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  

[orphanedhawk]

  I didn't want to tx. I wanted to do some alternative treatment.
When I realised how bad my liver damage was, I txed... and relapsed.

I have no regrets about doing tx. I would always wonder, 'what if', if I hadn't.

As Meki pointed out, it does mess with your brain. You need a good doc to monitor you and you need to listen to your body/self~ hard to do when you are affected by drugs, oops, I mean meds.

best of luck,                   OH

[Trish77]

"The broader question posed by Trish is whether pre-treatment physical ncondition can significantly affect side effects on treatment."

Well.. not just fit but overall health in general.  I had no.. and I mean no...other health issues.  So I didn't have to deal with how treatment would impact any of those issues.  Please understand I get how very fortunate I am.  But anyway...I have wondered if the combination of a certain level.. not high level .. of fitness along with the genes I've been blessed with had anything to do with how it's going for me.  And I'm thinking it's just the luck of the draw.  It's not easy but it's been manageable so far and I just keep rolling with it and hope to all the way to Week 48.  

I don't want to sidetrack fret's thread and make it about me. I just wanted to clarify what my own personal conjecturing has been.  That's it, that's all.

Trish

[mikesimon]

The grass always looks greener on the other side. But HCV, like treatment, has its own set of possible side effects and we can only speculate where we SVRs would be if we didn't treat when we did. I feel pretty certain that had I not treated successfully when I did my transplanted liver would be cirrhotic by now. A lot of people feel confident predicting the rate of fibrosis progression and that might work for them but I don't buy into it. And then there is always diabetes, Non Hodgkin's lymphoma, HCC and so on to consider.

"Patients who have chronic hepatitis C with advanced fibrosis have twice the risk of developing liver cancer if they also have diabetes. These findings are published in the June issue of Hepatology, a journal published by John Wiley & Sons on behalf of the American Association for the Study of Liver Diseases (AASLD). The article is also available online at Wiley Interscience (http://www.interscience.wiley.com/)."
http://www.medicalnewstoday.com/articles/109348.php

Mike

[jmjm530]

Fret: Why won't my doctor prescribe me statins, something for my cholesterol?
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As I mentioned in my previous post, your doc probably isn't up on current data. Dont waste time wondering "why" and spend it finding a liver specialist who will steer you straight.
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FL/Trish

Yes, did "dabble" in high dose ribavirin (HDR) early-on in treatment, but that reasonably only accounted for a small part of my sfx early on during treatment, and I'm sure had nothing at all to do with any post treatment issues.

The broader question posed by Trish is whether pre-treatment physical ncondition can significantly affect side effects on treatment.

While I'm sure its better to be fit than not fit entering treatment, my feeling is that different individuals react differently to these drugs often in a significant way. I'm sure there are many fit people who didn''t do HDR who also tanked during tx. One who comes to mind -- forgot her name -- is a lady who did motocross racing/stunts for a living and had a horrendous time with sfx. And then I'm sure there were a number of couch potatoes that didn't have such a rough time.

-- Jim

[FlGuy]

Jim will probably add that, in addition to being in good condition, that he may have overdone it a wee bit early in this treatment.  Jim dabbled with some higher doses of riba early on that caused him to withhold riba in his early weeks and to deal with the ramifications of said aggressive riba'ing.  That may have shaded some ensuing weeks for him.  Jim can fill you in.

[Trish77]

Jim:  "I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome. "  

Well that blows my very narrow based-on-my-own-experience-only theory right out of the water on my own level of tolerance of this treatment being due to being in good health. I would hazard, Jim, that you were much more fit than me going into treatment just based on bits and pieces of information.  So .. that shuts me right up on THAT one.
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Fret, as FlGuy said, you may not see "Hepatologist" as they are (someone correct me if I'm wrong please!) a gastroenterologist who specializes in Hep C.  You find them in the larger teaching hospitals more like it .. and you may have to do some digging and ask the GI's that you find how much experience they have with treating Hep C and review their treatment approaches with them...see how willing they are to work with you and answer your questions and how open they are.  It's important to find a doctor that you're comfortable with as much as you're able.

Don't be too hard on the family physicians.  Hep C is not their specialty.  The ones who don't acknowledge that are the ones who bug me .. my own family doc knew that it was out of his sphere and even though my liver enzymes were normal, he had the foresight to pass me on to a specialist instead of just telling me to come back for tests every so often.  

I don't have anything more to offer here, fret...only good wishes.  I'll leave you to the more experienced people who are giving you great advice and insight.   I just wanted to encourage you, that's about all I've got here. :)  You'll figure it out cause you're asking all the right questions, growing leaps and bounds in knowledge and you will figure it out like we've all had to do.  Good luck, my friend.

Trish