Bone Damage with Interferon and memory loss

[Hurting1063]

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.

[Trinity4]

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

[kickboxingmom]

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

[Deb_c430]

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

[mikesimon]

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

[nygirl7]

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.

[jmjm530]

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.