after effects of combination therapy

[jackiedee]

Why is there no information about possible health problems after the 12 month combination treatment before you agree to treatment[ ie hyperthyroidism, skin irritations to name a few]

[dranurag]

do you mean you would not have treated?

[Frank J. Perrotta]

Good luck jackiedee,

I dont think the OZ system is any worse than anywhere else. We have to keep reminding ourselves that they are still practicing on us.

Good luck with it all, I couldnt imagine messing with these issues and having two children to take care of.

And you are right about this forum and the people on it = the very best... if only I had found it before treating maybe things would have been different.

hugs,
frank

[jackiedee]

I am thoroughly disgusted with the current health system in Oz, but I have no control whatsoever over that. I think that this on-line service I luckily stumbled upon has been more help than the supposed doctors, thanks for all the more in depth information, and support from fellow ex-hepc sufferers!!!
Nygirl and Frank it has been great to here from others that didn't find treatment as easy as the majority that I've been told about by both doctors, and on this chat.
With two children and having made a really stupid mistake at a weak moment I am not ashamed to admit infection was my fault, I do wish I'd been told that although the virus could be cleared that there was a potential for the problems I am now facing.

[nygirl7]

"I did the 12 month treatment and although i'm "CURED" supposedly, I now have a hyperthyriod, diabetes and constant skin irritations that are driving me up the wall"-----------

I did 72 weeks and have the same exact things as you (except the diabetes and I am left hypothyroid taking syntrhoid forever).  But think of it this way.........we are 'cured' of the disease that would kill us.

-------
"ROFLMAO! --- And that is a good thing. I certainly did NOT want to die of liver cancer/ESLD" --------------

Unlike what the good docs tell us it has recently been shown that that is just not true at all.  don't remember the gory details but when I was going to treat the doc said it would guarantee pretty well that there would be no liver cancer.  The sad fact is that is not necessarily true whatsoever.

[Frank J. Perrotta]

@Jim, Thanks for that and hope you are well yourself. I got in a tiny house all to myself which has helped my mental health enormously. 45 & living with elderly parents was taking its toll. My little house is sooooo beautiful and peaceful.

I agree with you about many feeling worse or the same after the cure. This has also been confirmed by the liver nurses but the big shot docs wont admit it. THAT IS WHAT REALLY BUGS ME. These Liver Gurus MUST know that there are a lot of patients suffering long term side effects and dont give a Darn??? I have gotten one to admit on the phone to my GP that the cure is often worse than the disease.

@Meki, I also totally agree with you and others. If my liver was screaming for help I would have listened = no choice but to listen I guess... but I was healthily living with this issue for 20 years. Biopsy showed a healthy liver, viral load was super low, etc etc. I was smiling as I went in for my consult as I was sure the doc was gonna say "Come back in a year and we will see how you are doing." Instead he put the fear of DEATH into me... so what ya gonna do?

Is it worth going to Mayo and put yourself in for two or three days so they can experiment on ya and still come out without any answers?

Currently going thru all the travel time (3hr drive round trip) with up to 6 hour waiting time then having the Liver Guru tell you he has NO idea why anything is going on with you... This takes me three days to recover from. It just gets soooo depressing!

Sorry for the rant.
frank

[Trinity4]

Marbro,
Go find somewhere else to hang out if you are going to ask stupid questions.  I think you are a stalker.

[Marbro]

So treatment can really kill you? Or cause permanent damage that will shorten your life span? I thought this treatment was meant to help extend your life not make it harder.

[dranurag]

My GE said all the side effects are reversible so don't bother just continue tx. Fortunately I did not have any grave side effects. Did require neupogen regularly but could take the tx easily while working. They say if you take 80% of the dose 80% of the times you have 80% chance of SVR (Geno-3). Still hoping for SVR.

[merryBe]

Hr on tapering of treatment drug

http://www.medhelp.org/posts/show/393732

[merryBe]

when your liver is throbbing and you feel on death door...you take about any tx they say gives hope.

no way do the cells get off scott free... 1. boosting the immune system can trigger confusion hence autoimmune rsponse ( your cells attacking you not just the virus)

and 2. Ribavirin interrupts the replication of RNA?DNA...and it does not discriminate if our bodies are any indicator...it will do some cellular damage to more that just the HCV virus....thankfully the body can recover and replace amazing amounts of damaged tissue....the question is can it keep abreast of the tx drugs.......and will it reset itself once the drugs are gone.

since the immune system has hundreds of specifically designed cells that recognize specific mutations most will get through tx and not develop the cancers etc seen when the immune system stops recognizing abberant cells...but most will have difficulty readjusting to the period  directly after tx....chiefly because the INF levels will go very low making the body more vunerable to relaspe and other anomalies.

for more on this go up to health pages,top right dide of this forum page...click on HR FILES and the on tapering off of Interferon...this I think offers a good potential for helping the body reset its internal   immune system clocks.

[Trinity4]

Good post - I agree 100%.  I knew going into this it could cause serious side effects.  But I had to do it because my liver was screaming "I'm dying her you know!!!"  There are no guarantees but at least I won't ask myself "what if I would have treated".   I'm miserable right now and can't see the forest for all the trees but I don't care as long as there's some hope for SVR.  
Trinity

[meki]

OK - having the massive problems I am having (not a lot compared to some - but more than I certainly expected) I have to agree on this factor:

Yes, I was informed that Interferon could kill me. *BAM*! Just like that.

I was also informed that it could have side effects beyond the basic flu feelings, alopecia, and brain fog.

I was also aware --- somewhere in the back of my mind --- that it could cause autoimmune disorders, like thyroid, RA, etc. It says it in VERY small print --- on the website, on the package inserts, and on  the pharmacists sheets --- that it can cause permanent problems.

However --- even knowing that it "could" have those problems... I would have still taken it the FIRST TIME.

I think doctors are completely UNAWARE of the side effects of this treatment - and I think the treatment produces more sides than they want to deal with.

HOWEVER --- STILL --- KNOWING FULL WELL THAT IT COULD CAUSE THESE THINGS --- I TOOK THE TREATMENT --- HOPING THAT IT WOULD NOT HAPPEN TO ME.

I think, that because it was down on the list ---- at the very bottom - that it would not --- could not possibly happen to me...

Not that I ignored it --- but more that I just thought --- well that's only 2% or something like that.

I rolled the dice in my case.

I, unfortunately, appear to have lost the roll.

I think if you are pre-genetically disposed to having a condition ---- this treatment may excaberate it - or make it ten times worse -- and happen earlier in life.

For example --- if everyone in your family has arthritis ---- but they don't get it until 70 or 80 --- if you take this TX at 40 ---- you're going to get it by 41 - and so on with a thousand other things that are happening with "older" people in your family tree.

I took the TX to "cure" HepC.

I beat the HepC...

ROFLMAO! --- And that is a good thing. I certainly did NOT want to die of liver cancer/ESLD.

I think... That with EVERY SINGLE MEDICINE that you take --- you are also taking on the risks that can happen when you take them.

Interferon is no different.

I think the only difference is that we are all in a stage of denial - thinking --- it can't happen to me...

AND --- furthermore - I don't think doctors are aware of the sides... I think they cannot possibly be aware of the side effects if they have not gone through it --- or been with someone who has.

And --- even knowing that Interferon may have caused some serious stuff going on inside of me --- I would still have treated.

I still wanted that chance to kill the Virus inside of me that was destroying my liver.

Sometimes, unfortunately there are after effects...

And that - my friends - is:     Just the way the cookie crumbles.

LOL!

Meki

[jmjm530]

Sorry you're still feeling so bad, but happy to see you posting more on a regular basis these days.  It's wonderful that some feel much better after treatment, but it's important for those making a treatment decision to hear from both sides. From what I've both here -- as well as experienced -- the majority do not feel better after treatment. They either eventually feel about the same or somewhat worse. This doesn't mean people shouldn't treat, as there are a number of reasons to treat such as fibrosis regression, but it does mean people should have their eyes open if their main reason to treat is to get rid of this or that sympton (fatigue for example). I think I read a study that said only 20% of those treating report less fatigue after treatment. This correlates with about what I've seen here and my own experience where my fatigue levels are identical pre and post treatment.

-- Jim

[Frank J. Perrotta]

All my docs told me that the meds and side effects would be out of my body in three or four months.

Three years later I am suffering worse than on treatment. There was no description of the hell I am going thru in any of the inserts... I know. I read them before tx, during tx and multiple times after.

Some of the liver nurses have told me I would recover in six or seven years. I ask them where they are getting this and they are silent???

[dranurag]

there is always an insert in all medicines even tablets which lists all precautions and side effects though it is true you will get scared after you read it but you can't blame the doc or the drug company later.

[jackiedee]

The meds just come with the interferon injections to last you a month and have no piece of paper  I literally picke dup the next month's worth and that was that. I agree that people just blindly follow the words of a doctor. The side-effects I'm talking about are only cropping up twelve months after I finished treatment.

[desrt]

I don't know how your meds come packaged in Australia, but here in the U.S. there has always been a long thin piece of paper with really fine print on it that lists all this stuff and much, much more. Comes with every bottle of riba and every dose of IFN. The fact that most people don't bother to read this and blindly trust their doctors will always be a problem.

[Frank J. Perrotta]

I agree with debnevada. I think many docs cant wrap their minds around the possible harm they are doing to their patients... either that or it is all the big pharma money.

good luck all,
frank

[debnevada]

Yes, I signed an informed consent that told me everything that could happen.   Little did i think that a lot of them would.

i think that if they told folks the whole story, they think no one would treat!!!

of course, when i say "they", i'm not sure who i mean. docs? public health officials?

[jackiedee]

I did the 12 month treatment and although i'm "CURED" supposedly, I now have a hyperthyriod, diabetes and constant skin irritations that are driving me up the wall. None of these were on the information pamphlet i received pre-treatment. Did anyone get told these possible side-effects?

[nygirl7]

I'm not exactly sure what you mean?  Do you mean why don't the doctors mention all these things? My doc did...briefly - honestly I don't think many of them are that aware of them.  Heck, doctors act shocked when we get the anemia and ask for Epogen...unfortunately a lot of them are VERY out of date with the journals.

Mostly everything I learned about this disease came from in here from people who actually have the disease so they have real life experience and have researched the hell out of it all.

Us heppers can be a REALLY obsessive group as a whole.  Which is a good thing mostly because we are VERY educated about our disease.....and the doctors generally after a point don't know nearly as much as we do (unless you are lucky enough to go to one of the big heptologists who are up to date and proactive in their care).  I think most regular GIs just read Geno 1 48 weeks. Geno 2 24 weeks. And that is all that they know.