To treat or not to treat? That is not the question.

[fretboard]

I've been a member of this forum for a few months now and what I have learned is all good and I couldn't have learned it from anywhere else.  As far as HepC goes, this is the only forum of which I participate in, most of the posts on this site are pro-treatment and I think that's what initially attracted me to this forum.  Even though it's a pro-tx forum there are some posters who say to treat, however wait until you are having some symptoms.  I wish I had their exact words, but it's really not that important as I think it's obvious.  I am waiting for a clinical trial but I'm having to wait as I have mitigating circumstances concerning prescription meds, so I will be seeing my GI in early July and getting my bloods and an ultrasound done, minimum.  I am also pro-treatment, with all these issues associated with the HepC tx, I am geno 1, so it seems like the genotype with the extra aggressive tx, if there is such a thing.  HepC is such an enigma of a virus and tx often affects, teeth, skin, nerve damage, arthritis, fibro, riba rash, anger the list goes on and I don't want to continue about the bad things that may or may not happen to anyone if they go through tx.  No doubt that HepC is a tenacious bugger and the tx sometimes very difficult, but dang it seems even worse for geno 1's being the longest to tx.  Here's my question, If you choose treatment, is there any indicators that can tell you in advance to get off of treatment as it may cause you a myriad of other ailments and/ or permanent disabilities?  I've read of some heppers who have gone through tx and a couple who even wish they wouldn't have, that's why I ask this question.  I guess it really goes out to the ppl who have had major complications with their tx and have even gotten worse as a result of tx, but of course anyone with an opinion can answer.  Be kind as I'm just looking for an answer, I don't care how good the doctor is he can't feel what you're feeling during tx so my feeling is you really have to stay focused and don't just think your doctor is some God as some of them think they are, they're only human.  I don't know, that's why I'm asking.  I want to have a clue prior to treating as I feel that if I go through anything adverse, I would get off of treatment, but at the same time I don't want to be overly cautious.  God Bless  

[meki]

Holy Toledo that was long. I'm so very sorry --- hope you had a gigantic cup of coffee before you started that one. LMAO!

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!)

[meki]

"Here's my question, If you choose treatment, is there any indicators that can tell you in advance to get off of treatment as it may cause you a myriad of other ailments and/ or permanent disabilities? "


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

[Trish77]

"Even though it's a pro-tx forum there are some posters who say to treat, however wait until you are having some symptoms."

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

[Bobby1952]

   Sorry I answered the wrong post.

[Bobby1952]

   What is the question ????