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Bone Damage with Interferon and memory loss
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Bone Damage with Interferon and memory loss

I was reading and noticed a question that a Marsha had regarding bone damage... I finished  my treatment 5 months ago and found that I have a hard time remembering things, my bones also  hurt, I have a hard time sleeping I'm in so much pain, I 'm up to 4 tylenoel a night  and some times that doesn't even help. Iwas recently diagnosed with pantar facitisis (sp?) and have a hard time walking. Is all of this damage to my bones and body coming from long term use of Interferon and rabavin (sp?) If  people are starting to complain about their bones and bodies hurting, don't you think there should be some kind of study going on somewhere.
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184420_tn?1326743408
you need to be very careful taking alot of tylenol or any acetaminophen ... very very bad for the liver..
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Avatar_m_tn
In my opinion there ought to be some lawsuits filed by all of us that are hurting after the PEG.I feel the drug companies put something out there that is worse than the Hep C.It is all about the DO-RA-ME, and since the nostalgia of who we are for having contracted the disease  the powers that be do not care to get it right.Well i have probably said to much and you are probably tired of listening.Signing off!
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Avatar_m_tn
You're not alone coming out of treatment in bad shape. It's all listed right on the drug info sheets although potential side effects are often skipped over or minimized by many doctors who treat Hep C. My personal philosophy -- and others here differ -- is only to treat with these drugs when you're up against something potentially worse like cirrhosis, which was the case with ne when I was told I was between stage 3 and 4. If I had been told I was stage 2 or even 3, I would not have risked treatment. BTW never heard of any problems taking Tylenlol or Acetaminophen post treatment as long as you clear the dosage with your doctor.
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439539_tn?1233469415
Hi jmjm530.Nice to meet you.
If I had been told I was stage 2 or even 3, I would not have risked treatment.
If you don't mind me asking, what did it do to you, physically post and /or during treatment ?I was told the earlier you treat the better the odds.Lower damage, better also.Also, if you don't mind.Are you SVR ?

Hurting 1063- I hate to hear you are dealing with such pain.I hope the best for you.
Bless You All,
Tammy
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Avatar_f_tn
I'd risk treatment even at stage 2.  I know I'm at stage 3 right now and I don't have time to wait.  I don't want cirrhosis looming over me.  I have the opportunity to eradicate the disease while my liver is still viable which will most definitely extend my life.  No crystal ball to predict when the liver will take a turn for the worst.  Better to stay ahead of the game is my opinion.  Also, many never experience any long term effects after treatment.  The ones that do are in the minority.  Granted, your life will change to some degree, but at least you know if you reach SVR you've just gave yourself a whole lot more time on this earth.  Isn't that why we treat?
Trin  
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Avatar_m_tn
KBM: I was told the earlier you treat the better the odds
-------------------
Not really, at least according to the study I saw. What it said was that your chances of SVR were identical unless you were stage 4. Then, yes, your chances of SVR were lower.

What did tx do to me? How much time do you have :)]

Briefly, I was pretty much a couch potato for much of the 52 weeks I treated. I had every type of infection known to man and more than half my body was covered with three different types of psoriasis including welts on feet and hands that made it difficult to walk at times. Was nauceous for the first 12 weeks with a bad case of GERD (chronic reflux) which made eating a nightmare. Lost 30 pounds of lean muscle plus my work, closest friend, my girlfriend and strains with my family. I'm skipping a lot cause don't want to sound like I'm complaining :) but you did ask.

Oh, yeah, post treatment I devloped rosacea and couldn't tolerate the sun or heat for a couple of years. That and my metabolic syndrome accelerated which puts me at greater risk for heart disease.

Went into treatment at age 58 feeling and looking like 40 and came out feeling and looking 60. Want to hear more?

But you know something -- I'm one of the lucky ones because I am SVR and my treatment -- and post treatment experience -- is not by any means near the worst here. Many have had it much worse, especially post treatment.

Maybe this gives you an idea why I feel like I do. And its not just from my experience but from what I read here every day about what others experience.

I hope you -- and most others -- do much better!

-- Jim
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439539_tn?1233469415
I also want to be able to put my toothbrush back in the holder.I just want this gone.I'm falling apart and not treating yet.RA.I just took a test to see if it's caused from hep or if I just developed it.Waiting to hear results.Hands and feet fall asleep.Yesterday had a nerve conduction test.Nerves are good.It's a constant battle once your diagnosed.This really isn't a nice thing to have.You would even have to look and see if you have cuts if you wanted to help someone bleeding.I know I just want it over done with gone.
Thanks Again,
Tammy
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439539_tn?1233469415
Wow.My heart goes out to you.That's horrible that you had and are going through so much.Yes, I did ask.I wanted to know.I alway's see your post on answering so many people's questions and helping in any way you can.I take it you are a wise man and respect your opinion.I never hear you complain, very rarely, only to pick up bits and pieces peices i b-4 e except after c.hehe.Anyway's thank you and again I am going to do more research.I hope atleast your starting to feel a little better as time goes by.What I really hope for you is that you'll feel 40 again.Do you atleast have a chance that your body will resume back to health ???
God Bless, I mean that,
Tammy
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Avatar_f_tn
"Went into treatment at age 58 feeling and looking like 40 and came out feeling and looking 60. Want to hear more?"

if it's any consolation, i went into treatment 12 weeks ago at age 58, looking like 30. I already look 70 and feel 110, so you're doing okay!!

you wrote so well about your experience and i appreciate it a lot.  We're probably all scared about what the cards hold in terms of post-tx long-term side effects but this forum has prepared us for the possibilities.
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Avatar_f_tn
Hi im new to the forum as of august. I finished 52 weeks and was pretty much useless while on the meds, my vl went down but 6wks later was on the rise again. I did feel better after a couple of weeks,  that could  be because my vl was at 200,000,000 when i started therapy. Im back to feeling like it takes all of my energy to walk across the room! My dr, doesnt want to treat me again with peg and ribv. im at stage three. I dont want to take the meds again but i dont want to pick out a plot in the local cemetary. I have had so much pain i could scream for a week. In 1995 i was diagnosed with fibromyalgia about 4 months before i was diagnosed with hep c. A couple of months ago my GP told me i have rheumatoid arthritis. I have NO quality of life. I want something for the pain but the doc says no. I have weighed the pros and cons and came up with this; I would rather live a shorter time with pain meds than live longer with all this pain.
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Avatar_f_tn
In 2006, after several years of medical complains, including debilitating fatigue,  what I feared was early dementia, and joint and muscle aches, I was finally diagnosed with HCV. I wanted TX to make all that "go away," but my hepatologist was straightforward in telling me that there were no guarantees that I would be better and I could in fact be worse afterward. (He required that I have neuropsyc testing before treatment and we discovered I did not have measurable cognitive loss;  I was just having trouble accessing and using the old brain cells. I think that's called brain fog!)

I was in TX most of 2007. I slept most of the time, felt flu-ish for days after each injection, developed  a horrid Ribavirin cough that lasted almost the entire time, mouth sores, diarhea (diarrhea) (sp), nausea, weight and hair loss, and severe depression among other things. Had to give up my career as a college professor and go on disability. But I cleared the virus at week 12 and I made it. Felt better almost immediately after stopping meds this January, but then sort of tapered off. Had first post test at 12 weeks, and IT WAS BAAACKKK.

That's been 7 months and I am resigned to spending my life sleeping 10-12 hours a day, plodding through brain fog when I am awake, and being "disabled." I take care of myself and gentle yoga with targeted chiripractic work help with aches and pains (and the mind). I may be slow and sleepy and foggy, but I'm here.

I don't plan on retreatment unless a miracle drug comes about or my liver starts going wonky on me (apparently in pretty darn good shape). I am just now feeling (mentally) like talking about my experience, so excuse the length of this post and thank you all for "listening."

God bless all of you who have been or are embarking on this journey.

Melissa

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493068_tn?1224768915
My heart goes to all that have lasting side effects and congrats to all that don't. I am very thankful for SVR but never dreamed that I would be in the pain that I am in. It is a constant battle with my fatigue,joint pain, severe headaches and ocular and facial Rosacea. My eyes burn all the time. My dermatologist tells me that he has 1 other patient that has the same intense rosacea and she had the Interferon and Ribavirin as well. It would be so helpful if any of the gastro and hepatologist would take this serious and help us research instead of denying the problems that many of us have. I know I have complained a lot on this forum but it is very helpful to me to know I am not alone in this fight. Thanks to all of you. We need to stand together.
proud48    
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Avatar_f_tn
Thank you for your contributing to these forums and telling the truth in a way that doctors rarely can, and that no pharmaceutical company is prepared to do.
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Avatar_f_tn
You have my sympathy. I was diagnosed with Rosacea right before the HCV diagnosis.  It didn't really bother me then, but got worse during treatment though never had anything as bad as you describe. It's better now. I also have suffered with my eyes. Diagnosed with severe dry eyes years ago. After HCV diagnosis, Sjogren's Syndrom (syndrome) was suspected, but I tested negative for that. I use two prescription eye drops that help, but it is an on-going problem. [Also tested positive for rheumatoid factor, but tested negative for the disease, thank goodness.]

My general internist (not my hepatologist) is great, but I don't think she took dry eyes, aches, fatigue and cognition problem really seriously until the HCV diagnosis. Now everybody takes it seriously, but unfortunately, they don't have much to offer in terms of help.  

It's sad, but I guess we are in unexplored territory.
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493068_tn?1224768915
Thanks for your sympathy...It just helps to have one person listen and really know how it is..... you have to have HCV and treated or not treated to really know. Since treatment I was postitive for Sjogren's, developed the painful swelling joints, Rosacea started and the glaucoma, and the fatigue never went away. Our families only hear and see what happens but it is us who understand!
Blessings,
proud48
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Avatar_f_tn
After treatment, the bodily pains persisted, I think exercise during treatment might reduce this, but I was also diagnosed with fibromyalgia.
The memory loss is still effecting me since treatment 4 years ago, keeping the mind active helps like reading or crossword puzzles, but I still totally forget things and sometimes forget how a word is spelt.....

In saying this, it does get better over time, a long time, I dont know if I will ever be the same mentally or physically.
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163305_tn?1333672171
Four months after finishing tx, I fell and broke my arm. I've never broken anything in my life! My family doesn't break, including my 90 year old mom whose fallen out of bed.

Two weels ago I was tested by an herbalist/MD and my vitamin D levels are VERY low. My wbc and platelets haven't come up the to where they were pre-tx and its been a year since I stopped. ( I relapsed)

The good news: my memory is improving and my dreams are finally returning.
This is a rough road.
I for one, wish they were looking for something to replace interferon instead of adding another component to the mix.
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Avatar_n_tn
Jim's comments pretty much sum up my experience with tx, and even though I am happy with the outcome, (I have been SVR for 5 years), my two long, high dose tx'es produced a myriad of long tem syndromes and painful symptoms.  I deal with them but often fear where this is all leading.  Joint problems, neck hip and back pain along with limbs feeling numb or bones feeling deep pain...dry eye and lupus-like syndrome...still very sun sensitive....often fatigued and feeling brain fogged...balance problems frequently...on and on.

You are all correct that the medical community has not really taken a hard, cold, honest look at the fallout from therapy yet.  I think many are in a state of denial.  I am sure that many people have few sx after therapy, BUT I am also very certain that a huge percentage have ongoing, debilitating issues.  I see the stories every year on this forum.  I am not angry about it, nor do I regret doing tx.  I just wish there was a stronger desire to deal with the fallout and after effects of tx by the HCV medical community.  

Best wishes to all of you.

By the way, I do still manage to live a full life, manage a corporate consulting business, have an extended family, travel and do some sports....so I will not let this aftermath stop me from living life!  Its just a bit more painful and difficult than I would prefer!

DoubleDose
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Avatar_m_tn
Take some stem ehance and your problems will be solved...I GIVE YOU MY WORD....i know it proberly sounds like sometimes certian things seem too good to be true...BUT I will say  again....this stuff works...i will even send you a free weeks supply

give me you mailing adress
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439539_tn?1233469415
Thank you All, so much from me for sharing.If that isn't first hand knowledge, nothing is.
jmjm, Yes, I am so interested in ALL the stuff you've had to endure.It's sad you have had such intense pain and struggles,all who have.It's so informative.First hand knowledge.Priceless !
Not tx., yet and a high metabolism is what I had .Some days at 9 am I feel like it's been a full work day.Yes, jmjm, a bunch of people are interested in your health.I ask again.Again thank you so much for helping in ways you don't even know how much.If you were my neighbor I'd bake you a cake.
Thanks,
Tammy
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476246_tn?1310999221
It is really heartbreaking to hear what you have all been through. Wow, I didn't realize it could be that bad. Just wanted to extend my well wishes and love....

Hugs to you all.

Marcia
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179856_tn?1333550962
Marcia,

While sides and after effects indeed can be very bad always remember - this is a tricky disease we are fighting and end stage liver disease is MUCH worse than any of the problems that might surface from the SOC.

It's not as if we are taking the meds for a simple pain or cough - this is life and death stuff.  For real.  Truthfully I believe waiting to treat after stage 2 is a huge gamble and one that I was not willing to take.  It's a hop skip and jump to stage 3 and 4 and what if while you are 'watching and waiting' you do miss that stage 3 diagnosis and find out you've already gone to 4, cirrhosis and no way back from that?  Or you develop liver cancer which is generally fatal in the interim?  Who can say if and when that cancer would develop - it doesnt' have to be at stage 4.

So, yes we might be left with some autoimmune problems and pain but when you stop and look at the alternatives............................we did the right thing.  In a perfect world there would be drugs with less chance of sides/problems but when you look at all the people who are CURED of this disease....................well - that is a pretty wonderful thing.

Look for example at someone with HIV - I'm sure they would LOVE to be able to use the word "cured".  We are LUCKY.

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253566_tn?1219683299
boo hoo, portann already beat me to it!!!

went in as a 42 year old male looking and feeling 25.... 72 weeks cured me and four years later LOOKING & FEELING LIKE A HUNDRED YEAR OLD WOMAN... what a giggle it all is, LOL...
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Avatar_m_tn
I treated within 2 months post transplant. I treated 3 times for a total of 3.5 years.
The first two treatments were for 52 weeks with low doses and weren't successful.
The third was with full doses and extended to 73 weeks and I am SVR. I stopped treatment in June 2004.
Karen and I are still together and have been since shortly before my liver transplant in June 2000. We stayed together through 3.5 years of treatment and my transplant which I can assure you wasn't easy for Karen or me.
I had few. if any, infections while treating and have had one I can recall since treatment.
I had no skin diseases during or after treatment.
I lost weight and some muscle during my treatments but have recovered since then.
I wouldn't argue strenuously that, if you are stage 1 or 2, waiting for Telaprevir is an option. But, I wouldn't argue against treating in those circumstances either.
And there is always the possibility that a physician will err when staging your liver. There are articles which suggest that a significant percentage of biopsies will be read differently by different pathologists - I think the percentage was 24% and the difference is 1 stage and in some cases 2 stages. So when you hear stage 2 can you really be certain that you are not, in fact, a stage 3? And then how fast will you progress?
I was transplanted for hepatitis c and, in the majority of liver transplants in the US, the underlying disease is HCV. So it can be a very serious disease if left untreated.
Jim and I have disagreed on this issue for quite a while now. Maybe it has to do in part with how we came out of treatment health-wise and I think my liver transplant impacts me significantly - I am not at ease with this infection probably in large part because it almost killed me.
There is no disagreement between Jim and me that treatment with interferon and ribavirin is a very rough ordeal. And, it is certainly possible that you could suffer auto immune disorders post treatment. But there are associated diseases with HCV infection and I believe that the longer you are infected the greater is the risk.
I think waiting until you're up against cirrhosis before treating is extremely dangerous advice. If you are really a stage one or two and want to wait I think that is reasonable. But the thing is that even with the PIs it appears as if Peg and Riba might still be in the mix albeit for a shorter time so waiting might not spare you the joy of the Peg/Riba combination.
Mike
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Avatar_m_tn
Yes,  I waited until I was between stage 3 and stage 4, because that is how I factored in the risk/reward equation for myself in consultation with my doctors who did allow me some lattitude.

But as I've mentioned in the past, a lot of this has to do with how I deal with risk on a personal level, and I try not to interject my personal risk approach into advice to others, if "advice" is even the right word in a forum of non-professionals.

My advice/opinion to others has always been to think very hard about treating if you have little or no liver damage (it's something I personally wouldn't do and didn't do)  and to treat agressively if you have significant liver damage, especially if you're the hardest to treat genotype, genotype 1.  I also often state that there are two sides to this coin which often seems left out of the many pro-treatment posts here for those with little or no liver damage.

Consistent with this, I have therefore mentioned to stage 0's, 1's, and 2's, that personally I wouldn't treat now -- but I have never tried to persuade a stage 3 on not treating, except maybe to try and get into a trial as opposed to SOC.

Like Mike, I also think "waiting until you're up against cirrhosis before treating is extremely dangerous advice" and I would never advise it, even though one might argue that I did that myself although "up against (cirrhosis)" is open to interpretation and I spent over an hour discussing this with my doc and walked away feeling that I did have time. I can also understand others thinking there might not have been time.

As to the "associated diseases" related to HCV, the irony is that many of these same diseases/conditions are caused (or at least brought out/accelerated) by the treatment drugs themselves. Pick your poison here.

Hopefully, and I'm sure Mike's on board here, people will take all our opinions/comments/advice as an aggregate, and combine it with both independent research and the counsel of a good liver specialist (hepatologist) who has treated large numbers of HCV patients. In my case, I consulted with around half a dozen from my last pre-tx biopsy (3 years before tx) to the end of treatment.

My approach look like pushing the envelope to some, but I did not fly blind. Sought out the best advice I could and then made a decision. I'm a big boy, we all are here. In the end, the decision is ours.

-- Jim


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Avatar_f_tn
i feel really privileged to read the previous posts by JMJM and MikeSimon. They're the highlights of my day today.
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Avatar_m_tn
When you wrote: "My personal philosophy -- and others here differ -- is only to treat with these drugs when you're up against something potentially worse like cirrhosis, which was the case with ne [sic] when I was told I was between stage 3 and 4" I took that as advice. People often ask for advice by saying something like "what would you do if you were in my shoes?". Or they might say "when do you think someone should treat?". Though you might argue that you weren't advising people to wait until they were up against cirrhosis I think that is precisely how most people would interpret your post. We could parse it but I think it's clear that it sounded a whole lot like advice and I thought it was dangerous Jim.
I don't post a lot recently because there are others who are newer to the boards who are very knowledgeable and willing to answer the questions. I am not looking for controversy and, despite how it might look, I try to avoid it. I do, however, care about the members here getting sound and responsible advice and that is why I took the time to post to this thread. I think you are a great asset here Jim but, sometimes I think you go too far. I think you did in this thread so I had to get my 2 cents in.
And, I would be shocked if you know 12 reputable hepatologists who recommend that  patients wait until they are "up against cirrhosis" before they treat. That certainly hasn't been my experience and I have spoken with transplant surgeons about this. In fact, though I was told in 1995 that is was too late to treat, I question whether treatment at that time might have spared me from transplantation.
Mike
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Avatar_m_tn
Well, thanks. Always nice to hear  that someone is getting something postive in these types of discussions.

I did forget to add the obvious, but sometimes it needs to be said. My personal experience treating and Mike's personal experience are just that. Our personal experience. Your experience, everyone's experience is different.

I don't mean to suggest that people will have as difficult a time as I did, nor do I think Mike is suggesting that people will have the same experience he had in terms of side effects and marital support.

What I am saying is that a certain per cent of us -- and I include myself -- really went through both physical and personal h*ll treating, and I mention that not for sympathy but to put it on the table for those thinking about treating so they can factor it into the risk/reward equation.

-- Jim

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Avatar_m_tn
I tired to clarify my position as best I could in my previous post.

Perhaps you can show me where I suggested that "12 reputable hepatologists ... recommend that  patients wait until they are "up against cirrhosis" before they treat." What I said was: "I spent over an hour discussing this with my doc and walked away feeling that I did have time. I can also understand others thinking there might not have been time."

That's a rhetorical question btw because this is where these types of threads start going South. And I care about members here too, Mike, and the advice they get.

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179856_tn?1333550962
Just a little tiny side note:

"What I am saying is that a certain per cent of us -- and I include myself -- really went through both physical and personal h*ll treating, and I mention that not for sympathy but to put it on the table for those thinking about treating so they can factor it into the risk/reward equation."


MOST people who do treat will be doing regular old doctor advised SOC.  They will not be double dosing and triple riba'ing as some of us did - those of us who later paid the price for it.  I have to believe that the reason for some of the severity of our sides/situations was the inability to just take the status quo amount of meds.........and although I did achieve SVR it was at a cost.  That cost to me was worth it; however, if I did the typical amounts of medications suggested - I probably would not have had NEARLY the amount of problems.

In all honestly the risk/reward situation and our level of debilitation later was strictly and only brought about by ourselves.......and would not happen to most people in a million years from standard SOC.

I take responsibility for my own actions here but most people have to remember this most likely will NEVER happen to them.  It is only because we went outside the box and against conventional medicine that we in fact had such an incredibly hard physical and mental road.  THAT I would not advise to ANYONE.
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Avatar_m_tn
I made a mistake - I didn't remember correctly - it was half a dozen.
"I consulted with around half a dozen from my last pre-tx biopsy (3 years before tx) to the end of treatment."

I interpreted that as suggesting that they were in agreement with your approach and decision to wait. You didn't say that so I apologize for mis-remembering and drawing my own conclusion

Mike
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Avatar_f_tn
Maybe this is a dumb point,  but I have always been led to believe by my Doctors, when the liver is to far gone, they will not treat with interferon. Because at a certain point it causes more damage to the liver and speeds damage much quicker.  

Sometimes we are quick to blame treatments for things we would of gotten anyway, I am not saying that this drug does not mean risk and reward,   But we get older we start falling apart naturally.

I asked Doc D, about neupogen and the risk to bones and osteo, he said no.  I read on line also that it was less than 2%, as the permanent risk to thyroid is less than 8%.

Those are small risk, yeah they happen.  

But I am white out mode from infergen what do I know.

Deb
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439539_tn?1233469415
I didn't take anything jmjm said to that level.I'm one that researches and listens.I only took it as his way of dealing with this awful thing we are sharing.He didn't recommend not to treat.He just meant that he's had a radical time pre and post treatment.That was the way I took it.It's a serious decision to each person individually.Each person has to live with the decisions they make.jmjm didn't in any way make me not want to treat.I am as soon as I appeal my ins. co. for the second time and win.I am so curious though as to what people know first hand by experience.Knowledge is power.jmjm really didn't mean to imply any different knowledge than he has or is having a rough time with it.However he made his decision on how he would and is being treated.He is the one living every minute of everyday with all his symptoms.I was and still am curious as to what he has had to go through.
mikesimon hi it's nice to meet you.I'm interested in your story too.I have posted a few times and end results I didn't feel good about some of the things I said.I'm the one that ask jmjm to tell me.I ask , he answered.That made me feel good.I am interested in what he said.Does that make me want to wait to treat?No.It makes me more intune as to what can happen firsthand if I would decide to wait.It atleast gives me more power about HCV and the dangers and risk one takes on one's journey.Isn't that what it's all about ? One's own journey, in the end.
It's really sad if someone can't make informed decisions by one's self ?
Not because someone on this forum says so.I hope the best for you.I'm glad to hear you are SVR.Again, nice to meet you.

nygirl7, Nice post.You worded that perfectly.Again knowledge and I personally want to thank you for the knowledge.Nice to meet you.If it weren't for people whom went outside of 'The Box', we the people wouldn't benefit from it.Thank you for that.

jmjm and all,I hope by ME asking YOU about your experiences that I didn't start anything.

ALL,Read, Read and Read some more.Make informed decisions.Good Luck to ALL treating,
Getting ready to treat,
Done treating,
Don't Argue.You can't take back words already spoken.Let's ALL be one in this Battle and Bottom line.Let's WIN ! Sorry about the long post.
Tammy
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Avatar_f_tn
I guess I'm relatively new to the battle. Almost a year of reading and right at 6 mo in treatment.  I listen with an open mind and make decisions that best suit me. Being fairly new I don't know the history of those who treated before me.  I only know what they relate on this board.  It isn't always black and white.  I don't hinge on every word someone says just because they have been around longer.  Their experience is unique to them.  How they administered their treatment can totally contradict how I wish to have mine administered.  NYgirl pointed this out.  Everything comes with a risk.  I knew that when I signed up for this cattle drive.  Treating is a huge decision to make and many things must be considerered before doing so.  Advancing liver disease which is what I have (stage 3 ) didn't afford me the time to ponder whether I'm making the right decision.  It had to be done and when I went home and thought about it I realized I didn't have the time to wait for better drugs.  I had to go with what was available and hope like h-e-l-l it works.  Philosophies of others can be misconstued by new and less knowledgeable people on the board and caution in how we present our case can impact negatively in the long run for those people.
Trin
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264121_tn?1313033056
the effects of treatment are no joke.  I'm just starting to get my life back again and I know that forever I'll at least have ra, and I suspect I've got some other issues, including some cognitive difficulties, but I'm not looking too hard at that right now - just hoping they'll continue to get better as time passes.

Forget for a moment that I was an acute patient - I think that with my genotype I would have been nuts not to take advantage of the natural statistal boost it gave me to treat right away.  But if I had been a chronic patient with low liver damage when I discovered I had hep c, how would I have known that I wasn't risking long term damage to my kidneys by delaying treatment?  And wouldn't I be concerned about living the rest of my life with a damaged liver if I waited until I was at a 3 or a 4 before I treated? How did you reconcile those questions?  I'm just kind of wondering, because those are my main concerns with that issue.  I certainly, especially after treating, am not knocking the dangers of interferon.  I see them and I know them personally.  

Prior to treatment I didn't appreciate its toxicity.  Its not a nice drug and I don't think it just damages the minority, or a small number of patients.  We know by study that 25% of everyone treated with interferon comes out of treatment with an autoimmune disorder.  And if that's true, you can imagine that interferon is causing other damage as well, that just hasn't been measured by study.  The anecdotal amount of thyroid damage seems rather high, and it was the first thing my doctors tested me for so it made me think they've seen it a good bit as well.

But how do you, or did you, weigh that against the fear that a compromised liver, or compromised kidneys could shorten your life span?  I'm just interested in your thinking on that, because that's what I couldn't get past when I pondered the "to treat or not to treat" question (again, kind of moot for me as an acute, but still, I frequently thought about the "what if" of that question and still do, in fact).  In my family, people live up into their nineties.  I would have worried a lot about the ability of organs that had been weakened by hepatitis c getting me that far.  

I think these discussions are valuable, and these forums are for everyone, pre-treatment, during treatment, and post treatment.  For anyone to base their treatment on someone else's experience would be careless, stupid, and rather... sheeplike.  I don't think we should censor ourselves though, out of fear of affecting newer posters.  When I was new, I found this site to be the most valuable and the place I stayed BECAUSE of the different opinions and the unvarnished truth from everyone.  In fact, I think my first week here there was a huge fight going on about something or other that was hugely long - we haven't had one of those in while (not suggesting we do, just sayin').  But I knew nobody was sugarcoating anything and people were being honest about their perception of their experience.  Therefore, I could ask questions and trust that what I was getting from people was the truth, as they saw it, even if they didn't agree with each other.  And that was much more valuable to me than people trying to soften things for my benefit, or trying not to worry me.  If I didn't want the truth, I wouldn't have been online looking for it in the first place.
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I just wanted to thank everyone who gave me more insight on the lasting effects.  I am a SVR so far, I have type 1 Hep C and the reason I did treatment was for my children. I was told that I didn't need treatment because I had no liver damage yet.
But I did it because I didnt want to wait until I got to stage 2,3 or 4 , I wanted to be there for my children, I wanted to see them grow up, go to college, get married.  When I found out I had Hep C I was very angry,  I don't have any tattoo's, I don't drink I have had the same partner for 26 years, I have no percings, I don't do drugs , no blood transfusions, nothing.  I was the only person who had it in  my family, the only thing that we could figure out is that I went to Mexico. Like a lot of people do and had dental work done.  I'm not saying don't go to Mexico, but everyone should check out the office you are going to .  
Anyways when I found out I was upset, I wanted to go out and drink, do drugs and sleep with everyone I saw, have a few tattoo's and at least have one blood tranfusion in my life...... I thought if I was going to blamed for having this sickness then I might as well enjoy it. I finally had my children telling people I had cancer, because that is more acceptable then telling people you have Hep C. I lost friends, family and few rumors about  my life that I didn't even know happend in my life .............

But after all is said and done, I might hurt after the day is done and I might not remember your name, and I might have to take a nap once in while still,  But I'm alive and I think this sickness made me stronger.  I get to watch my children grow up and maybe I will be here when they go to college and get married.  
But after all is said and done, I 'm glad I'm still here  and if I have to I will do treatment again, because a few hurting bones and some memory loss might suck, but being six foot under would really suck.......

Here is a closing tip for everyone I had no side effects during treatment, I think it was because I drank 12 - 8oz glasses of water brfore 12 noon ever day and on injection days I would drink 3 more glasses of water before I took my shot.... I think the intake of water, just made the medication go through my body a lot faster and I think It helped my kidneys probably clean out a lot of toxins in my body at the time.

Again thank you for your info and help, reading your messages makes me feel better, I should of been writing you guys when I was going through treatment. Hopefully I won't ever have to go through treatment again.

Bless you all and I wish you all the luck in what ever stage you are right now.

Claudine
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Your story about losing family and friends is very sad. Of course, if they ditched you because you have a disease, you're probably better off without them. But I know that doesn't really ease the pain.

Congratulations on SVR. Hang tough.

Melissa

PS -- just to underscore the points about everyone being different -- I, too drank about 100 ounces of water every day during treatment and my side effects were horrible. (I also made an incredible number of trips to the john every day -- and night!) I know it is helpful, but it's not a magic bullet for everyone.



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Its 2010 now and this thread is several years old BUT, for anyone 'new' who maybe reading here - I was diagnosed this past February ('10) and have yet to even have a biopsy let alone start Interferon/Ribb and I can tell you I suffer from everyone of the things called 'side effects' here post treatment ! I loose my balance and top to the side when walking. I can no longer spell and it takes me forever to compose a simple e-mail/post because my brain is so 'fogged'. I have a strange rash like issue on both my calfs running down to my toes - my PCP has no idea what it is nor does my GI doc. I get leg cramps all the time - while driving and in the middle of the night. I can't reach around to itch my back because my joints no longer have that kind of flexibility. In fact, getting up from a kneeling position requires me to grab the couch/chair etc and pull myself up. Its very easy to conclude that what you ate, had taken med wise etc., that it is this that made you sick. Many who get a stomach virus have a hard time even looking at the food they ate last prior to getting nauseous (for example). Its the brain making the association - probably a built in protection of some sort common to humans. Hey, a burn hurts - you know not to pick up something hot again. Hope I'm making sense here - its 3am and I really should be in bed LOL !! Anyway, keep this in mind please. Honestly ? I almost shut down the page and decided 'no way am I starting Tx yet' after reading half the page or so. Thankfully I decided to continue though and found that some of the posters had been taking much higher levels than the doc might prescribe - that puts a whole knew spin on this thread !! I'm not trying to be nasty here - as I said, I need to get to bed but I felt it was important to say this before heading off - more direct then I would normally write and defiantly more sloppy !
Hope this helps someone....
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From my reading, it seems that a non-IFN regimen is ten years out, at least, if everything goes perfectly. So, IFN is going to be a component of the SoC for the foreseeable future, although likely for shorter treatment durations.

Since we can't escape it for now, is it wise to wait through 10+ years of aging and liver damage?

Tough question. I'm struggling with the tx decision even as I type. Thanks everyone for the valuable advice herein, and my best to all of those experiencing after effects from this treatment.
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I wish I would've found this forum 3 years ago when I started treatment. I just found it looking for a connection to vertigo.  I'm having queasiness and headaches and was wondering if that is another side effect. I cleared the virus (my treatment went from April 2008-2009).  I didn't know that the side effects would last so long.  I'm a teacher and went back to work in Sept. 2009 and have been struggling. I'm going to try to go on disability cause I feel really anxious from all the work, I've been diagnosed with 5 herniated discs, 2 rotated discs in my neck to add to the mental fog, low level depression, the feeling of not having any motivation or desire to do the fun things I used to enjoy, low energy.  I went in being 54 feeling 40.  Now I look 54 but I feel 70 sometimes. On top of all that, I've been HIV+ since 1989, assymptomatic, and continue to be that way. I pray to GOD that it stays that way. My husband, on the other hand, is on meds for the HIV, but never developed Hep C. I thought the HIV was what I had to worry about, and maybe I will have to in the future, but for now, I'm glad to deal with all these side effects and not with AIDS.
God bless all of you,
I
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Have any of you had problems with your thyroid? I had thyroiditis on Dec. 2009, and am still having problems. My Dr. said that the thyroiditis usually happens during the tx but mine started 8 months after I had finished.
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I was dx'd as hypothyroid 6 months post tx and have been on Synthroid since the end of Dec. I could feel a marked improvement and the swelling in my knees has disappeared. I go in for a re-test in a couple weeks to see if the meds need any adjusting. Much as I hated to take any more meds after tx, it's a small price to pay, IMHO, for the benefits I've seen so far.
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I had this treatment 6 years ago...I worked the entire time as a driver for a company that interlined freight. Very physical work. It almost killed me, But the side effects I have now are the worst ! Bone joint pain to the point of surgery, Fibromyalgia, Or the Host of symptoms they have. Insomnia...y'all know. Its this arthritis that's driving me insane. I was 43 at the time I'm 49 now and I feel 110 ! The worst is that people look at me as to say { You LOOK OK ! } I pulled a whammy though, I got the hep c from the mass inoculations that the Gov. Gave recruits so I went to work for them and luckily just made the time frame to be a permanent employee before falling all the way apart..Yes there definitely is long term effects ! I was the guy who always hunted the top of the mountain, Now I cant even ride my motorcycle on short trips...Glad I found this site !
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Hi - You latched on to an old thread.  To start your own so members will answer you, Click on "Post A Question" - green button at the top.

Welcome to the site and good luck,

Anne
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<<< Agree with Anne but wanted you to know, I Feel You Brother!
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After a year of treatment, I wanted to die.  It was awful.  It took me 2 years to feel normal.  I aged so much.  I also looked 70 and felt 100.  I was only 54.  I'm 58 now and not on any meds.  Only leftover from the interferon is memory loss.  But, I feel great.
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Though this is primarily an older thread, it should be basic reading for all of us...since it presents both sides of the issue pretty clearly, and demonstrates the grave dangers in some cases of NOT treating HCV, and for others the hazards of having treated.  The post-tx problems all sound pretty similar in those who are affected, and I think we all can see and hear in this thread the agony that both groups have endured.....those with severe liver damage and life threatening consequences from their HCV...their decision to treat was a 'no brainer'....then the other extreme..those that felt fairly good, and had only mild damage and ended up feeling like their life was effectively over...or at least badly damaged.  These are the two ends of the spectrum regarding both sets of risks.  Then somewhere in the middle are those with intermediate level damage who must weigh the risks and make some serious decisions...and need all the straight information they can get to base a good decision upon.  Its a race against time for them....wait for easier less damaging therapies?....treat right now before they accelerate into cirrhosis?  look at the studies on post-interferon outcomes to see what the risks and odds look like???.....OH WAIT...WHAT STUDIES?????   That's just what has been missing.  How can ANYONE make a reasonable risk analysis and subsequent decision when there is literally just about zero hard, concrete data out there from large scale follow up studies...regarding the percentage that end up with long term damage.  This is exactly why I continue to elaborate on this subject.  It is just a simple conclusion that there SHOULD have been many studies done by now...if only to allow prospective treaters to clearly, and accurately assess the 'odds' of damage.  I mean, if large scale, long term follow up studies showed a 2% or a 5% risk of serious consequences from tx...treaters could factor that into their decision very easily.  If the studies , on the other hand, demonstrated a 28%, or 49%, or 82% with serious after tx problems...they could likewise factor that into the decision.  As it is....we have NO clear percentage data to inform decisions, nor to inform those in the affected group of how many others might be out there!  

So, I think the issue is important, and is a very separate issue from treating because one is in an advanced stage with HCV.  Its all the in-between cases that need to know more.  And, sorry to say, there is only anecdotal information out there.  Avoiding the initiation of large scale studies does us ALL a grave disservice.  Its part of the science and ethics of modern medicine.  Anyway, I think this thread is a good, balanced thread on how to approach the issue of long term side effects risk.  Good basic reading for all concerned with HCV and treatment.

DoubleDose
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But, I feel great.
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Nice to hear and congratulations on your SVR....

Will
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I am stage 2 and Dr. wants to treat- I am older so am getting a bad feeling about the permanent side affects I know would be certain.. so quality of life issues come forward... do I want to live sick and miserable..probably not, do I want  to  chance 1 1/2 years of waiting for the new treatment that does not have the side affects..  I'm a gambling women, but now the stakes are out of this world... any input?? thanx--- diaga
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My husband finished his meds Feb 13, 2012. The fist Doctor we went to and started the treatment did not tell us the affects after the treatment! We so wish we had known.  Jeff is only 52 at time of treatment starting 8-29-11; Jeff was Geno type 1. Worst one to get. Our blessing was stage 2 on liver but load count was over 6 Million. I feel if we would have known the affects after the treatment, we may not have gone through treatment or at least talk about what if no treatment what happens to doing treatment. We are in the prime of our lives and Jeff can't drive his bones ache, he feels like he is 80 and yes he walks as if he is in his 80's. I call him my old man, and we just laugh about it but he is going through many tests to find out why his bones ache, hip gives out, loss of memory, and vertigo. This all started about a month after treatment. Jeff was on three types of meds. This dropped his blood levels extremely low! I would think really hard about quality of life what will happen if no meds, a 2nd option is always a good idea. As it is life is too short and we had lots of plans for traval and as of now Jeff has a hard time in the car (vertigo). I wish you the best of luck and you will be in our payers, Cindy
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My husband Jeff wanted me to reply back and thank you for the information. We don't know how he got the Hep C, but he was in the service for 21 years and lots of shots and surgry.
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http://hcvets.com/

The VA Testimony before the Subcommittee on Benefits Committee on Veterans’ Affairs, U.S. House of Representatives, April 13, 2000, Gary A. Roselle, M. D., Program Director for Infectious Diseases, Veterans Health Administration, Department of Veterans Affairs, state, "One in 10 US Veterans are infected with HCV", a rate 5 times greater than the 1.8% infection rate of the general population."

One in 5 of these Veterans are from the Vietnam era.

A study conducted in 1999, by the Veterans Health Administration (VHA), and involving 26,000 veterans shows that up to 10% of all veterans in the VHA system tested positive for hepatitis C.

Of the total number of persons who were hepatitis C antibody positive, and reported an era of service, 62.7% were noted to be from the Vietnam. The second most frequent group is listed as post-Vietnam at 18.2%, followed by 4.8% Korean conflict, 4.3% post-Korean conflict, 4.2% from WWII, and 2.7% Persian Gulf era veterans.
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This link pertains to bone loss as attributed to IFN treatment;

"Decreased bone mineral density after therapy with alpha interferon in combination with ribavirin for chronic hepatitis C "

http://www.natap.org/2008/HCV/022008_02.htm

(title and first paragraph)
"Decreased bone mineral density after therapy with alpha interferon in combination with ribavirin for chronic hepatitis C


   Journal of Hepatology Nov 2000

Jose A Solis-Herruzo1, Gregorio Castellano1, Inmaculada Fernandez1, Raquel Munoz1, Federico Hawkins2

Received 13 August 1999; received in revised form 24 February 2000; accepted 10 May 2000.

"We conclude that treatment of chronic hepatitis C with combined therapy for 12 months may cause a reduced BMD in almost all patients Although this study does not definitely prove that this treatment was the cause of the reduced bone mass found in this group of patients, we believe that physicians should be aware of the risk of this potential secondary effect of the antiviral therapy..... A survey among male patients, aged between 31 and 48 years, who had been treated with either IFN alone or IFN plus ribavirin for 12 months, showed that only patients on combination therapy displayed low bone densitometry T-and Z-scores..... The T-score values were in the normal range in group 1 (0.19±0.6) None of them had T-scores under -1.0. Four of the 19 patients treated with this combination had T-score values below -2.5, that is, in the range of osteoporosis. None of them presented symptoms of bone fractures. The remaining 15 patients showed T-score values between -1.0 and -2.5, that is, in the range of osteopenia."
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(my comment-willy)
One would expect given these results there would be more followup studies.  If someone can find these it would be a good thread to place them in; perhaps they will refute these findings.

Given that there is bone loss it could also explain that some people have dental issues post TX, but perhaps if that is true it could be due to a different/separate mechanism.

willy
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I have been reading all these comments about bone and joint pain post treatment-here is my story-I have herniated and bulging discs in my neck, along with mild stenosis and arthritis, I also suffer with lumbar issues, I have been in chronic pain for nearly 14 years with it..  I am unable to turn my head fully to the left, or up and have a constant headache.  My arms, hands, knees, left foot and toes and hips would go numb.  ok, here is the weird part, I am on round 2 of treatment, 1st time peg and ribo only-48 weeks, this time triple therapy with incivek added, 24 weeks.  Both times absolutely NO neck pain, and full range of motion while on treatment.  My doc is baffled by this, she said my pain should be worse.  Any thoughts?
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One  thought about bone loss during tx: due to this possibility I feel it's important we keep up our intake of calcium and vitamin D during tx, as well as keep walking, or doing other weight baring exercise.

Counter the possible side effects by preparing for them.
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It would be mere speculation on my part.  If most doctors are unaware or unable to treat many of these post TX issues what weight would you give to an uncredentialed layman?

I take no joy in posting such things.  My hope is that after a ponderous amount of posts on the subject that someone with the credentials, some ability, and perhaps some information or insight that such threads provide will bother themselves to look into the phenomena of post TX sides.

While these threads may not provide answers they serve as that impetus for the medical fraternity to take some action for this group of people who have been affected.  Until one understand the cause of the damage it is hard to say if prophylactic preventative measures could help or whether some therapies or vitamin/mineral/dietary deficiencies could provide relief, or whether it is damage that cannot be reversed or repaired.

I do not know the answer, but I wish that this would get more attention from health providers or specifically, from those who provide the drug approval.  I wonder if it would be worth writing the FDA and ask for an inquiry.  The drug companies have had ample time to provide an answer and my guess is that they know the answer, or a pretty good idea.  If it were to be 1% or 5% of those who treat, it adds up to a sizable amount, especially considering the resurgence in treating due to triple therapy.

The question to ask the FDA or drug companies is what is an acceptable number or an acceptable percentage of damaged patients?

willy

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Wow on the BMD.  Just wow.  

I will vouch that it does bizarre and painful  things to your joints:  pains that come and go; extreme sensitivities in the bones that come and go; foci of pain and damage that moves from joint to joint month to month.  

I try and stay away from all dairy / milk products, factory red meat, processed wheat, potatos, nightshade veggies, coffee, sugar, etc.  Not only do they inflame my joints and arthritis, they negatively affect my psyche.  Very sensitive to these things post-treatment.    Sounds crazy but that's the way it is.

No spaghetti. No pizza.  

The more green leafy vegetables and fresh (like just made in a juicer) juices I drink, the better I feel.  Try it for two or three days.  

A guy named Pagano wrote a book about psoriasis and psoriatic arthritis outlining a diet that just works.   He admits to not knowing (and not really caring) why - he just knows that it works.   It sems to work.

Medical science is catching up to anectodal remedies on this issue, too.
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Your comment is flat out wrong - normal doses can lead to bad effects.  It's not just double doses etc, and frankly I am surprised you would write that.  

Before OH gets on here telling me to be positive, I write for those who are young or old and value quality over quantity and are trying to decide whether to treat: "Think long and hard."  

A small number of people on these boards seem to be ardent and continuing advocates of jumping in on interefron, and they seem to minimize the potential side effects, temporary and permanent.
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Avatar_m_tn
Keep in mind that this is an old thread, what nygirl wrote was 3 and a half years ago, but yes, I have seen that argument made since then.  It may be partially true, in that for some people even partial doses of TX may be harmful, and so double doses may be increasingly so.  

My view is that for many people current therapy is as safe as they can make it and for it to still be effective (to the degree that it is).  If they watered it down to make it safer if would cure many fewer people.  But yes, for some percentage of people the "normal/safe" dosage it harmful in the longer term.

The issue is that there was no other means of treating people; to save larger numbers of people a percentage was going to have to be exposed to this risk.  I'm not even really sure they understood the risk or the damage.  My hope is that since interferon is moving towards being phased out of HCV treatments, that these people can soon get some help.

If bone loss were as simple to prevent as orphanedhawk mentions, it would seem a shame that the medical community isn't helping people prepare for this.  Only fairly recently has there been a "push" for people to check their Vitamin D levels prior to TX.  I see this on bulletin boards but seldom hear it from doctors.  Hmmmmmmmm.

willy
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PS..... I am sorry I spelled your membername wrong.  That was me not paying attention.  : )  Nothing meant by it.  : )

By the way...... it seems to be a cr@pshoot.  I have seen people have differing sides; first 2 times no post tx issues; 3rd time issues.  There are people on this board who have treated many times with no serious issues. I understand why it would seem perplexing to the doctor.  All I can say is that it is not common but withing the range of normal, if that makes sense.  : )

willy

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Avatar_m_tn
I think it's wrong to not help with your pain. I heard no to many times. I went to a pain clinic and they had no problem putting me on medication considering all my symptoms.
Check out a pain clinic, that's what they do, treat chronic pain.
good luck
gail
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