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408795 tn?1324935675

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

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  
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Avatar universal
trish: yay! good news - hopefully you've now sailed past the rockier shoals of cbc fluctuation and will be bored with smooth cruising for the rest of the passage. It'll be curious to see what Roche does with r1626 - clearly there's trouble on the wbc front.

jim:  sometimes I suspect we expect the impossible from our drs/nurses. As I was lying on the gurney  in the pre-op parking area waiting to be wheeled into the op room, I had two guys in their 80s on either side of me. Both talked in a slow, hoarse whisper, but knew *exactly* what they were talking about ( one was in for his 20th cardiac op ). The nurses, though competent, helpful and  friendly, didn't  seem to really hear a word.
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233616 tn?1312787196
you are so right...docs don't know what you feel.
I'm laying on my couch 24/7 but now "low" enough for procrit...
let them try walking a block in my shoes!!

you've gotten plenty of good advice...

let me just add, look you can lower cholesterol without stantins, oatmeal, fish  oils, omega oils, and of course PPC which you've heard of in here..all safer routes than statins...

that's one..

Two: my observation, not an across the board generality but perhaps noteworthy is that permanent post treatment symptoms seem to go more or less hand in hand with the age and general health of the individual to begin with....notable exceptions might be those using other substances which can either add or detract from that.
Meaning, the older the person, the more likely they could develop immune responses, or "metabolic syndromes" because of the cumulative weakness in health.

Now today I was reading on the fatique hormone connection in HCV...and started a thread on it.
Bottom line is, my perspective, the weaker the endocrine and lymphatic system the more risk of sides.  I take HGH for my pituitary...and this gets me to "normal" levels so I can repair tissue.  It has not allieved all side effects...as I am only taking a therapeutic dose.
One individual who has had a great many side effects is also a male taking estrogen.
the thread I started today may give some insight as to why the overuse or abuse of any single hormone, or a male put on a hormone that imbalances his whole endocrine system, even if done for preventative reason, say to prevent protate cancer, still could lead to more than the average number of permanent post tx side effects.
The question in the end is how much is the HCV tx...how much is all the rest.

Lastly, there is a certain segment of HCV people who persist in using marijuana, drinking, or using other drugs known to harm the liver and health in general. While that certainly does not explain why everyone that has had a bad time has had it...(so PLEASE people don't yell at me peple...no assumptions about anyone in particular here)....but one must consider the idea that all those things factor into ones final results.
Judging by what one clinician told me, and the research also backs this up, the continual usage of any such substances  greatly effects both liver outcome and general health, and the recovery of a healthy immune system as well...and these are not really items still up for debate in medical circles.

what is unfortunate is that not enough is known about the pharmacalogical role that many meds play in all this, but what little I've researched suggests we had all best tread cautiously into that realm. I've already discovered 4 Rx's that I was put on were toxic...
One must also note, to a failing liver many substances thought to be safe no longer are.

I think you'll do really well on tx , and yes it's tough..but try not to worry about it too much....you've seen the good bad and the ugly in here...so you will be an informed patient at least....and hopefully remain a positive one. Just remember I said that you have your first tx induced cry....and come tell mama...we'll be here.

There are months on tx I've thought were from hell...and other months I've just gotten used to the hell...or something...who knows....at any rate....you take it one day, or one hour at a time, and keep your goal in mind...and you'll be fine!

mb
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408795 tn?1324935675
Yes, thanks for pointing that out to me again, I had them separated before but my retention isn't really good and seems to be with me one day and totally escape me the next.  I'll be sure and have my drugs in a row so to speak when I go see the GI man.  There's at least a couple of threads that you all have refreshed my memory with, I will study them really well before my appointment.  Hell I may even keep them in a folder in case I have to reflect on them during my conversation with my GI.  I'm sure it will go well, I was always on a wait and see approach until just the beginning of this year when I learned a friend is on a clinical trial and that started my pursuit to tx, well that and other ongoing ailments.  Anyways, great teachings and words of wisdom from all.  later
Helpful - 0
Avatar universal
Re: Alinia.  It was said up above by Willing, but I want to make sure you don't miss it for when you talk to your doc.  Alinia is NOT a statin.  It has nothing to do with statins or cholesterol.  It's a drug used to treat parasites that has been shown to have an impact on bringing down viral load.  It's just one more drug in the arsenal.

Here are some links to articles about statins and fluvastatin in particular which has been shown to be the most effective on viral load:

http://www.hepatitis-central.com/mt/archives/2008/04/fluvastatin_low.html

http://www.hivandhepatitis.com/hep_c/news/2008/042208_a.html

http://www.hivandhepatitis.com/hep_c/news/2006/071106_a.html

Hopefully those links don't get wiped out.

Trish
Helpful - 0
Avatar universal
Yes, a number of hepatologists have given the green light to statins for at least four years. Of course it's important to monitor enzymes, but that is recommended for statin therapy even if you don't have HCV. As to others down the HCV food chain, word travels slower. For example, my cardiologist this year asked me if it was OK to take statins because of my liver.
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408795 tn?1324935675
I have alot of information that I'm gonna take with me to see my GI man.  The last time that I spoke to him in March was the first time I ever said anything to him about actually going through tx.  He seems like he knows what he's doing and I'm gonna be asking him a whole lot of questions.  I think he will see a benefit in prescribing me a statin, either Alinia or one of the others.  It's really been my new regular doctor who is overly cautious and obviously doesn't know anything much about it.  I've read enough posts just from my question that I have enough information to hit up my GI really tough this time around.  Also, I'm gonna ask him alot of other questions as I am totally serious about him doing his best on me as this could make me or break me.  I used to have a regular doctor and he was the best, he didn't know a whole lot about HepC but he always sent me where I needed to go and he wouldn't let me think of HepC in a negative context, ever.  I had to see one of his substitutes one time and that a-hole told me I was gonna die.  Just like that, I flipped out.  I was soooo mad at that d-ik, when I told my doctor what happened, he flipped as well.  He was soo mad at that jerk, unfortunately my godly doctor retired.  Oh well, my spirituality is what guides me now, so I think I'm in good hands.  God Bless
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