interfuron treatments worth the pain?

[caiti87]

I was recently diagnosed with hep c, weird thing is that for months now my blood work had been showing really high liver enzymes and my doc screened me for hep a,b,and c three times and they ALL came back negative. Finally I was feeling soo sick and in so much pain that they admitted me to the hospital, and did an ultra sound and more blood work, when they got the results they decided to fly me to another hospital in a city two hours away, I was too sick to even be scared. after being there for a day the docs came in and told me that i had hep c and it was in the chronic phase, which is also odd to me since i've read that people have hep c their whole lives and dont suffer any symptoms. Why is mine so aggressive soo early? The doctors advised me to start interfuron and rivabbaren (sp?) as soon as im able, that if I dont I will almost certainly need a transplant or develop caner down the road. I've been reading  and trying to educate myself on this disease as much as possible, but everything I'm reading states that most people dont have many issues with it, not like mine anyway. also i've read that the treatments have terrible side effects, a nurse even compared it to chemo, which i found a little excessive but still sounds awful. So my question is, are starting the treatments immediately really that necessary and important enough that it will save me from having to get a liver transplant an or possibly cancer?? And is it worth the horrible side effects? i cant imagine going through those for up to a year, but if it means saving my life, I'll do it.  

[desrt]

I doubt anyone responding to the OP has ever had to deal with quality/availability of the healthcare in Alpine, Tx. or had to deal with the logistics of driving hours and hours across the desert just to find a semi-competent specialist in Midland-Odessa. Rural healthcare issues aren't a big thing on this forum.

[orphanedhawk]

"I try very hard to have patience and understanding for those who have no understanding or empathy for people who experience chronic pain."

Do you really think none of us have experienced chronic pain? Do you know that Hector has cancer and is on the transplant waiting list and yet, takes the time to post here honestly with true and valuable information?
He is a gem and we are so lucky he takes the time to share with us.

Do you know how many people have asked if hep C treatment was worth doing? We've patiently answered them over and over.
You omitted important information.
The fact you left out your pain and  addiction problem would be a major obstacle in our helping you.

Nobody every judged you for your pain addiction. That is all in your head.
There are things that don't sound quite right in your posts which is what we question.  I have no idea whether it is because you are not understanding your doctors, or not able to communicate clearly about your condition.

So please~ you are not showing empathy or understanding to what the people on this forum may be experiencing with end stage liver disease, complications of cirrhosis, side effects of a difficult treatment and more.

You are not alone and we are more than willing to help so stop attacking us.

As mikesimon wisely says, " there's no pain like MY pain."
And we ALL feel that way!

[pooh55811]

Cait, I would urge you to stick around. Members on this forum can offer a lot of valuable support and advice and information. Many are extremely knowledgeable about HCV and that is very important when one has HCV. So please don't let this one experience color your entire perception of the forum.

I don't know enough about your personal situation to make any judgements and, even if I did know, I would not judge you. Everyone's situation is different and until we have all walked in everyone else's shoes, we have no idea what they are dealing with.

Pain is pain and it is not pleasant. There is an exceptionally wide range of pain levels. Some pain is considerable more severe than other pain.  Some pain is relentless and it can be very debilitating. Long term pain is particularly debilitating. None of us can judge how severe another person's pain is and none of us can judge what type of or how much pain medication another needs.

In addition, we are all different physiologically. Some of us have more endorphins (which are natual pain killers produced within the body) and can breeze through life feeling little pain. Others have very low levels of endorphines and thus do not have the benefit of the higher level of natural pain killers. Those with higher endorphines are thought of as stoic, non-complaining, acceptable, normal, and people tend to judge eveyone else's pain levels by comparing them to people with the high endorphine levels. Those with lower endorphine levels are often judged as being cry baby's and complainers who cannot tolerate even the slightest pain and they also get the short shrift when being medicated for pain because it is thought they should not need so much pain med. After all, some breeze right through the same procedure with little pain. Therefore everyone should be able to do so. This is truly a disservice to those in pain who need pain relief.

I agree with Tekelcat. The term drug abuse implies judgement (regardless of how it is intended). The term drug abuse is no longer acceptable in the medical field and actually has been on its way out for over 2 decades (although it is still used by many). Granted, many in the medical field know next to nothing about pain management or even pain itself. Many in the medical field tend to be exceptionally judgemental and many still use the term drug abuse. However, the preferred term is drug use and that will most likely eventually become standard nomenclature.

I think sometimes people confuse terminology: drug addiction, drug dependence, drug tolerance

Drug tolerance: Drug tolerance is basically the body's ability to adapt to the presence of a drug. Tolerance may be defined as a state of progressively decreased responsiveness to a drug as a result of which a larger dose of the drug is needed to achieve the effect originally obtained by a smaller dose.

Drug dependence: There are two types of drug dependence.

Physical dependence  ... is a condition in which the body has adjusted to the presence of a drug, resulting in clear symptoms of withdrawal when its use stops.

Psychological dependence ... This kind of dependence is characterized by emotional and mental preoccupation with the drug's effects and by a persistent craving for it. The symptoms displayed are not physical symptoms. Craving seems to be the most common withdrawal symptom.
Psychological dependence is usually manifested by compulsive drug-taking, but the frequency and pattern of use can differ considerably from one individual to another.

Drug addicition: The World Health Organization (WHO) has provided the following definition: "A behavioral pattern of drug use, characterized by overwhelming involvement with the use of a drug (compulsive use), the securing of the supply, and a high tendency to relapse after withdrawal. Addiction is viewed as an extreme on a continuum of drug use patterns. It refers, in a quantitative rather an a qualitative sense, to the degree to which drug use pervades the total life activity of the user, and to the range of circumstances in which drug use controls his/her behaviour."

The term addiction cannot be used interchangeably with physical dependence since one can be physically dependent on drugs without being addicted and, in some cases, addicted without being physically dependent.

Many people become physically dependent on a pain killer due to medical reasons or conditions but that does not mean they are psychologically dependent or addicted. If the pain goes away, the person generally stops taking the drug. If they have been on it a long time, they will wean off of it either by themselves or with help.

My mother had severe cripling rheumatoid arthritis for over 25 years and she was in constant pain not only from the arthritic inflammation but also from compressed spinal discs, osteomylitis, and other problems. She was wheelchair bound the last 5 years or so. Along with all of her antiinflammatory drugs for the arthritis, she took Percocet every 4 hours for the pain, although that did not totally relieve the pain (but it helped). She also did not keep increasing her dose but stayed on the same dose for years. Was she physically dependent on Percocet? I am sure she was after taking it for so long. Was she psychologically dependent or addicted to the drug? No, I am 100% sure she was not. If her pain had disappeared she would have stopped taking the drug.

I think it is important that we do recognize there are different reasons why people take painkillers or other drugs. Not eveyone is in the same boat and not everyone on painkillers is an addict.

Just my 2 cents.

Cait, stick around. This is a great forum and people will help you with HCV questions.





  

[willbb]

Let's remember first that helping others is not a waste of time.  That's what MedHelp is for.

------------------------------------

Hi Em....I personally didn't' read that anyone here thought the OP  was wasting anyone's time and I thought the responders went out of their way to answer with excellent advice ...as usual...

JMO..
Will

[nygirl7]

you should be ashamed of yourself sir... you have assumed incorrectly often ."

Hector has nothing for which to be ashamed at all.  He read exactly what we all did and has given you council from his years of experience.

Please dont call Hector an old folk or imply he doesn't understand what is going on.  He is a very, very respected and valuable member of this forum and you have no idea what he is going through.  If you had any idea what he personally is going through..........you'd realize exactly what his post meant and how important it is for you to listen.

If you dont want a transplant or liver cancer perhaps listening to Hector of all people is a good idea..

[nygirl7]

I believe what the members of the forum are trying to suggest is that the excessive use of narcotics could very well be responsible for the elevated liver enzymes.  Whether someone takes narcotics recreationally or two every six hours as prescribed their body still becomes addicted to them, thus they are then needing to take more and more to feel any effect.

The problem is all that tylenol is not good for the liver and this could be the cause further escalating these violent episodes.

Certainly there are PLENTY Of people on this forum who understand chronic pain - for new members to just assume that is not the case is whacko.  Look at Orphan Hawk alone as one example, caiti said that obviously she doesn't understand - well I would think the pain and suffering of living pre and post liver transplant are quite a bit of excessive pain if you as me!!!!!!!!

I've never been on a forum that is more understanding and less judgemental (face it where did a good portion of us get this disease in the first place?).  To assert otherwise is just wrong, especially when brand new posters have no idea who they are speaking of in the first place.

And I dont see one uncaring person on this thread all I see is people stating the obvious - drug addiction and usage is a problem for you with a possible liver condition.  As Willbb said recreational or prescribed or whatever it doesn't really matter one bit.  Cause and effect does.

It is just honest advice from good caring people.