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Anyone else have joint problems 10 year post Hep C treament?
I was on "experimental" Interferron and riboviron treatment for 2 years in 1999-2001 and now have no cartilage in my shoulders and have chronic joint pain. I need bilateral shoulder and hip replacements and have acute lower spine pain which causes bilateral sciatica. It seems strange all my joints are breaking down at once. At 55 years old, my Dr's comment I am young to need joint replacements. My Doctors don't seem to know what has caused this condition and one said it was probably congenital??? I think it is related to my Hep C treament because that made all my cartilage and skin hurt at the time. Has anyone else had these symptoms? FYI no evidence of virus for 10 years now even tho my chemo treatment was called a "failure"
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So I guess you are saying we all should expect to potentially end up with crippling, life altering side effects after completing treatment! It sounds to me like you argue both sides of the case....being upset if someone actually has the nerve to discuss their long term after-effects from tx on the forum,,,and then acting scathingly angry is anyone complains about ending up with major problems because..I guess from what you are saying...we ALL should expect this exact potential outcome. AND, it seems, we should all just keep our mouths shut...according to YOU. You sound to me like someone who just doesn't want to hear other people's opinions. If you don't like my comments, fine..tell us about your OWN experiences....and I will tell mine. I think MANY who end up with these post-tx problems are surprised, and have been told pretty bluntly during treatment that the sx will fade away in short order after completing treatment. At least I know I have seen many state that same thing. Who are YOU to contradict what many of us have been told. Were you THERE?
Also, the warnings on the inserts do not say anything about developing new and different problems AFTER ending tx...only that some issues may not resolve. Can YOU read??? Thanks for your helpful feedback buddy. You sound like a real happy fellow.
Also, the warnings on the inserts do not say anything about developing new and different problems AFTER ending tx...only that some issues may not resolve. Can YOU read??? Thanks for your helpful feedback buddy. You sound like a real happy fellow.
Both DD & Hector make good points. We all should know that there could be permanent side effects with these TX drugs. Each person has to weigh out the benefit vs the risk. Not everyone ends up with permanent SX. The drug companies aren't trying to hide anything. It clearly states the risks in the pamphlet that comes with the drug. It is not all their fault doctors don't provide feedback from patients years after TX. Even if their insert said there is definite "permanent" SX people would still treat. Once again weighing out muscle aches, etc vs liver disease. I would take life long muscle aches over LD any day. I'm saying this from my own personal experience. I'm about 2 years post TX and still feel like crap much of the time. But I knew this was a possibility if I wanted to rid myself of HCV.
I believe the longer someone is on INF the worse long term health issues. This is why doing 24 weeks with the new drugs is most important.
I believe the longer someone is on INF the worse long term health issues. This is why doing 24 weeks with the new drugs is most important.
Very good points copyman. When someone comes on this forum waving the red flag cautioning everyone about the collateral damage remaining after trt, they should also include their length of trt and dose modifications if they took place. If someone is on these challenging meds for over 2 1/2 years and increased their dose of Inf/Riba, possibly doubling it (?), this will increase the potential for permanent sides. How could they not realize this?
When new members come to the forum, they don't understand the trt history of those posting. They just read and digest the information presented, sometimes trying to make difficult decisions on if and when to trt. I believe your situation and lalupa's is much more common, although not frequently reported and posted since it's the norm.
Your last statement is so true, but unfortunately for those that need to trt 2, 3, 4 times, they need to make tough decisions. Hopefully other options will be available soon.
When new members come to the forum, they don't understand the trt history of those posting. They just read and digest the information presented, sometimes trying to make difficult decisions on if and when to trt. I believe your situation and lalupa's is much more common, although not frequently reported and posted since it's the norm.
Your last statement is so true, but unfortunately for those that need to trt 2, 3, 4 times, they need to make tough decisions. Hopefully other options will be available soon.
Education. History. Balance. Honesty. Compassion. Understanding.
I'm not sure if they all mean the same thing to different people, but I think that's what this forum is supposed to be about.
Certainly we all come from a different place and have differing opinions, but respecting where everyone's viewpoints come in is a two-way street. Let's not cut each other off at the pass.
There's no question it's not one size fits all here, but certainly the goal is to rid the virus with as little collateral as possible. For folks like bs1111 who may suffer from long term symptoms that they feel is a result of treatment, I hope they can find relief... if not through their treatment doctors, then perhaps from some other specialty.
Because my husband paid the ultimate price, his life, for not being able to cure his hcv in time, my view is rather singular -- I would knowingly take on whatever side effects the medication might have given him, but the choice was not ours to make. It's a gamble... whether it's your liver, your health, or your life is anyone's guess... it's up to each of us to pick our poison and live graciously with it afterwards, isn't it?
God bless all past and current HCV-ers...
I'm not sure if they all mean the same thing to different people, but I think that's what this forum is supposed to be about.
Certainly we all come from a different place and have differing opinions, but respecting where everyone's viewpoints come in is a two-way street. Let's not cut each other off at the pass.
There's no question it's not one size fits all here, but certainly the goal is to rid the virus with as little collateral as possible. For folks like bs1111 who may suffer from long term symptoms that they feel is a result of treatment, I hope they can find relief... if not through their treatment doctors, then perhaps from some other specialty.
Because my husband paid the ultimate price, his life, for not being able to cure his hcv in time, my view is rather singular -- I would knowingly take on whatever side effects the medication might have given him, but the choice was not ours to make. It's a gamble... whether it's your liver, your health, or your life is anyone's guess... it's up to each of us to pick our poison and live graciously with it afterwards, isn't it?
God bless all past and current HCV-ers...
Agree that post-tx sx are a valid topic of discussion and that opinions need to be put into context, regardless how teidious that can be sometimes.
I was fortunate to have:
1)examples of both people who had waited too long to tx and/or had bad post-tx sx, to personally gauge the risks before txing.
2)a large print highly detailed large print package insert to study (Oct 2002)
3)Tx'd with minimal damage, but good odds to clear. Ignored my gastro's protocol on how long /how intensedly to tx' got lucky, SVRd
4) Have come to the conclusion that it doesn't matter whether my post-tx health problems relate to carrying the virus for 30 years, my exposure to IFN, or pre-existing conditions/age/ genetics. I deal.
And I hang around here to see what's new.
I was fortunate to have:
1)examples of both people who had waited too long to tx and/or had bad post-tx sx, to personally gauge the risks before txing.
2)a large print highly detailed large print package insert to study (Oct 2002)
3)Tx'd with minimal damage, but good odds to clear. Ignored my gastro's protocol on how long /how intensedly to tx' got lucky, SVRd
4) Have come to the conclusion that it doesn't matter whether my post-tx health problems relate to carrying the virus for 30 years, my exposure to IFN, or pre-existing conditions/age/ genetics. I deal.
And I hang around here to see what's new.
This is a long Post for me but, I think it’s time to put my 2 cents in.
I usually don’t post much on threads about Long Term/Permanent Post Tx damage. I’m torn between failing to educate people of what harm tx could possibly cause and scaring some away from treating. As most of us know, when we were first dx we searched the Internet for knowledge. We would read 10 positive things then read 1 negative and forget all about the 10 positive.
For me, it’s been about 4 years now (+-) and it has been a slow uphill battle but one I am progressing.
I can look back at where I was at about 3 years ago when I just didn’t care anymore if I lived or died, I just wanted it over with, to now enjoying life.
I think I was put on every AD known to man but they just made things worse.
My body was in constant pain which led to an addiction to pain pills. About a year ago I realized I wasn’t in as much pain as I originally was and quit the Lortabs cold turkey (something I would never won’t to go through again).
My mind was sharp. I could read a set of Plans/ Spec. Book and know them by heart. After tx, I was dependant on Highlighters and Notes because I couldn’t remember anything.
Now 4 years later, my mind is not as sharp as it was but I can see major improvement.
My body still aches but the pain is tolerable. There are those times when I really need a Lortab but know it’s best for me to stay away from them.
The Darkness is almost gone but I still take Xanax for Anxiety Attacks. I’m not concerned about Xanax addiction because I don’t like them so I only take them when needed.
I used to be on the go constantly now I am a “Homebody” but I kind of like it.
Some people blame it on age but even my own GP (I’ve seen for decades) said, “This is not caused by age. People don’t naturally age that fast.”
I know I will never be the same as I was Pre-Tx but that may also be a good thing. A 54 year old “Burning the Candle at Both Ends” doesn’t have much time left before the expiration date.
I wish there was some way this topic could be discussed without it turning into a p!ssing contest but, I don’t see that ever happening.
I guess to some it up. Yes, there is a possibility it may be a long recovery and there is the possibility there may be permanent damage. People like me are not the norm so; don’t let 1 not so pleasant testimony wipe out 10 positive ones.
R. Glass
I usually don’t post much on threads about Long Term/Permanent Post Tx damage. I’m torn between failing to educate people of what harm tx could possibly cause and scaring some away from treating. As most of us know, when we were first dx we searched the Internet for knowledge. We would read 10 positive things then read 1 negative and forget all about the 10 positive.
For me, it’s been about 4 years now (+-) and it has been a slow uphill battle but one I am progressing.
I can look back at where I was at about 3 years ago when I just didn’t care anymore if I lived or died, I just wanted it over with, to now enjoying life.
I think I was put on every AD known to man but they just made things worse.
My body was in constant pain which led to an addiction to pain pills. About a year ago I realized I wasn’t in as much pain as I originally was and quit the Lortabs cold turkey (something I would never won’t to go through again).
My mind was sharp. I could read a set of Plans/ Spec. Book and know them by heart. After tx, I was dependant on Highlighters and Notes because I couldn’t remember anything.
Now 4 years later, my mind is not as sharp as it was but I can see major improvement.
My body still aches but the pain is tolerable. There are those times when I really need a Lortab but know it’s best for me to stay away from them.
The Darkness is almost gone but I still take Xanax for Anxiety Attacks. I’m not concerned about Xanax addiction because I don’t like them so I only take them when needed.
I used to be on the go constantly now I am a “Homebody” but I kind of like it.
Some people blame it on age but even my own GP (I’ve seen for decades) said, “This is not caused by age. People don’t naturally age that fast.”
I know I will never be the same as I was Pre-Tx but that may also be a good thing. A 54 year old “Burning the Candle at Both Ends” doesn’t have much time left before the expiration date.
I wish there was some way this topic could be discussed without it turning into a p!ssing contest but, I don’t see that ever happening.
I guess to some it up. Yes, there is a possibility it may be a long recovery and there is the possibility there may be permanent damage. People like me are not the norm so; don’t let 1 not so pleasant testimony wipe out 10 positive ones.
R. Glass
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You will find that in other threads, there was a pretty large scale survey done a few years ago, on post tx experiences. Interestingly, more SVR's felt worse after tx, than those that felt better. The symptoms listed that began AFTER tx ended included the problems that you discuss...along with weakness, fatigue, brain fog, and a whole host of CNS related issues.
Just keep communicating your problems, and keep documenting them with your doctors. I have had many specialized tests over the years, with a wide range of specialized doctors, trying to figure out what is wrong. Most of my doctors just plainly admit that the interferon likely 'changed things' for my body and central nervous system. There are certainly plenty of our cases out there. Many on the forum don't want to hear about it though, or see the issue discussed. Your post-tx problems are not important compared to the thought of possibly 'scaring' someone who is considering treatment. Oh well.....
DoubleDose