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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"
Best Answer
I have not yet started tx. However, I have horrible joint pain especially in the knees. I am 41 years old and feel like I'm 74. Hope this helps some.
Good post Ricky. I often think of you when people attribute these issues to "doubledosing".
You don't mention it but you are a genotype 2, which for most folks means that your exposure to interferon is cut in half compared to genotype 1's. Compared to some people who upped the dose, or for some people who extended treatment you may have done 1/3rd. Compared to people who have retreated and failed a few times your exposure could be an even more fractional amount.
I mention this to emphasize; damage may not be related to interferon exposure.
I would also mention, I know people who have treated and interferon reduced their symptoms or even seemed to improve their staging. Comeagain was one of these, but when he re-treated (and succeeded in that attempt I believe) he was saddled with issues post TX.
My point is that the same drugs on the same person may have differing effects each time.
It is also worth mentioning that many/most people who have treated and retreated have NOT had serious issues. I think that accounts for some of the strong feeling that the drugs, while powerful have a degree of safeness. If one is willing to "go back to the well", I can't think of a more convincing way of proving one's conviction; words being one thing, and actions another.
I finally want to float out that possibility for people to consider; I think we tend to dismiss peoples pain. We can't see it, we see these people write coherent convincing posts and we figure that they can't be too bad. We have no real tools for understanding how dramatically their life has been altered.
I really wonder if we could live a day in their shoes if we might reconsider their pain, their issues and gain a deeper understanding or compassion for their plight.
Why do these threads cause such disharmony?
The answer is that they may prevent people from treating, who then might die from liver disease. They may progress in a few years and not be able to treat.
Is this a reasonable description of the issue?
For me, the only people who might advance to ESLD in a few years are cirrhotics, and probably people who are borderline compensating/decompensating.
This is a group of people who in all likelihood cannot stand to do SOC and triple therapy would be even harder. Treating after all could push them into decompensation. These are also probably that group with the most remote chance of success since they are cirrhotic and many may also be past TX failure partial, non or null responders.
However, this is a group of people who *might* be able to treat successfully with DDA's and riba, for instance. (in a few years)
Conversely, the people who are stage 1, 2 & 3 may indeed be able to wait 3 years. The stats that I read are that with cirrhosis the death rate is about 5% per year. I believe that the majority of cirrhotics live over 10 years with cirrhosis.
I am sometimes a little surprised that people are told they can expect to jump a few stages in a matter of a few years on this forum, and it is never questioned as normal or representative of the aggregate of infected.
Long term sides caused by interferon...... some people end up on FMLA and lose their jobs, sometimes their houses at a time in their life when they cannot start over. They can face life issues which extend beyond health issues. Even people who improve over a few years may gain their health but lose other things in the process.
Like a veteran that comes home, unable to fit in, or with maladies no one understands or wants to hear about.......... these people who have been injured deserve more compassion and less anger directed at them. We already have more than enough judging by some doctors, co-workers or society.
To some extent, I think it is the fault of the forum; interferon issues must co-exist side by side with people who are treating. Who thinks this is a GREAT idea?
willy
You don't mention it but you are a genotype 2, which for most folks means that your exposure to interferon is cut in half compared to genotype 1's. Compared to some people who upped the dose, or for some people who extended treatment you may have done 1/3rd. Compared to people who have retreated and failed a few times your exposure could be an even more fractional amount.
I mention this to emphasize; damage may not be related to interferon exposure.
I would also mention, I know people who have treated and interferon reduced their symptoms or even seemed to improve their staging. Comeagain was one of these, but when he re-treated (and succeeded in that attempt I believe) he was saddled with issues post TX.
My point is that the same drugs on the same person may have differing effects each time.
It is also worth mentioning that many/most people who have treated and retreated have NOT had serious issues. I think that accounts for some of the strong feeling that the drugs, while powerful have a degree of safeness. If one is willing to "go back to the well", I can't think of a more convincing way of proving one's conviction; words being one thing, and actions another.
I finally want to float out that possibility for people to consider; I think we tend to dismiss peoples pain. We can't see it, we see these people write coherent convincing posts and we figure that they can't be too bad. We have no real tools for understanding how dramatically their life has been altered.
I really wonder if we could live a day in their shoes if we might reconsider their pain, their issues and gain a deeper understanding or compassion for their plight.
Why do these threads cause such disharmony?
The answer is that they may prevent people from treating, who then might die from liver disease. They may progress in a few years and not be able to treat.
Is this a reasonable description of the issue?
For me, the only people who might advance to ESLD in a few years are cirrhotics, and probably people who are borderline compensating/decompensating.
This is a group of people who in all likelihood cannot stand to do SOC and triple therapy would be even harder. Treating after all could push them into decompensation. These are also probably that group with the most remote chance of success since they are cirrhotic and many may also be past TX failure partial, non or null responders.
However, this is a group of people who *might* be able to treat successfully with DDA's and riba, for instance. (in a few years)
Conversely, the people who are stage 1, 2 & 3 may indeed be able to wait 3 years. The stats that I read are that with cirrhosis the death rate is about 5% per year. I believe that the majority of cirrhotics live over 10 years with cirrhosis.
I am sometimes a little surprised that people are told they can expect to jump a few stages in a matter of a few years on this forum, and it is never questioned as normal or representative of the aggregate of infected.
Long term sides caused by interferon...... some people end up on FMLA and lose their jobs, sometimes their houses at a time in their life when they cannot start over. They can face life issues which extend beyond health issues. Even people who improve over a few years may gain their health but lose other things in the process.
Like a veteran that comes home, unable to fit in, or with maladies no one understands or wants to hear about.......... these people who have been injured deserve more compassion and less anger directed at them. We already have more than enough judging by some doctors, co-workers or society.
To some extent, I think it is the fault of the forum; interferon issues must co-exist side by side with people who are treating. Who thinks this is a GREAT idea?
willy
Hi everyone -
While I know this is a heated topic, please keep the personal attacks out of it. This thread has some great points, and it would be a shame to have to close it.
Thanks,
Emily
While I know this is a heated topic, please keep the personal attacks out of it. This thread has some great points, and it would be a shame to have to close it.
Thanks,
Emily
Thanks and Great Post also.
“I mention this to emphasize; damage may not be related to interferon exposure.”
Neither my GP nor I have any doubts the damage was caused by Interferon/Riba exposure.
Prior to tx I had none of these symptoms. I will admit, I may have caused some of this damage due to stubbornness. Due to the severity of the sx, at about week 16 my Gastro gave me the ultimatum to choose between quitting my job or tx. I told him I could not quit my job so I would have to stop tx. He “Zombied” me out on Lortab, Ambian, Xanax, and some kind of Anti-Psychotic. Even though I was a Zombie, I was able to complete the final 8 weeks. Looking back, I think I should have listened to him and chose between the 2. G2, RVR, and at 16 weeks, the odds for SVR were in my favor. I am only speaking for myself and am in no way suggesting anyone stop tx early. By quitting my job, I would not have put as much strain on my body. It is all hindsight and speculation. What is done is done and Coulda, Shoulda, Woulda, is irrelevant. The one thing I am sure of is this damage was caused by Interferon/Riba exposure. If I had to do it all over again and knowing what I know now, I probably would still treat. I would just do things different.
“I mention this to emphasize; damage may not be related to interferon exposure.”
Neither my GP nor I have any doubts the damage was caused by Interferon/Riba exposure.
Prior to tx I had none of these symptoms. I will admit, I may have caused some of this damage due to stubbornness. Due to the severity of the sx, at about week 16 my Gastro gave me the ultimatum to choose between quitting my job or tx. I told him I could not quit my job so I would have to stop tx. He “Zombied” me out on Lortab, Ambian, Xanax, and some kind of Anti-Psychotic. Even though I was a Zombie, I was able to complete the final 8 weeks. Looking back, I think I should have listened to him and chose between the 2. G2, RVR, and at 16 weeks, the odds for SVR were in my favor. I am only speaking for myself and am in no way suggesting anyone stop tx early. By quitting my job, I would not have put as much strain on my body. It is all hindsight and speculation. What is done is done and Coulda, Shoulda, Woulda, is irrelevant. The one thing I am sure of is this damage was caused by Interferon/Riba exposure. If I had to do it all over again and knowing what I know now, I probably would still treat. I would just do things different.
Ricky : glad to hear you are doing better and hopfully continue to improve..
Will
Double dose:
To Hector:
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. . Who are YOU to contradict what many of us have been told. Were you THERE?
Can YOU read??? Thanks for your helpful feedback buddy. You sound like a real happy fellow.
Absoluely unbelivable......
Will
Double dose:
To Hector:
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. . Who are YOU to contradict what many of us have been told. Were you THERE?
Can YOU read??? Thanks for your helpful feedback buddy. You sound like a real happy fellow.
Absoluely unbelivable......
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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