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Bone Damage with Interferon and memory loss
by Hurting1063, Aug 19, 2008 01:26AM
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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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
-------------------
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
Thanks Again,
Tammy
God Bless, I mean that,
Tammy
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.
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
proud48
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.
Blessings,
proud48
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.
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.
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
give me you mailing adress
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
Hugs to you all.
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.
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...
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
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
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
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
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.
"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.
"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
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 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
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.
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
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.