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  

[susan400]

I've done too many treatments to keep up with and there's probably more in my near future.  Some of them were very difficult, I'm not going to lie about that.  Some of them were not all that bad.  I can tell you that from my own personal experience that the Riba was definitely the biggest problem for the sides for me.  But, physically, all the interferon has affected my white blood cells in that they don't want to get back to normal.  Is that because of the interferon, the Hep C or some other unknown problem???  I have not a clue.  I've had plenty of medical care by two well known research centers, so it's not for lack of expertise.  I had some episodes with the TX side effects me with depression early on, but after awhile, I became able to understand the TX's and their effect on my mood when I was on the TX and was able to handle it fine and I've never been doing the Anti-D thing.  But, everybody is different.  I've learned that when I am having a time where I'm about to quit, I call on my prayer friends and I pray, too and my Lord gets me through it.  My normal life, having nothing to do with the disease and Hep C, has been very hard and I've had to learn how to 'roll w/the punches' as my Dad says.  The normal me rarely cries, maybe something like once a year, & all at once and then, I'm done.  I know that the TX me, might be crying every day, or might be crying every other day...or get mad for no discernable reason and, both my husband and I know that this is the TX. But w/having bridging fibrosis, I feel like I need to keep on actively pursuing whatever becomes available to me until I obtain SVR...or until I'm told by a knowledgeable physician - that's it, no more TX's for you.   Susan

[comeagain]

To be or not to be that is the question!

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

[eureka254]

My husband is currently scheduled to start treatment July 29th, and we had a long meeting with the hepatologist a couple of weeks ago, and one of the discussions was exactly the question you asked.  I wish there WAS a definite answer given, but alas, no.  We were told that there is no "predictor" of what sx will affect whom, but the doc certainly explored concerning "predispositions", if you will.

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

[HARRYBEADS]

  To one 1a'er to another
  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

[Andiamo1]

I entered the Prove 3 trial with all the stats against me.  So far, it looks like it paid off.

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  

[working dog]

i've been reading posts here for a year and a half...i'm geno 1a s1to 2...g 2...vl about 5.5 mil...i am waiting for better tx...but if i had the time and the money for tx i would go ahead and tx...i think if your stressed out too much trying to get tx then maybe wait..i think the stress thing is something to weigh out...and could affect your outcome...i've seen a lot of folks here stressed out over payments and that can't be good...although it also depends on your stage and grade...my sx do bug me...i beleive i got this from my x and she tx 5 years ago and did fine...so if there are different types of geno 1a's and i have the exact same virus as she had then i feel i might have a better chance of making it through tx..good luck....billy