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?

[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