Aa
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
As I have said I would do tx again to get rid of the virus. I have said this many, many times in the past. Today, knowing what I do, I could make a more targeted choice of a triple combo therapy, and likely would have had to spend a lot less time overall on tx...in today's tx world I think there may be some big improvements taking place that will hopefully translate into less post-tx damage. That is exactly why they are trying to eventually eliminate interferon from the mix...its no walk in the park...and it can do considerable damage to some..(or to many depending on what the REAL numbers look like). Its not been studied in much depth or detail, as we know.
As far as me, I did tx twice...first failed...it lasted 15 months and I relapsed. Second was 72 weeks...and it worked. I am not going to go over the month by month dosages and details again, as I have done that many times in the past. I have always said my case is not the typical in many ways...but that likely does not make a huge difference. There have been many cases of similar post-tx problems in those who have tx'ed for 48 weeks or less...and some with much worse damage than my case. It does not make sense to try to negate the problem by pointing out some of us that have done multiple or extended tx'es. The post-tx problems cut across ALL treatment categories...so it is what it is. My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations...so I was still under a protocol.
I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that. Check the old PegIntron inserts and see for yourself.
Also, today many people have failed tx, and have done two, three, four or more tx'es to attain SVR. Its just something that happens. We have to look at the problems for ALL treaters, not throw out an issue because someone did something more or less than the 'typical' tx...whatever THAT might be!!!
I think its TOTALLY legit to discuss this issue very openly and push for research and medical community action.....simultaneous to advocating that people TREAT their HCV, use the tx effectively, and take the necessary risks to get cured. YES...there ARE some risks involved....both during tx...and for some..after tx. It is just what it is. We need open, honest, objective studies to help those in both camps! Those that need to treat, and need support and information. AND those that were somehow damaged during or from treatment. It just makes sense to NOT abandon those that develop problems, and for the medical community and pharmas to try to gloss over the fallout that happens for a particular group. Its called RESPONSIBILITY! and ETHICS! What our medical and drug system in the USA was always supposed to embody. No bitterness here, BTW, just determination to get at the core issue, and get something done. I am a realist, and I continue to work hard, and accomplish many things..IN SPITE of the medical issues. Let's advocate for research, and openness on ALL fronts in the HCV war.
DoubleDose
As far as me, I did tx twice...first failed...it lasted 15 months and I relapsed. Second was 72 weeks...and it worked. I am not going to go over the month by month dosages and details again, as I have done that many times in the past. I have always said my case is not the typical in many ways...but that likely does not make a huge difference. There have been many cases of similar post-tx problems in those who have tx'ed for 48 weeks or less...and some with much worse damage than my case. It does not make sense to try to negate the problem by pointing out some of us that have done multiple or extended tx'es. The post-tx problems cut across ALL treatment categories...so it is what it is. My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations...so I was still under a protocol.
I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that. Check the old PegIntron inserts and see for yourself.
Also, today many people have failed tx, and have done two, three, four or more tx'es to attain SVR. Its just something that happens. We have to look at the problems for ALL treaters, not throw out an issue because someone did something more or less than the 'typical' tx...whatever THAT might be!!!
I think its TOTALLY legit to discuss this issue very openly and push for research and medical community action.....simultaneous to advocating that people TREAT their HCV, use the tx effectively, and take the necessary risks to get cured. YES...there ARE some risks involved....both during tx...and for some..after tx. It is just what it is. We need open, honest, objective studies to help those in both camps! Those that need to treat, and need support and information. AND those that were somehow damaged during or from treatment. It just makes sense to NOT abandon those that develop problems, and for the medical community and pharmas to try to gloss over the fallout that happens for a particular group. Its called RESPONSIBILITY! and ETHICS! What our medical and drug system in the USA was always supposed to embody. No bitterness here, BTW, just determination to get at the core issue, and get something done. I am a realist, and I continue to work hard, and accomplish many things..IN SPITE of the medical issues. Let's advocate for research, and openness on ALL fronts in the HCV war.
DoubleDose
I've seen you post many times about the issue of long term side effects of interferon treatment.
Nobody will deny that some people do have these problems.
And you are right, there should be a place to discuss this.
When I was first diagnosed I was as scared from the horror stories I read online of interferon tx as I was of the phrase 'End Stage Liver Disease'.
It kept me from doing treatment for over a year.
Whether doing tx sooner would have saved me from needing a transplant is unknown.
What I know now, from personal experience is many, many people do treatment, clear the virus and don't post online. People don't tend to go on forums when healthy and happy to talk about how great they feel post tx. They move on with their lives.
This leaves those who are not satisfied to slant the view towards one side.
My only objection with discussing possible long term side effects here, is we attract many newbies, and hearing these complaints when you are already confused, serves only to frighten.
I'm not sure what is the best solution.
But to keep things honest, we need balance.
Nobody will deny that some people do have these problems.
And you are right, there should be a place to discuss this.
When I was first diagnosed I was as scared from the horror stories I read online of interferon tx as I was of the phrase 'End Stage Liver Disease'.
It kept me from doing treatment for over a year.
Whether doing tx sooner would have saved me from needing a transplant is unknown.
What I know now, from personal experience is many, many people do treatment, clear the virus and don't post online. People don't tend to go on forums when healthy and happy to talk about how great they feel post tx. They move on with their lives.
This leaves those who are not satisfied to slant the view towards one side.
My only objection with discussing possible long term side effects here, is we attract many newbies, and hearing these complaints when you are already confused, serves only to frighten.
I'm not sure what is the best solution.
But to keep things honest, we need balance.
DoubleDose: I truly appreciate you taking the time to answer my question. I admire every person who has gone through tx. These are the true pioneers. I cannot imagine doing a tx for 72 weeks. The pharmacueticals make billions of dollars - the ultimate payback to us is to be "cure". To advocate and demand that obtaining a SVR does not come with such a high price during and after tx is what I hope one day is achieved. I support your efforts in this endeavor..... is as you say the responsible and ethical thing to do as we will ultimatelly all benefit from this type of advocacy.
bs1111 sorry for threading on your post. I hope you get better, I am sorry you have sufferred for so long. I wish you good health...
millie
bs1111 sorry for threading on your post. I hope you get better, I am sorry you have sufferred for so long. I wish you good health...
millie
i completed 24 wks of treatment (pegasys and ribavirin) the end of july 2011, genotype 3. I was scared of treatment based on alot of the horror stories and put it off for well over a decade. by the time i finally decided to treat i probably had HCV for over 30 yrs. the treatment was definitely brutal but i did somethings to prepare myself that I think were key and managed to get through. I am happy to say that I am currently SVR negative 6 months after treatment and I am feeling better than I did before treatment. One of the reasons that I finally chose to do treatment was because I was experiencing many of the sypmtoms people complain about as the "long term" side effects of interferon without ever having taken interferon. I was at the docotr's constantly getting checked for RA, lupus, fibromyalgia, lymes, epstein bar. i felt pretty crappy months at a time. i came to realize the HCV was doing a number on me. the proverbial straw was when i went to a wholistic chinese docotr for acupuncture and he told me that this disease would beat me up and i should do the treatment. i cried like a baby that day and then determined to go forward. it took me a year to prep. at the end of treatment i thought for sure i was near death and wondered if i would ever feel better. i really can say that now i have many many more good days than bad. i am back in the gym for the first time in 8 yrs, i beleive that supplements such as chlorella and other forms of cholorophyll (blood cleansers) as well as multiple sources of b vitamins(for nerves, immune booster) has helped me gte back on my feet so quickly.Limiting sugar, processed food I beleive is critical. I still get some anxiety (it was bad during tx) much better but not completely gone.I drink chamomille at night for that as well as calms forte when needed. I wanted to let people out there know this treatment can and does work.
You constantly ignore reality because it doesn't agree with your opinion. And you keep repeating the same old misinformation over and over as though repeating it will make it true.
"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that."
You had no idea that it was a risk to take two very powerful drugs for at least 48 weeks that were designed to kill a virus that replicated in your liver such as PEG-Intron and REBETOL? Seems odd to me.
"My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations."
And who would that be? How about some names. That they would not warn you of the possible side effects and complications of treatment seem very unlikely at best. And these docs are some of the best???
"NOR did the tx drug literature state anything like that. Check the old PegIntron inserts and see for yourself."
Well I did just that. Here is the top of the PegIntron label in a highlighted box in big bold letters...
So everyone can read it themselves...
http://www.accessdata.fda.gov/drugsatfda_docs/label/2001/pegsche080701LB.htm
"Alpha interferons, including PEG-Intron, cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Patients with persistently severe or worsening signs or symptoms of these conditions should be withdrawn from therapy. In many but not all cases these disorders resolve after stopping PEG-Intron therapy. See WARNINGS, ADVERSE REACTIONS.
Use with Ribavirin. Ribavirin may cause birth defects and/or death of the unborn child. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with REBETOL therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen. (See REBETOL package insert for additional information and other warnings)."
Can a warning be any more dramatic then that?
Did you read the last line " In many but not all cases these disorders resolve after stopping PEG-Intron therapy."?
"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that."
Look at the whole label it contains CONTRAINDICATIONS. WARNINGS. PRECAUTIONS. ADVERSE REACTIONS. Laboratory Values.
Take responsibility for your own decisions. Be an adult. Get a life and move on.
Hector
"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that."
You had no idea that it was a risk to take two very powerful drugs for at least 48 weeks that were designed to kill a virus that replicated in your liver such as PEG-Intron and REBETOL? Seems odd to me.
"My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations."
And who would that be? How about some names. That they would not warn you of the possible side effects and complications of treatment seem very unlikely at best. And these docs are some of the best???
"NOR did the tx drug literature state anything like that. Check the old PegIntron inserts and see for yourself."
Well I did just that. Here is the top of the PegIntron label in a highlighted box in big bold letters...
So everyone can read it themselves...
http://www.accessdata.fda.gov/drugsatfda_docs/label/2001/pegsche080701LB.htm
"Alpha interferons, including PEG-Intron, cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Patients with persistently severe or worsening signs or symptoms of these conditions should be withdrawn from therapy. In many but not all cases these disorders resolve after stopping PEG-Intron therapy. See WARNINGS, ADVERSE REACTIONS.
Use with Ribavirin. Ribavirin may cause birth defects and/or death of the unborn child. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with REBETOL therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen. (See REBETOL package insert for additional information and other warnings)."
Can a warning be any more dramatic then that?
Did you read the last line " In many but not all cases these disorders resolve after stopping PEG-Intron therapy."?
"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long. That was not a discussed possibility, NOR did the tx drug literature state anything like that."
Look at the whole label it contains CONTRAINDICATIONS. WARNINGS. PRECAUTIONS. ADVERSE REACTIONS. Laboratory Values.
Take responsibility for your own decisions. Be an adult. Get a life and move on.
Hector
Hi bs, the question of long term effects always brings out some passionate discussion on the fact that the coin has two side. Cure vs risk. Information we should all be more aware of.
Hector brings up a good point regarding interferon. Not an expert, but have you been tested for autoimmune disorders? If this is the problem perhaps it can be controlled?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001819/
Hope you find something that works.
Hector brings up a good point regarding interferon. Not an expert, but have you been tested for autoimmune disorders? If this is the problem perhaps it can be controlled?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001819/
Hope you find something that works.
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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