all had to do. Good luck, my friend.
Trish
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As I mentioned in my previous post, your doc probably isn't up on current data. Dont waste time wondering "why" and spend it finding a liver specialist who will steer you straight.
------------------
FL/Trish
Yes, did "dabble" in high dose ribavirin (HDR) early-on in treatment, but that reasonably only accounted for a small part of my sfx early on during treatment, and I'm sure had nothing at all to do with any post treatment issues.
The broader question posed by Trish is whether pre-treatment physical ncondition can significantly affect side effects on treatment.
While I'm sure its better to be fit than not fit entering treatment, my feeling is that different individuals react differently to these drugs often in a significant way. I'm sure there are many fit people who didn''t do HDR who also tanked during tx. One who comes to mind -- forgot her name -- is a lady who did motocross racing/stunts for a living and had a horrendous time with sfx. And then I'm sure there were a number of couch potatoes that didn't have such a rough time.
-- Jim
"Patients who have chronic hepatitis C with advanced fibrosis have twice the risk of developing liver cancer if they also have diabetes. These findings are published in the June issue of Hepatology, a journal published by John Wiley & Sons on behalf of the American Association for the Study of Liver Diseases (AASLD). The article is also available online at Wiley Interscience (http://www.interscience.wiley.com/)."
http://www.medicalnewstoday.com/articles/109348.php
Mike
Well.. not just fit but overall health in general. I had no.. and I mean no...other health issues. So I didn't have to deal with how treatment would impact any of those issues. Please understand I get how very fortunate I am. But anyway...I have wondered if the combination of a certain level.. not high level .. of fitness along with the genes I've been blessed with had anything to do with how it's going for me. And I'm thinking it's just the luck of the draw. It's not easy but it's been manageable so far and I just keep rolling with it and hope to all the way to Week 48.
I don't want to sidetrack fret's thread and make it about me. I just wanted to clarify what my own personal conjecturing has been. That's it, that's all.
Trish
When I realised how bad my liver damage was, I txed... and relapsed.
I have no regrets about doing tx. I would always wonder, 'what if', if I hadn't.
As Meki pointed out, it does mess with your brain. You need a good doc to monitor you and you need to listen to your body/self~ hard to do when you are affected by drugs, oops, I mean meds.
best of luck, OH
Your a grade1 stage1 right?
Did you risk to get resistant to protease inhibitors by signing up to that studie your in,
I know nobody could risk not to get riba in future studies, but what about getting to little peg, do you know what meds youve got by now?
The reason I´m asking is that fret seems to be so sure to get in a studie is he knowing the risks? did you?
ca
I believe Jim's on target - your Dr might be (slightly) out of date. Until last year, FDA required package insert for all statins to include "active liver disease" as a contra-indication. This restriction was recently removed for certain statins
"Researchers have investigated the effect of statins on hepatitis C for several years, but the treatment is not approved by FDA. In fact, use of many statins is contraindicated in patients with active liver disease. However, FDA recently removed this contraindication from the package inserts of 3 statin agents"
from
http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=442867
the link will probably be expunged by the censorship screen, but you should be able to find the exact FDA regulatory changes on the FDA site.
Also, Alinia is not a statin, it's prescribed for control of diarrhea caused by parasitic infection.
Overall, there's not much choice with respect to the ifn, and you won't know how much damage it's done, if any, until it's too late. In terms of planning the best you can do is to avoid taking more than you need (ie if you can put together a combo that decreases your ifn exposure without reducing your odds of svr you're probably better off).
I believe Jim's on target - your Dr might be (slightly) out of date.
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Yeah, about four years "slightly" as are the FDA inserts :)
Here is a thread that was going not so long ago here.. someone asked about fluvastatin, a cholesterol-lowering drug, that he'd heard it lowers viral load. The subsequent discussion includes links to studies that have shown current thinking on statins for persons with liver damage and HCV, that they actually not only help reduce viral load but are even being considered as a substitute for ribavirin pending further study.
Here's the link to the medhelp thread:
http://www.medhelp.org/posts/show/503942
As long as they keep monitoring you, the evidence seems to indicate that not only can you have statins AND do treatment but that it will likely HELP you while on treatment towards having a better outcome. Always that little roll of the dice you take that says if the adverse effects come, you have to stop. But the evidence seems to indicate it's potentially worth a throw or two of those dice...however, once again, that's a very individual thing.
Trish
http://www.ncbi.nlm.nih.gov/pubmed/17542767
trish : so how about those lymphocytes?
Here are some links to articles about statins and fluvastatin in particular which has been shown to be the most effective on viral load:
http://www.hepatitis-central.com/mt/archives/2008/04/fluvastatin_low.html
http://www.hivandhepatitis.com/hep_c/news/2008/042208_a.html
http://www.hivandhepatitis.com/hep_c/news/2006/071106_a.html
Hopefully those links don't get wiped out.
Trish
I'm laying on my couch 24/7 but now "low" enough for procrit...
let them try walking a block in my shoes!!
you've gotten plenty of good advice...
let me just add, look you can lower cholesterol without stantins, oatmeal, fish oils, omega oils, and of course PPC which you've heard of in here..all safer routes than statins...
that's one..
Two: my observation, not an across the board generality but perhaps noteworthy is that permanent post treatment symptoms seem to go more or less hand in hand with the age and general health of the individual to begin with....notable exceptions might be those using other substances which can either add or detract from that.
Meaning, the older the person, the more likely they could develop immune responses, or "metabolic syndromes" because of the cumulative weakness in health.
Now today I was reading on the fatique hormone connection in HCV...and started a thread on it.
Bottom line is, my perspective, the weaker the endocrine and lymphatic system the more risk of sides. I take HGH for my pituitary...and this gets me to "normal" levels so I can repair tissue. It has not allieved all side effects...as I am only taking a therapeutic dose.
One individual who has had a great many side effects is also a male taking estrogen.
the thread I started today may give some insight as to why the overuse or abuse of any single hormone, or a male put on a hormone that imbalances his whole endocrine system, even if done for preventative reason, say to prevent protate cancer, still could lead to more than the average number of permanent post tx side effects.
The question in the end is how much is the HCV tx...how much is all the rest.
Lastly, there is a certain segment of HCV people who persist in using marijuana, drinking, or using other drugs known to harm the liver and health in general. While that certainly does not explain why everyone that has had a bad time has had it...(so PLEASE people don't yell at me peple...no assumptions about anyone in particular here)....but one must consider the idea that all those things factor into ones final results.
Judging by what one clinician told me, and the research also backs this up, the continual usage of any such substances greatly effects both liver outcome and general health, and the recovery of a healthy immune system as well...and these are not really items still up for debate in medical circles.
what is unfortunate is that not enough is known about the pharmacalogical role that many meds play in all this, but what little I've researched suggests we had all best tread cautiously into that realm. I've already discovered 4 Rx's that I was put on were toxic...
One must also note, to a failing liver many substances thought to be safe no longer are.
I think you'll do really well on tx , and yes it's tough..but try not to worry about it too much....you've seen the good bad and the ugly in here...so you will be an informed patient at least....and hopefully remain a positive one. Just remember I said that you have your first tx induced cry....and come tell mama...we'll be here.
There are months on tx I've thought were from hell...and other months I've just gotten used to the hell...or something...who knows....at any rate....you take it one day, or one hour at a time, and keep your goal in mind...and you'll be fine!
mb
jim: sometimes I suspect we expect the impossible from our drs/nurses. As I was lying on the gurney in the pre-op parking area waiting to be wheeled into the op room, I had two guys in their 80s on either side of me. Both talked in a slow, hoarse whisper, but knew *exactly* what they were talking about ( one was in for his 20th cardiac op ). The nurses, though competent, helpful and friendly, didn't seem to really hear a word.
Oh, that sounds like being in jail a bit, I think I can hang with that thought, as long as it's just a thought, as I'm too vain to let the youngsters call me POPS. LOL Then again, it sounds like detoxing off of opiates? Ouch!! Maybe I can go through tx thinking like it's a sentence to some cruel unusual tx. LOL Well like you said "Just remember I said that you have your first tx induced cry....and come tell mama...we'll be here". Thank you much for that reminder. Seriously though, I hope whatever happens I can at least remain professional at work, if I get to continue working. Also, I hope I don't have to think of it like I'm serving a sentence, but I will do what I have to do. It's amazing, and I've seen it happen right here on this forum. It's amazing what people adapt themselves to, when you have no choice. I hope everyone is doing as well as can be expected, or I hope everyone on tx is not going through too many sx's and life is now on cruise control. take care
vou can me pops, call me grams, just don't call me dead meat quite yet!!!
or something to that effect...
they say that Pat Garretts got your number..or in this case HCV..so sleep with one eye open as bobby once sang.
I hope you can work too....for guys it's a little easier...maybe because you have more liver and muscle to deal with all the drugs....just remember when in doubt....go pharmaceutical not postal. (and for gosh sakes don't go to no accupucturist....sheesh, have we learned nothing about how this is spread people)
My GP gave me ativan for anxiety and has tried to discourage me from daily use....I agree....but try dealing with a hyperactive anybody for a few hours while on Riba...and you soon discover that a case of nerves brewed in tornado alley ain't leaving you no Kansas to hang onto.....as long as you know that going in, you'll be smart enough to cry uncle if need be....half the battle is knowing when to get to the storm celler.....
Marcia
meki and Jim and others have posted many of my thoughts and done better then I could.
Before treatment my health was near perfect. Probably living with C for 20 years. Very little liver damage and a 1b with very low viral count. I was sure the liver docs would say to come back in a year and see where my liver was but NO they scared me into treatment. Three+ years off treatment and UND but now so bad off from sides that am now on SSI disability with no foreseeable end to the hell.
To your basic question... I dont believe there is any indication as to how someone will end up. I do remember my wonderful liver nurse remarked that I was one of two patients she saw that "couldnt wait to get off treatment".
For me I didnt want to treat and given the choice to I would reverse time and NOT treat. I also believe that once you start to treat there is no going back...
Again, good luck.
frank
marcia, you know I love you right????
OK,
well I used to work for alternative doctors. the operative word here is Used to. Oh the horror stories.
Maybe you are an exception, maybe your needle guy was one..... and I'm sure there are others who take precautions.
However there is SO MUCH ignorance out there that I'm willing to make that blanket statement on ovservations alone...and then there is the science of whats being done and why...and whether one can by pressure achieve the same goal without punctures must be considered. The trouble is lots of docs really don't gets how little blood may spread this disease. Some countries are still reusing needles to the DAY without sterilizing them...what does this tell us about knowledge, wisdom, or laziness in general.
example: yesterday, a lab tech drew my blood...and spilled it on the arm of the draw chair.....only one drop....... and DID NOT sanitize the chair.
now mind you, these people know half the patients in the clinic have HCV...mind you I told her I had it...mind you I sat there dumbfounded looking at her like...come on..whats wrong with this picture....she never got it..
if you think all accupuncturists have sterile offices think again.
Or, perhaps it helps if we think that every time we puncture ourselves we introduce the potential for infection and blood poisoning a small thing? I don't know...right now I have an infection in my foot from a puncture and bone break...
to an immune compromised person, one on chemo qualifies as such, any and all unnecessary breaking of the skin is to be avoided. You introduce staph to your blood stream. On the surface of the skin it usually remains harmless...in the blood it is far from it.
as I said, from what I saw in working in doc offices, 15 years doing physical therapy...
there isn't one chiropractor, accupunturist, or podiatrist I be caught dead working for.
And, there quite a few medical doctors these days whose office sanitation is equally deplorable..but that's just my opinion. If I go into an exam room, and it's filthy....I'm leaving. If they don't keep their premises clean, how likely are they to keep their instruments sterile is my reasoning here.
this is really NOT funny...but beleive it or not 2 weeks ago I went to a new doc..because I couldn't get in at my regular doc or hospital....so I took a recommendation....and the place was so dirty I took several pics cause I knew my hubby would never beleive me unless I brought proof...the sink, exam table and counter were third world filthy. Beyond belief!!!!!
If you like I'll send them to you....and then tell me what you think has happened to so hamper the mentality of medical sanitation..because I'll be darned if I can figure it out.
In fact...I'll try to post the pics in here so all can see. I don't know if phone pics will really show well in here...but I'll try.
mb