Post treatment symptoms of Pegulated Interferon\Raboviron

[PeggyE]

My wife has succesfully completed 48 weeks of treatment for HepC using the Pegulated Interferon\Raboviron combination.About the secound month of treatment joint pains developed in her hips and elbows.Treatment finished in January 2006 and Blood tests in July indicated no virus detected. She has returned to work in September on a limited basis.Her pain in hands,hips and elbows has been increasing at an alarming rate. She has been in contact with her doctor regularly, who has been very good in doing tests for different arthritis's which turn up non detectable.She will see an athritic specialist in London in November.  To date I have found very little on Post treatment effects\symptoms. My question...does this treatment exaserbate arthirtic symptoms in patients post treatment?

[SoCal Lady]

Re:  Some will try to claim that these problems cropping up after tx are a 'coincidence', or are due to some sort of rapid aging.

How ridiculous to keep saying this.  The point was that since such symptoms can be seen in the aging process, it must be difficult to definitively link them to the effects of interferon treatment.  But Kalio supplied you with research that supports your suspicions, even though she/he was treated rudely on the other thread.

Why don't you drop the unreasonable bitterness you hold?  It can't be good for your health....

[DoubleDose]

Yes, many of us on the forum have experienced a range of post-tx problems, including joint pains, fatigue, sun-sensitivity, rashes, autoimmune problems, etc.  I will post a link below, which was kindly included below by Kalio in another thread, which is a large survey on post-tx symptoms.  If you complete the survey (it is very easy and takes little time)you will then be able to view the results of the survey, and a large number of individual comments by the participants describing their own particular post-tx experiences.  Here is the link:

http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp  

Disturbing symptoms that emerge after completing tx are a 'hot' subject on this forum currently.  Some will try to claim that these problems cropping up after tx are a 'coincidence', or are due to some sort of rapid aging.  Of course those people do not have these symptoms!  I think to all who have experienced these very disturbing symptoms on the heels of therapy, it is very clear and obvious that there is a connection to therapy.  The pattern seems to run through at least 35% of the overall post-tx group who took the survey.  

I would like to see even larger surveys done, across the entire treatment population.  I will bet the results are essentially the same.

DoubleDose

[Beachbunny50]

Please repost site I got an ad over half the address. Thanks I'm 10+ years post treatment peg interferon/ribivon and I went to bed for 6 months of 48 month treatment.  I'm still in bed. It's been a nightmare. I have no quality of life and now my depression out there I can't even go outside anymore. I wasn't warned of any lasting effects  if I had just known. People are sick this stuff is awful. I barely had a viral load and a perfect liver I wish I'd been given a choice of natural therapy but I wasn't given a choice I trusted my dr I knew my dr. But I cant find a dr who can treat all 13 of my chronic illnesses. Please add address.

[giddyup]

I had hip and leg pain pre and post tx. I'm still on pain meds. You might want to ask her doctor about Cryoglobulinemia a hepc related blood disease which can cause arthritic type pain. Sorry about the pain ,I feel for her.

[Kalio1]

What is needed is the application of scientific method to the HYPOTHESIS that tx causes these conditions. Evidence based medicine is based(since the mid 1800's at least )on scientific method not patient's symptoms. ALL the people who have these symptoms form the basis for the hypothesis, the FIRST STEP in discovering IF there is a connection. It's like you just ignore how we arrive at "facts" in medicine and say " well I have these symptoms and so do 10 of my friends so I will ignore all the other possible variables because I took these drugs! It must be them!" If people here even mention the various variables to you you flip out and act as if it is outrageous we would mention the obvious, aging, depression, underlying or previous illnesses, unknown variables, the list goes on.

The survey helps to gather the evidence so the process can then be undertaken to try to establish the MEDICAL CAUSAL LINK.


This is basic medicine! I get frustrated that you try to personalize this, or claim facts where they don't exist. I didn't invent evidence based medicine, I thought scientific method was something we all learned in like the 8th grade. Go be mad at Pasteur or someone who helped to bring medicine AWAY from this type of thinking! People used to think the devil made them sick too, I guess since a lot of people thought that, it must be true! sheesh.

What has been proven, by scientific method, is that Interferon alpha 2b causes a reduction in fibrosis and lowers the risk of heptocellular cancer for a substantial number of patients to name just a few of the HOST of BENEFITS it has long term on patients. And that's a FACT.

[Kalio1]

By the way, you can't just make up statistics like you do "35% have these problems" was what you said I believe, what hat did you pull those stats out of?


This type of thing is why doctors steer their patients AWAY from the net because it creates unfounded and unnecessary fear in newly diagnosed patients and a lot of the "information" is not correct or like these statistics, completely made up. It decreases our credibility.

[DoubleDose]

The 35% statistic came from the survey you linked.

I do not know why you continue to foam at the mouth.  Many people have unexplained symptoms that begin after tx, and are out of the ordinary, and very disturbing symptoms.  35% according to the survey felt WORSE AFTER tx.  The individual details themselves were pretty graphic.  

Please give it a rest.  We were not talking to you, to begin with.  You are the only one protesting so loudly, and you are not even a member of the affected group, so how could you know what we are experiencing.

If you stopped trying to pontificate so much, on issues you have little scientific support for yourself, you would find less critical responses aimed at you.  Did you read all the replies to your diatribes below....the number of people in total agreement about the post-tx issues.  

I am sure you will negate their experiences and interpretations as well.

Lets get off the subject, because I do not need your concurrence at all.  I understand the issues pretty well already.

DoubleDose

[Kalio1]

You are the one doing the "foaming at the mouth" because you have only your word and the word of others claiming the same thing but no facts to back up your claims. I notice you have no argument to pose against the widely accepted basis of modern EVIDENCE BASED medicine, this is no suprise because there IS no argument to pose.
I hope people who read your claims realize that is what they are, claims. I hope they also try to verify what you say before believing you and it doesnt turn them away from treating when they are already very fearful because they will find out soon enough if they research it that there is no validity to your claims and that so far, all we have is a group of people saying it is so but no science to back it up ie. legitimate studies using scientific METHOD. I assume you know that medicine is BASED on scientific method...
Interferon's long term benefits ARE factually based however.

I will continue to counter your long winded claims as long as you continue to make them so people can be made aware. Best thing patients can do is speak to their doctors who are educated in evidence based medicine and hopefully they won't go by internet claims such as yours to guide their health care.


there is no way your 35% stat can be legitimized by the survey because the survey only takes into account those claiming this problem and doesn't include those that do NOT have any symptoms. In other words, you made up your statistics.

You have never posted even ONE study to back up your exhaustive claim that tx for Hep C causes long term side effects, the reason for that is obvious, they don't exist.

[Beachbunny50]

Well 11 years of post interferon pain and absolute hell they are too many people with too many of the same problems do you not remember in the early 80s they tried to treat hiv with interferon and it killed the patients. I very happy for those who made it through but I understand about those who's lives just end d with that crap. I was reading about treatment for fatigue syndrome they using interferon to treat it. And interferon causes fatigue syndrome. Go figure

[ricochete]

Thought I would post a link to a study:

Hepatology July 2004 Vol 40 Issue 1

However, the excellent treatment success may be accompanied by IFN-related side effects in some patients.

http://www.natap.org/2004/HCV/080404_06.htm

[DoubleDose]

Thank you very much for your input.  We need more people to speak up, and clearly articulate the issues that have come into being only after they have completed treatment.  I also do believe that many doctors are beginning to take note of these problems, and are beginning to document them in their writings and data collection.  Several prominent Johns Hopkins doctors that I have consulted with in the past two years have made it clear that this is uncharted territory, and they have seen many examples in the recent past of residual interferon damage.  One doctor went as far as to say that interferon can change cell and system function radically for many generations of cell regeneration.  He said the process could take years to work through, or could conceivably become permanent in some.  

I sure do not want to sound like the lone sentinel in the woods crying 'wolf'...because I really do not believe that is the case.  This wolf is real, and it bites!

I love to hear all input from those that have treated...those with no after-effects at all (gives us all hope) and those with problems as well.  Comparing notes is helpful, and provides sympathetic understanding that we share similar problems.

Thanks again for your additional info.

DD

[Kalio1]

I never said it isn't possible, tx is only ONE of the possibilities.

Im really not inclined to do YOUR research for you yet again, but since I am such a generous soul once again I will provide you with info. The only long term study on interferon I find shows it can cause DEPRESSION, which I think is a likely cause of these problems people are having. It certainly is one of the VARIABLES. These patients were all treated with AD's to solve the issues.

http://psy.psychiatryonline.org/cgi/reprint/40/6/510.pdf


Here are a couple links to studies showing just a few of the long term BENEFITS of Interferon

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9716581&dopt=Abstract

http://www.annals.org/cgi/content/abstract/127/10/875




Now I have provided you with the survey, which you didn't bother to find on your own, (which I found by typing long term effects of Interferon, not too complicated) and provided you with a long term study showing it can cause depression, something most everyone already knows, and a couple of studies showing the BENEFITS of long term Interferon use. There are more out there, I just don't feel like doing your homework any more. You still have not provided one fact to back your position up. All you say is " I say it is true and others say it is true therefore it's true"
gimme a break.

this is why I normally ignore your bogus mile long posts claiming post tx long term issues as fact, you are not willing to accept the facts as they are, that we are in the HYPOTHESIS stage of finding out if it is possibly linked to Interferon use or not and instead run around claiming it as fact with nothing to back it up and getting nasty and start name calling like a playground bully.

[Beachbunny50]

This is old there's a lot more information out there now it's 17 it's now called chronic interferon syndrome

[DoubleDose]

Again, you are not listening.  I do not know what else to say.  
You seem determined to defend a position which clearly is being disputed by the many people who have these post-tx issues.  I think you will see over the next few years, as longer term studies are diligently performed, (IF they are performed!) that the issues are real, and are directly related to the treatment.  I never once said that there were formal studies supporting this information.  It is obvious that the studies have been sorely lacking.  This is why so many people are doing their own surveys, and also speaking up on all the available forums.  But again, you seem to think you know more than the many bright, honest people out there who are discussing their problems.  

You have unilaterally decided that people who have post-tx autoimmune issues, airway & lung issues, neuropathy, arthritis, vision problems, thyroid dysfunction, erectile dysfunction etc. etc. are all due to depression.  I think you are dead wrong!
ALL of these are documented potential side effects of interferon, in the literature.  Its just that the literature does not indicate that the problems might persist long term in a significant group of patients.

How are you so certain that the interferon has nothing to do with these problems again????  And how do you know more than doctors who are now beginning to describe these problems from interferon???  Because you want to believe it.  And because you seem to be unable to accept anything but your own opinion.  You can't even accept what numerous other people are telling you.  

Even the recent widely publicized articles on long term problems in cancer patients from chemotherapy (that last up to 10 years!) don't even register a blip on your radar, you are so intent on being right, rather than delving for the real truth.  I just do not get where you are coming from.  You cling to your beliefs as if you just HAVE TO be right.

I do not think at this point that if five hundred people posted regarding their post-tx related problems that you would pay it any mind.  YOU have decided that everyone else is mistaken, and you have the answers.  Mighty huge ego if you ask me.  (or maybe pretty small).

DD

[DoubleDose]

What you don't seem to understand is that I am speaking for myself...my own personal experience.  So are the others on this forum who have experienced post-tx symptoms that are out of the ordinary.  Jim, Revenire, Bobbyullc, Ina, and a host of others have weighed in with their personal experiences.

All you can do is to deny that anyone has any proof.  What in the heck are you talking about?  You sound self-righteous, and half-cocked in your diatribes.  We are only discussing our personal experiences.  YOU are the one trying to claim that our comments are not valid.  The survey that YOU linked provided the scientific basis for stating that 35% of the population surveyed felt they were worse off, symptom-wise, after therapy.  

I understand science very well, and have post-graduate education in scientific and business related areas...but I do not beat people over the head with it ever!  You try to sound like you are some scientific authority, when in fact all you are really doing is disagreeing with the comments and experiences that forum members have expressed.  Where do you get off by contradicting our personal experience?  And then claiming to have 'scientific evidence' that our issues are not valid?

Your survey should have tipped you off to the fact that a SIGNIFICANT population of the post-tx group taking the survey felt that the tx had caused a deterioration in the quality of their lives.  I truly do not understand your rationale, your logic, or your motivations in trying to contradict the objective data presented in the survey.  How do you think that the drug companies, and doctors collect their data regarding people's experiences with therapies and drugs?  That's right...they do a survey...and they collect the comments made by the participants...and then they publish that data, as scientific support for their findings.

You are the one that seems to have little understanding of scientific method and data collection.  Also there are two major approcahes to determining whether an idea, assumption, or theory is valid...by using either inductive or deductive approaches.  
This forum allows for the daily observation of quite a bit of feedback, experiences, and yes 'data', which all can be utilized to induce (inductive logic) some assumptions.  

And from what we all have been reading from the members of the forum, there is no doubt that a portion of our members, maybe even a significant number of our members, have experienced a variety of disturbing, and often new, symptoms right after completing therapy.  That is a fact!  What causes this syndrome is open to exploration.  You do not seem to be able to discriminate between a fact and an opinion.  And you sure have PLENTY of opinions!

I still wonder why you have such personal investment in denying that therapy might cause physical problems or after-effects in some treaters.  What is your reason for trying to deny what OTHER people have experienced and observed?  We are just trying to understand the mechanism for our problems after therapy.  You seem to be on a witch hunt!  Anyone who thinks interferon can induce problematic post-tx problems is just plain wrong...or lying, I assume.  Do you think we are ALL making these things up?  Do you think the survey responders were lying???

I do not get it.  You seem hell bent on slamming your point of view over all of our heads.  And you are WRONG to boot!

DD

[DoubleDose]

You state:  You have never posted even ONE study to back up your exhaustive claim that tx for Hep C causes long term side effects, the reason for that is obvious, they don't exist.

My response is that you constantly twist my words and fabricate your own intrepretation of what you think I am saying.  I have said that I believe Interferon therapy is capable of producing after-effects, problems, symptoms, in SOME people, and have used my own experience as an example.  I have never said:  Interferon causes long-term side effects, period, in everyone.  You hear what you want to hear, and make up what you don't.

Please do yourself a favor, and re-read what many of our other members have stated about their own post-tx experiences.  Listen to what they are saying.  If you do not believe them as well, then one by one reply to THEIR claims by stating that they are mistaken in what they have said.  Tell them that you KNOW interferon could not be the cause of any of their problems.
And then Dr. Kalio, please tell us how you are sure this is the case.  Please do tell us.

How many long term studies have you read lately regarding specifically : the long term after-effects of interferon treaters???  Can you publish them?  I WANT to read them.

Because my rheumatologist claims that the studies they (his group, and other rheumatologists) have done on interferon use  (in people with MS and HCV) indicate that long term after effects are pretty common!  In fact he is now treating a number of post-tx patients who have developed autoimmune syndromes after completing interferon therapy.

Who knows what percentage of us develop these problems?  You do not want to know, or discuss the possibility, it seems.  That is where I take great issue with your pseudo-scientific ramblings, and self-righteous proclamations.  Where are all the studies you speak of??????????

DoubleDose

[Kalio1]

you say


"Many people have unexplained symptoms that begin after tx, and are out of the ordinary, and very disturbing symptoms"

and go on to say:

"I am sure you will negate their experiences and interpretations as well."


I have NEVER said people don't have the symptoms, you bang this drum to try to make it appear as if I dont think people are suffering or to try to make me appear insensitive to their troubles rather than address the point I make. That is a common tactic for those who have no basis for their argument so I am not suprised you would stoop that low, it's always where you go on this topic. There is no question in my mind that people have the symptoms, that is not even the ISSUE. The problem is we do NOT know WHAT is CAUSING these situations due to not having ISOLATED THE VARIABLES. You just reject out of hand the numerous variables that I and others point out to you.
Fair play dictates you attack the argument not the person but you can't do that because you don't have one, so you attack me. I think you believe if you repeat your position enough times then it magically will become fact. The sad thing is, some poor soul might believe your bogus "facts."



FYI
Anyone can comment on any thread, you are not the arbiter here of who can comment on what. If you dont like me refuting your claims, then make FACTUALLY BASED claims and you won't have this problem.

[DoubleDose]

I did make factually based claims..my own experiences.  The other facts were that I pointed out what other members have said on the forum.  The other facts were the findings of your survey.  Just which facts were you missing?  I am just stating what seems clear to many of us.  YOU seem to be filled with some sort of obsession in denying what we have experienced.  I am sure the medical community will finally figure out what is going on with the post-treatment problems...and maybe we will get some treatments for our problems.  That is what I am interested in exploring.  

You can't solve a problem until you recognize it!  And until recently the post-interferon problems have been relatively overlooked, or just plain ignored by much of the medical community.  Now people are speaking up.  Hence the origin of survey that you linked.   Did you ever stop to wonder if maybe, just maybe, the drug companies are NOT extremely motivated to do long term studies to find out if their drugs could cause serious problems?  Naaaah, they couldn't think like that, could they????

Nowm, where are all those post-tx interferon after-effects studies you were going to post?  I just want to see your scientific evidence that there are definitely NO long term symptoms or negative after-effects caused by interferon therapy in any of us.  Your studies will certainly make us all rest a lot more easily.

DD

[ricochete]

I am 22 months post treatment, I still have bone and muscle pain, headaches, fatigue, exercise intolerance, interferon induced small airway disease. My doctor told me that the small airway disease is interferon induced based on many studies reporting this. But  don't have studies that support my other problems, although I desperately need them so that I can believe myself. If I don't get the studies then I think I may be lying!

I believe that there are many many people who suffer long term effects of treatment, not based on many studies I have read (I am a medical researcher) but based on all the experiences I have read. More and more people are starting to be honest about this issue despite some of the angry rhetoric coming from certain people (is there a purpose to this or is the truth too difficult? or some people just like to be angry & argue?)

So far even cancer patients have had a lot of problems getting the issue of their lingering problems such as chemo brain explained. HCV treatment is a lot newer, and neither are real priorities in medical research largely given that funding is granted to people who are going to present studies that will make the grantor money.

[SoCal Lady]

Re:
You have unilaterally decided that people who have post-tx autoimmune issues, airway & lung issues, neuropathy, arthritis, vision problems, thyroid dysfunction, erectile dysfunction etc. etc. are all due to depression.

This was not said.  Kalio said that depression was the only documented long-term effect.

Re:
How are you so certain that the interferon has nothing to do with these problems again????

This was not said.  Kalio said that research has not yet substantiated a direct cause and effect between interferon treatment and the symptoms you describe.  There is certainly a link, since many people apparently have these symptoms, however, it appears that little research has been done to prove that interferon is responsible for them, or all of them.

Perhaps long-term poor liver function predisposes symptoms in some people, and interferon treatment is an assault on the body that exacerbates symptoms that may have presented eventually anyway.

Because of all the variables that exist among those having been treated with interferon (stage of liver damage, length of HCV infection, genotype, lifestyle habits, family history, gender, etc.) AND the fact that such symptoms appear in those who HAVEN'T been treated with interferon, can't you concede that it might be hard to prove the direct link?

I have no idea why I continue to involve myself in this dispute, except that it seems unjust to wrongly attribute words to another person, and then to show hostility to that person because of ones own misperceptions.  

Can we agree on these points?

1.  Doctors should not discount the possibility of long-term adverse effects of interferon treatment.
2.  Studies should be done to discover why some patients experience adverse effects.
3.  If adverse effects are definitively linked to interferon, patients should be forewarned so they can make an informed choice regarding treatment.

[hepcdoc]

One thing is clear in SOC therapy.  Patients become irritable.

[Kalio1]

So Cal
Well said and with a lot fewer words than my Interferon addled brain could manage. I guess I do it thinking one day he will actually read what I wrote even though I know better after a year and a half.
Thank you for being so succinct.



Hepc, Now that was funny!

[DoubleDose]

I agree totally with the points you made at the end of your post.  All I have ever said is that all these post-tx problems people are encountering must be documented, understood, and possibly treated, if need be.  There has been a 'black hole' in the medical community regarding side effects and after effects for years, and now there seems to be a little more willingness to look at the problems.  

Just look at how many doctors do not even realize that AD's can be physically addictive, and if discontinued abrubtly can cause severe WD symptoms.  Wouldn't you think they would ALL know this?  I have seen two doctors in the past who gave no warning and were surprised at the WD symptoms on abrupt discontinuation of antidepressants.  I have also read accounts on this forum of the same thing happening to forum members.  I think many doctors have far less information about these drugs than we believe.  THAT is dangerous in itself.

Just think how little they really know about interferon!

Thanks for your synopsis.  Well put!

DD

[SoCal Lady]

(((((((((((((((((((((GROUP HUG!!!!!!!!!!!!)))))))))))))))))))


I wish everyone good health (eventually)...

[Micro2]

I am very messed up since tx ended 2years ago! I was not messed up prior to tx! I cannot work, collect ssdi, and had to downsize into a trailer in the woods which I have to struggle to keep! I work hard to get over the shame I feel when people ask me why I cant work and the docs act like its no big deal and have no concrete answers. I would not make it, if it were not for the Lord! I recently underwent comprehensive neuropsycological testing and THAT doc seemed very understanding. I wonder if it has anything to do with HER recent round of chemo?
Did someone get the number of that TRUCK!!!
Thats my story...and I love you all!!

[SoCal Lady]

I'm sorry you're having difficulties.  You have no reason to feel "shame" for undiagnosed medical problems.  If someone asks why you don't work, simply say:  "I have undiagnosed medical problems and it's very frustrating."  Beyond that, it's none of their business and you're not obligated to go into further detail.

Here are the last three stanzas of the famous poem "Desiderata".  I hope they give you some comfort and courage.  I also hope the sympathetic doctor helps you find answers to the health and economic challenges you face...

micro2:

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

I wish you well, micro2!

[ricochete]

"The other study ... that just knocked my socks off was hepatitis C. This was a study done by a hepatitis specialist who was treating hepatitis C with interferon," a protein that is part of the body's antiviral response. ... "Seventy percent developed marked fatigue, and 30 percent developed chronic fatigue syndrome. So it was the interferon treatment that caused the CFS, not the actual virus circulating in their system. ... The CFS is the immune response from an infection." This finding is consistent with the idea that the symptoms of CFS could be precipitated by an immune system in overdrive.

You can read the entire article here. And maybe get some answers as to the research that is or is not being done on such things as Chronic Fatigue Syndromes:

http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/06/05/CMG3NCLBC81.DTL