Should I tx now or wait ?(video presentation )

[Myown]

Hi guys.
I posted this in a thread on the other side to someone who decided not to continue tx. Of course its their choice and I would never disagree with what someone chooses, but I think this video may help some to decide whats best for them (as far as newbies)Dr.D does the presentation.

Its worth watching even for those who are already tx.


http://www.liverfoundation.org/education/webcasts/


See ya.

[Myown]

Hey Jim,
I checked out the threads.
I know the post tx sx have to be a nighmare to anyone going through them, but I only wish more folks that were here on forum would check back in and let us know how they are doing.

I guess there will always be some that suffer from post sx, but I wonder what the actual percentage is. Maybe not enough people are reporting these post sx to their doctors or maybe there aren't a whole lot of people suffering from them?

Either way, no matter how small or big the percentage of people that are suffering, I hope doctors start to look into this. Afterall we go into tx hoping QOL will improve and some find just the opposite when tx is finished.

Hope you're doing good these days. I'm still waitng on labs from the first week of March. I'll email if I don't hear anything by the beginning of next week.

see ya later.

[Myown]

I guess that is a hard call. So many people have allergies that don't have hep, but yet those of us that do have hep, it really wouldn't surprise me if some of the allergies could be from hvaing the virus.

[nick m]

What shocked me when i had my pre-treatment brief was the almost homeopathic size of the interferon effective dose - 180 millionths of a gramme. The last time i heard a figure like that it was as a conservative dose of LSD (Owsley's were 250 to 500 mikes). My conclusion from this was that Interferon is an extremely powerful substance if such a miniscule amount can produce such a radical reaction. So what would be the normal amounts of naturally occurring interferon in the body or does it only manifest when the system is under attack? I guess this is almost rhetorical so don't feel obliged to answer but no-one else ever seems to remark on this aspect of the drug. When doses are reduced a difference of 45 mikes can produce a profound change in the body's chemistry. frightening and indicative of the potential for long-term disruptions in the balance of the organism.
best nick m

[jmjm530]

Let's use pre-existing psoriasis as an example. Psoriasis is known to flare under interferon. Mine started flaring as early as week 6 but was quite evident by around week 14. That's a good measure as any as to how long it takes before immune problems begin. Then add to that another year of treatment and you can get an idea what might happen. As to sides starting right away, keep in mind that both interferon and ribavirin have other side effects besides what they do to the immune system. That's what some of us experience from week 1. Ribavirin does other things but the way I see it is that the interferon is the more dangerous of the two drugs long term.

-- Jim

[wyntre9]

Here's my two cents;

I've had allergies, an immuno suppression disease, and asthma for two decades.
I've had surgery, been scoped, had steroidal injections of the turinates, been on antihistamines, antibiotics, theophylline, prednisone, nasal sprays, had nasal irrigation, cat scans, MRI's, immunotherapy everything in the book.

Basically I've been feeling like cr** all this time.

A couple of years ago it got significantly worse.  I was diagnosed with sciatica among other things.  (another immune suppression disorder).

This past September, when I went back to work after summer vacation, i found I literally had to go to bed (and sleep) by 8pm, the latest, just to get up the next day.

I accepted it as my health issue, idiosyncracy, and told myself, well, I guess that's what I have to do.  I need my paycheck!

But when hep c was first suggested late August, and then confirmed through a half dozen blood tests and then endoscopy and biopsy in early December, I felt like I had at least a PARTIAL explanation for the problems I've had all these years.

I now wonder if the onset of allergies and sinus infections didn't coincide with the onset of hep-c.

Of course, I'll never know for sure.

But it seems like there could be a connection.

What do ya think?

[Myown]

Many of the problems cited are no doubt caused by an altered immune/metabolic system from the interferon. By eliminating interferon from the mix we start to attack the virus directly as opposed to amping up the immune system. A crude analogy is to put someone in a burning fire to rid them or lice. Yes, the lice are gone but so is their skin. The newer drugs leave the immune system alone but target the virus.
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Thanks for your answer. Everything makes sense in what you said, but I still will always wonder if its really interferon that is the MAIN problem.

The thing that I am still confused about is the people who seem to have bad sx seem to experience them from the very start of tx. If the interferon was definitely the problem I wonder if sx would be seen so early on? The only reason I question this is because the interferon is the only thing in the mix that our body is used to, so that would lead me assume it wouldn't be the bad guy  and maybe its the riba or the helper drugs, possibly combining drugs that shouldn't be combined?

Thanks for the threads to read over. I am off the computer after I post this. So I will read them next week. thanks again

[Myown]

test

[jmjm530]

Yes, the body manufacturers its own interferon, but the high doses we take, over long periods of time, alter -- perhaps permanently with some of us -- the immune system/response, resulting in all sorts of immune/metabolic issues.

Just read any of DoubleDoses (DD) recent posts for a good overview as he explains it better than I can. You'll find some of his posts in the threads I list below which are post treatment experiences from folks here.

Many of the  problems cited are no doubt caused by an altered immune/metabolic system from the interferon.  By eliminating interferon from the mix we start to attack the virus directly as opposed to amping up the immune system. A crude analogy is to put someone in a burning fire to rid them or lice. Yes, the lice are gone but so is their skin. The newer drugs leave the immune system alone but target the virus.

Another crude analogy is trying to drive a small nail into a fine wood desk with a sledghammer. Interferon is the sledge hammer, the newer drugs are a small hammer that hopefully will do the same job with less collateral damage.

If I knew or fully understood the ramifications of all the interferon I put myself through in 54 weeks, I might even have balked treating as a stage 3. At least I would have had a more recent biopsy to see if things hadn't progressed.

Combo treatment now is an archaic treatment non-specific to Hep C. The interferon boosts the entire immune system instead of attacking the virus directly and they don't even know exactly what the ribavirin does.

The newer drugs on the other hand are designed to target the real enemy -- HCV, not make the entire body the enemy. Right now, they still need the interferon until they can solve the riddle of just the right mix of more specific drugs to achieve SVR.

Does this sound like a rant against interferon from someone who was burned by this drug for 54 weeks.LOL. Well, you asked me, and I suppose you knew where the answer was going. Do take the time to read these links before posting something like "should I extend treatment to make sure the virus is really gone" :) Be well.

Post treatment issues, many no doubt caused by interferon.

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html

[Myown]

Why is it that the doctors are looking to take interferon out of the mix? Is it because that is what is looked at as what causes most of the sx? Because when I hear a doctor or even a member say 'maybe interferon won't be in the mix in a few years,' I always wonder what is the reason for wanting to take out the interferon.

I can understand those with AIH, but other than that, our bodies make interferon so this would seem the least harmful to us? But of course 'if 'the interferon is what causes the severe sx in most people I can understand the reason for the doctors wanting to have meds minus the interferon.

For someone such as myself who doesn't feel the physical problems brought on by meds (mental is another story though lol) I would think the interferon would be the least harmful compared to riba?

[Forseegood]

All I know is my symptoms are not all menopause (though some can be a real exaggerated menopause since the liver works with the hormones) I get flare ups, thankfully, not too often, where I get feverish feelings (not hotflashes, I know what those are) and a host of othr symptoms that are related to hepatitis  - an all over sick feeling and extreme tention, loss of appetitie, weakness, profound fatigue where I can't even do the simplist things, these last for a month or so, then go away for months and months, it's not the flu, I know what that is too...along with these symptoms comes liver pain and bloating, etc...and dark circles under my eyes and paleness...

I never got those aches and pains and arthritis stuff...

I feel like I'm sick with the flu, but I'm not sick with the flu, it's difficult to explain, but it's hep and I know many others with relatively low liver damage that have these same symptoms, fromt the virus mostly maybe...some people only get them in flare-ups like me,

others have low level symptoms like these all the time and they have relatively low biopsy scores...my doc said it's my immune response trying to get rid of the virus...maybe people like me are better off because at least our immune systems are trying like h@ll to fight off the virus...and when I get these flare-ups, I take my regimen and it helps with the symptoms, and maybe even keep them at bay...I realize not every hep c patient manifests thier disease in flare-ups like me...once again, this disease is all over the place...

Perhaps what Dr. D wanted to do with this video is talk people who are waiting--- into getting tested and treating...and many of those people don't have these symptoms yet, or may never...and he wanted to emphasize to *them* that just because youre not having symptoms, doesn't mean your not sick with the disease, newcomers per se, that don't know a lot about the disease...

I don't think saying that part of the presentation is aimed at people like me...what's aimed at people like me in the presentation is why watch and wait? and all the reasons to treat now as opposed to waiting....

[jmjm530]

Let me just say this. Even if these symptons are related to your liver, don't expect treatment -- even successful treatment -- to make them go away. Some do report feeling better but it appears a greater number report feeling worse after SVR. It can be just trading one devil for another, so sometimes better to go with the devil you know.  

[Forseegood]

I know what youre saying, but there are too many tip-offs, like these symptoms only come when my liver starts to really hurt, inflammation hurt, and when I've gotten my alts taken during one of these flare-ups, they were much higher, when the flare up was gone, they settled back down again...also they come in this whole phalanx of other things happening, profound fatigue, even all over hives once, with those whatever you call things on the skin that are related to hep c, liver pain, these symptoms all manifest at the same time, then all go at the same time...

they all go except for the fatigue, which becomes much more mild when the rest of the things go, it's not profound fatigue anymore like within the flare-up...

Also during thse flare-ups I look scary sick, pale with the darkest circles and a host of other things that are too gross to talk about, severe diarrhea, and that's the only time I don't feel like eating at all, then it just all goes away at the same time and I'm normal again...

if it was just fibromyalgia, it wouldn't present like this with liver pain, and I don't have achey muscles and joints...my glands all test out okay...

I've talked to other people and read on hep c medical sites (even on Janis) that some people manifest this way, in flare-ups, I've been tested for just about everything else under the sun and they've come up with nada...the only disease I have is hep c...and of course menopause, and I've been to the best menopause sites and talked to obgyns up the ying yang, and menopause doesn't do all THAT stuff..thank god...though I do think the hep is making the menopause worse and visa versa....doc says of course many hep c patients are going to feel profound fatigue, or less fatigue, there is a chronic inflammation in the body...

though I'll say one benefit, since Ive been getting these flare-up and become symtomatic with hep, I haven't had one cold, one case of the flu, nothing like that but a mild spring allergy...and I'm with this kid all the time and she's sick a lot...I used to get flu or a cold once a year or so, but now nothing like that for years...doc says it's because my immune system is on full speed trying to rid the virus...I remember reading a few members who reported the same thing, that once they became symptomatic with hep, they didnt get any colds anymore...strange...

[jmjm530]

Take the "jm" challenge. LOL. Go to another MH, or other health-oriented site, and without mentioning Hep C, your liver or anything about your medical history -- post your exact symptons on any "chronic fatigue syndrone", "menopause", "thyroid", "Nutritional"  or similar such groups, and I guarantee you'll got a whole bunch of "me-too's" from folks that don't have Hep C. I've heard the compaints you describe from many of my friends who don't have Hep C. They're quite common with women in your age group. Does that mean they definitely aren't related to Hep C? Of course not, but it also doesn't mean they are.

-- Jim

[Forseegood]

I see your point, then, the other side to it is, if I'm not feeling up to par now, maybe I'll just go for another year even feeling worse, but that will be the end of it, for the most part...though my expectations are just that, expectations and I know it...could go worse for me...

But it's that *possiblity* of maybe feeling better, or at the least ridding myself of the virus (big plus)....without a lot of improvement on symptoms...

Even failing that, maybe take my liver back to stage 1 and buy myself a few years, there have been people here who didn't even SVR but they ended up feeling better (yeah, and some worse) and taking themselves back a tic on their histology...

like it says in that classic movie of the decade...Napoleon Dynamite..."Might as well do somethin while I'm doin nothin":)) This whole thing as it stands is one big giant **** shoot as I see it, and I guess I'm just ready to roll the dice (cough cough, did I just say that? Ha ha)...I'm doing a lot of tests now then I see the Hepatologist on April 23 to talk over all these options...thanks for you concern for me and everyone else...you do a lot here....

But you know I'm glad I waited as long as I did, cause they know a lot more now then they did back then...plus I've been able to save some money, and get some things in order, etc...

[Lilla]

so funny -- I was talking about the Adams Family the other day and Pugsly.  Yes, when I was a kid, we were outside doing whatever, and when you live in Florida, way back when --- let me just say it was HOT, and no A/C in our house.

I watched this video as well and the scientific stuff in beginning -- well, I don't know what was what, but balance of video very good.  I was told that I have moderate fibrosis, but this was with blood test Fibrospect II, which now I've been told has room for error. I don't want to gamble at age 55.    

I had dinner with an old friend last nite who I had not seen since Nov. 06. I started tx Feb. 5 of '07.  I had a great compliment as she told me "with all the high powered meds you're taking, you'd never know it -- you look great -- better than ever really".   WOW, that was an eye opener.    My diet has definitely improved.

[Myown]

Yes I guess as a kid in Florida with the heat, no one was chubby like Pugsly.I like Florida but the summers I wouldn't be able to handle or at least I think I wouldn't be able to handle.

Glad you watched the video. It helps us all to have it broken down as to what hep is all about. Plus anyone around you who knows you have it, you can share this info with by having them watch. That will hopefully have them think about getting the test themselves when they see ALL need to be tested not just IV drug users.

Thats good that you don't look like you're sick and that you look good. I'm glad no one has noticed with me either and those that haven't seen me in a while give the "oh ya look good, what are ya doing blah blah blah"

I feel like saying "oh its the poison in my system coupled with the virus that has been munching on my liver for so many years, thank you." Iol

Tonite is my half way point already. I have a feeling down the road I may come out of the closet with having the virus. Maybe after the stigma is dropped. Lately I really feel though that it is our job to really have major discussions with our PCP's about understanding more about hep and talking to their patients about it. I feel so strongly about that at this point. Getting to the PCP's and shaking them is what will bring public awareness. People don't routinely go to hepatologists, so the hep doctors cannot get the word out to the public. We have to be the activisists even if we are closet with the public, we should use the primary doctor as our individual spokesperson.

see ya later. nice talking to you.

[dperry10]

I tried to watch the video yesterday when you first posted it, but it took so long to load that I forgot about it and closed the window.. LOL  Brain fog . I will see if it will load this morning and watch it.    As it may help me to get thru this feeling of why am I bothering this time around.

[Lilla]

I totally agree with you on the testing bit.  I think EVERYONE should have a HCV antibody test done with routine blood work.  Especially after hearing that your AST/ALT levels can be normal and still have this virus.  Mine were normal for past years. After hearing this doctor say in the video that levels should be around 19, 20 versus the higher end of 35, 40 (which is still normal).  When I was diagnosed, I had my husband go for an antibody HepC test immediately, just to rule it out. Thankfully, it was ruled out. Insurance should pick this up, but if it doesn't, the price is still worth it to actually catch it or rule it out.  Not knowing really how in the world I got this, I'm very leary now about my dentist, nail salons, anywhere that there's a possibility of blood contamination. I ask "you do sterilize, and I mean stearlize??"    And, last ---- Summers in Florida are the absolute pitts, but I'll take them over snow.   Now, if there was no a/c that may be a diff story.  Right now, SW Florida coastline weather is absolute paradise.  Not much humidity YET.

[Myown]

Yes the video will DEFINITLEY get rid of the feeling of why you are tx, so I hope you are able to watch it. If that is the answer you are looking for as far as 'why am I tx," you will feel encouraged greatly that you HAVE made the correct decision.

see ya

[dperry10]

Its like its buffering still , instead of fully loading and playing , may have to go try on Mikes computer.. he seems to be connected to someone elses network, as his flies compared to mine.  But he does have a brand new computer .. LOL

[mikesimon]

Aging is one reason to treat and one argument against waiting. Of course, if everyone lived a perfect life that might mitigate or prevent the negative predictors that often coincide with aging - obesity, diabetes, insulin resistance, fatty liver, fibrosis prgression etc. But, most of us don't live a perfect life so aging has to be thrown into the equation. Mike

[Myown]

oh,,hope you get to see it. Maybe Mikes computer. I did have a problem the 2nd time I watched it, but now it works.

[jmjm530]

I got about fifteen minutes into it and it started stalling again, so gave up for now. Reminds me a bit of one of the debates over at "Projects In Knowledge" on treating now versus waiting. Only problem is that Dr. D's presentation appears to be only one side of the debate. Of interest, and where I agree, are the reason he gives for treatment -- basically HCC (liver cancer) and Cirrhosis (decompensation) leading to death. No where did he mention in the part I saw, so the so-called "extrahepatatic symptons" many talk about here. In fact, he went out of his way to say that Hep C is mostly asymptomatic until "it's too late". Like I say, I agree with his reasons for treating but just think that someone with little or no liver damage has time to wait before "its too late" it they monitor their liver in a judicious fashion and I'm sure Dr. D. would be the first to agree in an office setting that this is a reasonable option, even though it might not be his first personal choice. He also threw out 2015 as a possible date when interferon may not be part of the mix. That's only eight years away and many of us indeed could wait that long if monitoring shows no progression in liver damage.  

-- Jim

[Myown]

No where did he mention in the part I saw, so the so-called "extrahepatatic symptons" many talk about here. In fact, he went out of his way to say that Hep C is mostly asymptomatic until "it's too late".
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foresee brought that out also. I will have to watch it again. I think he said many people don't know they have hep until it has caused damage. (or something to that affect).

Though extraheptatic should be mentioned, I think that if there was an emphasis on having 'signs' of hep, many people might say 'oh I don't have that, no need to get tested' because many are asymptomatic.  

Maybe extraheptatic symptoms will be covered down the road in another video.  But when you think about it there are probably many people that 'think' they have arthritis and its really hep and not arthritis. Thats scary.