Post treatment symptoms of Pegulated Interferon\Raboviron

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

[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.

[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.

[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.

[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

[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

[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

[SoCal Lady]

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


I wish everyone good health (eventually)...

[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

[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.

[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

[ricochete]

Even after a single dose of 0.1 MU of IFN-a, normal healthy volunteers report subjectively reduced alertness. A single dose of 1.5 MU results in slowed performance on a reaction time test 6 and 10 hours after injection. Subacute toxicity develops after several weeks of chronic IFN-a therapy and includes subjective complaints of memory loss, depression, lack of initiative, and generalized slowing. This pattern.. .....is indicative of frontal-subcortical dysfunction and consistent with mild subcortical dementia. A similar pattern of deficits has been observed in patients with Parkinson`s disease and multiple sclerosis.... ...... Most studies report the resolution of neurotoxic symptoms within 2 to 3 weeks following the discontinuation of IFN-a therapy. However, some patients develop neurotoxic side effects that persist for months or years after treatment discontinuation, without any intervening change in their disease status or the initiation of other neurotoxic therapies....

Assessment of Fatigue and Psychologic Disturbances in Patients with Hepatitis C Virus Infection
http://www.natap.org/2001/jul/assessment070901.htm
HCV and Brain Dysfunction (report of this study at liver conference 2 years ago)
http://www.natap.org/2000/ddw/rpt_11.htm

[Micro2]

Thank YOU!!!

[Rustycup]

I have just read some of the comments about post treatment symptoms. I went through 48 weeks of treatment for hep C which included having to be hospitalized for shortness of breath and another time for disorintation and extremely blurred vision. Having worked for the first 24 weeks I was then forced to take medical leave. I may also add that during that time my lung capacity had dropped to 68% of normal. These were all attributed to the treatments. Through hard work and exercise fortunatley my lung capacity returned to almost normal.
It has now been 14 months since I finished treatment and had returned to work. I am currently under the care of a Neurologist and also being treated for severe depression and loss of the ability to control my emotions. I went through all the neurologitcal and physchriatic evals and testing. The consensous of all is that my brain function has been severley impaired and this is a result of the treatment from the hepatitis. I was again just placed on medical leave, having been given a choice of that or losing my job. This after 24 years with the same company with nothing but excellent to exemplary reviews. Is this coincidence? None of these issues or symptoms had presented themselves before treatment. Despite having been told that I would most likely not be able to return to work and handle the responsibility and decision making my position required, I fought it and worked hard trying to overcome these deficencies I had aquired. Obviously I failed. No wonder I am struggling to fight depression. Hopefully someday, the FDA will acknowledge the fact that there are more than just a handful of people with long term side effects.

[oanyway]

Is Peg-Interferon/Ribivarin co-treatment also chemotherapy?
I have had people tell me it is like chemo, and others claim
to be on Chemotherapy.  I prefer to be accurate.  Can someone tell me for sure?

[ricochete]

Here's an article re: the treatment in the journal of chemotherapy so I would say yes to the chemotherapy question.


Reversible alopecia universalis during treatment with peg-interferon and ribavirin for chronic hepatitis C

TALIANI G. ; BILIOTTI E. ; CAPANNI M. ; TOZZI A. ; BRESCI S. ; PIMPINELLI N.

R

[MyLab]

It is certainly nice to be able to share my experiences with this disease/treatment.  About 7 or 8 years ago I was treated for 18 months with Interferon, but the virus multiplied with a vengence.  I was then put on Peg-Intron for another 18 months.  I've had 0 virus load for about 3 years now.  I'm experiencing so many spinal problems.  I have a herniated disc and several bulging discs for no justifiable reasons.  I tested positive for Rheumatoid arthritis, but the docs think it was a false negative.  I feel like an old lady.  I'm 45 years old, yet my bones feel so aged.

Has anyone been off treatment as long and still experiencing post-treatment effects?

[MyLab]

It is certainly nice to be able to share my experiences with this disease/treatment.  About 7 or 8 years ago I was treated for 18 months with Interferon, but the virus multiplied with a vengence.  I was then put on Peg-Intron for another 18 months.  I've had 0 virus load for about 3 years now.  I'm experiencing so many spinal problems.  I have a herniated disc and several bulging discs for no justifiable reasons.  I tested positive for Rheumatoid arthritis, but the docs think it was a false negative.  I feel like an old lady.  I'm 45 years old, yet my bones feel so aged.

Has anyone been off treatment as long and still experiencing post-treatment effects?

[MyLab]

It is certainly nice to be able to share my experiences with this disease/treatment.  About 7 or 8 years ago I was treated for 18 months with Interferon, but the virus multiplied with a vengence.  I was then put on Peg-Intron for another 18 months.  I've had 0 virus load for about 3 years now.  I'm experiencing so many spinal problems.  I have a herniated disc and several bulging discs for no justifiable reasons.  I tested positive for Rheumatoid arthritis, but the docs think it was a false negative.  I feel like an old lady.  I'm 45 years old, yet my bones feel so aged.

Has anyone been off treatment as long and still experiencing post-treatment effects?

[Zorro99]

Take 20mg of deprenyl daily during treatment and 20 mg daily post treatment.  This will prevent brain damage and lessen all side effects.  Good luck!

What is deprenyl?

http://www.ceri.com/deprenyl.htm

Where can I buy deprenyl at 1/3 the cost without a prescription?

http://www.antiaging-systems.com/iasstore/acatalog/index.html

[Maya**]

I am 29.  I have finished interferon treatment for six months now.  I have very painful joints along with intense fatige.  This seems to come and go.  I have tested positive for rheumatoid factor.  My doctor says to wait to see if it goes away.  Anyone know if it will?

[desrt]

If it doesn't, there is an old anti-malarial drug - Plaquenil - that some post-IFN treatment patients with RA have gotten relief from.
Good luck.

[Maya**]

Thanks Ill look into it.  I am rather put off taking any more drugs after being on ribavirin and interferon.  I will try alternative treatments first and see if that will work.  I will keep in mind your suggestion if it hasnt gone in another 6 mnths.

[linda956]

It is shocking news to me that all these problems I have developed since Peg Interferon/Rib treatment for 6 months are not just my personal problem. I have spine problems, disc problems in lumbar and cervical regions, severe to moderate pain, hip pain, sciatica that fels like my posterior is slashed with open wounds, lots of pain on walking, can't turn head, get out of bed unaided, etc. Pretty much disabled, All since treatment. I was a jogger before. No more. Also positive RA tests. Strange wrinkling on skin of hands, like a 90 year old.I am 45 not 90 but feel ancient. Teflon brain too; nothing sticks.
The good news is the RA levels came down after 3 years. I take Vicodin but am worried about the acetominophen. No doctor thus far seems to know what's up. What type of doc do I need?
Any suggestions?  
p.s. the irritability passes when the meds are discontinued.

[linda956]

It is shocking news to me that all these problems I have developed since Peg Interferon/Rib treatment for 6 months are not just my personal problem. I have spine problems, disc problems in lumbar and cervical regions, severe to moderate pain, hip pain, sciatica that fels like my posterior is slashed with open wounds, lots of pain on walking, can't turn head, get out of bed unaided, etc. Pretty much disabled, All since treatment. I was a jogger before. No more. Also positive RA tests. Strange wrinkling on skin of hands, like a 90 year old.I am 45 not 90 but feel ancient. Teflon brain too; nothing sticks.
The good news is the RA levels came down after 3 years. I take Vicodin but am worried about the acetominophen. No doctor thus far seems to know what's up. What type of doc do I need?
Any suggestions?  
p.s. the irritability passes when the meds are discontinued.

[desrt]

Switch to vicoprofen and find a good rheumatologist.

[hippygem]

I did the tx in 2004, relapser, geno 3.  I still suffer from brain fog, memory loss and fatigue.  We do need more follow up studies about interferon, they should have been done years ago.   I now take 'Hep C Complete' from All In One Nutrition, which has selenium, milk thistle and alpha lipoic acid in it.  Been taking it for 9 weeks now and the fatigue isnt as bad as before.  I have more energy and dont lie around on the couch all day whenever I could get the chance.

[HARRYBEADS]

  DD, So all we have to do to regain our old selves is take antidepressants, what ones and what dose please!!! Most people on treatment are treated in advance for depression and monitored because tx is proven to cause depression.Depression is common and anticipated in all life threatning illnesses...(GO FIGURE, NEED A STUDY FOR THAT,I HAVE A HYPOTHESIS I'D LIKE TO TRY ON YOU). It is a fact that interferon based medicine effect the immune system and subject the patient to autoimmune disorders short and long term. Here is a few examples MS,PARKINSON,various cancers,lupus like disorders, arthritic disorders, vascular disease , heart disease.These are all in the product warnings that come in every pack,written by the manufacturer.
Some believe that hep c is an auto immune disease in it's self and that the virus does not destroy the host but their immune system does the damage to the liver. Symtems of the common cold and flu are all auto immune over reactions that cause damage and possible death.
The choice is ours to take these symthetic hormones or we face possible death or worse.We sufferers are looking for solutions to our conditions and feedback is the scientific way to do this , me I'm in three studies how about the rest of yas.

Harry

[skydog007]

Posted this this AM but it never made it to the forum.  Maybe that's an omen?  I am post treatment with Pegintron/ribavirin tx.  Clear of virus for 13 months now.  About 2-3 months after treatment I started getting hip, knee, foot and back pain which has continued to worsen over the months.  At first, after getting off treatment, I felt good.  I could walk a little ways and do a few things.  It seems that as time goes on, I continue to get worse as far as joint pain and emotional stability.  Like your wife, there are no supportive medical findings.  In fact, I'm in near perfect health!  If it weren't  for the fact that I'm in excruciating pain every day and my emotions are running rampant like a roaring lion, why everything would be just hunky-dory.  I'm very sorry, but as I answer this, I am having a very bad day emotionally for no reason at all, as yesterday emotionally I felt just fine, so I will make this brief so as not to unduly spew my venom on anyone else.  Please forgive me.  All is not always bad, but sometimes it really is.  I just have to call it as I see it.

[merryBe]

I don't find it surprising that after the body has been forced into a constant state of immune response for a year or more, that readjusting to normal levels on the lymphatic side of things could prove difficult. The body fights hard with extra Interferon...suddenly that's shut off and what does it fight now?  Sometimes it turns on it's own joints etc. because it is still in fight mode.

I like what HR said in the Health Pages,  (on the HR thread) regarding tapering INF being a better outcome for the patient from the standpoint of allowing the immune system to readjust itself more seemlessly. Perhaps what they put her on will help to settle it back.  I know with some types of autoimmune Interferon is part of the tx, so perhaps even a return to a lesser dose and a gradual weaning might be helpful.
It all depends on what the screens show the problem is, but it might be worth discussing with the doctor, because steroids, the other often used remedy, can be harder on a liver.  Good luck to you both, it might not help much to know, but it is true you are not alone in having these after effects.

mb

Sorry for your wifes trouble, hope it gets resolved for her.

[mysunshine]

I have done interferon and ribavirin 4 times since 1995. Last tx 2004. I am undetectable now, but I am on disability because of fibromyalgia and cognative imparement, plus many other problems. I lost half my thyroid,very early menopause caused my tx. I am living proof that there are some that suffer greatly from the drugs. I wish I could do the things I use to do, but I can't. I am so fatigued, one day I am doing ok, but the next I can hardly get out of bed. I'm not depressed. A good test for depression is give the depressed person a blank sheet of paper and tell them to make a list of what they would like to do tomorrow. It would most likely be blank. Give me a blank sheet of paper and the list would fill up the whole page. I would LOVE to do them, but my mind and painful body can't.  I know there are those that benefit greatly from the tx, that's wonderful. For me, it has been a nightmare. As you can tell, today is a bad day, hopefully tomorrow I will feel a bit better.

[Hecklerr]

Hello All,

I was relieved to read your threads on Post Treatment Sydrome, as my doctor is calling it.  I completed 44 weeks of Peg Intron/Interferon and Rhibasphere treatment for Hep C.  It was hell - incredible fatique, depression, insomnia, night sweats, ears ringing, brain fog, muscle and joint soreness, hair loss, you name it - I had it. All the side effects they tell you about and MORE.  The doctor and I finally agreed that rather than continue the last 4 weeks, that it was appropriate for me to stop. He also said I could expect the drugs to take a month or more to get out of my system. His partner had told me more like 6 months. The nurse practitioner that I saw bi-weekly said a month or more.  



It's been just over 3 months, and while I can tell some improvement - not as brain foggy - I am experiencing extreme muscle and joint pain, chronic fatigue, ears ringing, insomnia, and skin itching and breakouts.  It almost seems worse at this point, because when I was brain foggy during treatment, it didn't seem so bad. Now that I can think straight - this is horrible. They have me scheduled for Xrays of my knees and blood tests to check for arthritis, thyroid problems, etc. Other than that, there's not much they can do.  They call it Post Treatment Syndrome. They're not too sure why; they seem to think that it may unmask problems that may already be there, but they are not sure. So at this point, while the tests say I am Hep C free at present, I am hoping that in the future I will get better as far as the side effects post treatment.   Let me sign off by saying that my hair seems to be growing back just fine. Also that this is one hell of a cure.  I am sure that if it works or not, life will be better.



It was a very difficult decision to go through the treatment, as I felt absolutely fine - strong, healthy (in all other ways), full of energy, etc.  If I were to have to do it again, I would definitely have done things much differently, i.e. quit my job, taken a full year off, had my spouse take a year off with me. I can't say how important it was for me to have my wife help me through all of this. I feel for anyone who has to do this by themselves. Truly brutal. My sister went through cancer surgery and chemo last year far easier than this Hep C treatment has been. Bless her heart.  



Finding these Post Treatment posts has been a God send, as I see I am not the only person having problems after the fact.  I guess it's nice to know I'm not alone, although I certainly don't wish it on anybody. I guess all we can do is hope and pray that the treatment works for as many people as possible, and if not that it at least will alleviate any Hep C problems they may be having now or in the future. Again, thank you all for taking the time to post, as it does help. Trust me - it helped me!

Hecklerr



PS About dogs.....I have a Rhodesian Ridgeback and a Boston Terrier, and until a week ago, a French Bulldog (God rest his little doggie soul). I found that throughout the treatment and to this very day, particularly with my Rhodesian Ridgeback, my dogs made me feel better even in the roughest of times. I found that taking care of them, loving on them, having them make me laugh, them loving on me, was a great ointment to the symptoms of all this treatment. I cannot say how important it was for me to have them in my life. Don't get me wrong - I love my wife and she's been a great boon to me in all ways. But the goofiness of my dogs and total unconditional love has been a God send. ; -)

[hippygem]

Hi Hecklerr

Since I posted in this thread back then, I will say that the post treatment side effects lasted 3 years for me, that may be because I was a relapser as well, but my memory and concentration levels changed immensley during and after treatment.  And I never got back to my 'old self'.

I am now on my second round of treatment, for 48 weeks this time, higher dose of ribavirin - 108 pegintron, 1000 Riba, started Tx on 11/11/09, RVR at week 4.
Had my 19th injection this week.
Im a relapser from 180 interferon & 800 Riba for 24 weeks in 2004.
I had fibrosis stage 4 before first treatment and then biopsy showed reversal of fibrosis to stage 2.  So it wasnt for nothing.
I just wish that I had done 48 weeks of treatment the first time, especially with having fibrosis.
I also got control of Insulin Resistance this time around, so hopefully I wont relapse again.

Its a chance we all take when we go on treatment, the side effects and the post treatment side effects, unfortunately a lot of us didnt know the repercussions of treatment, and lingering post treatment side effects.  But with everyone now warning everyone else through forums like this, better decisions can be made.

We definately need more post treatment studies and follow ups.

Also, there isnt a VL machine that reads ZERO, only that we get the virus into an UNDETECTABLE level, and our immune systems keep it at bay.  I believe the virus is still in our systems, in our brain and tissues.

I used to have a Rodesian Ridgeback, fantastic dog, loved her, she died of kidney failure when 10 years old.

I also have to agree that pets are a great distraction from treatment, and good company.
I recently have a new addition to the family, my first grandaughter, so she is keeping me 'sane' or  I visit her when Im depressed and have the energy.  

Linda

[hippygem]

Sorry, that was supposed to say ' fibrosis stage 3' and after treatment was reversed to 'fibrosis stage 2'.

Linda

[tonya771]

Hi, I am new to this so bear with me, lol!  I completed my treatment in April 2009. 6 month treatment of interferon and rib.  All my tests show clear, so that is all good.  When I started treatment they warned me of the side effects, flu like symptoms, depression, headaches and all that good stuff, but the treatment wasn't too bad, they started me on an anti-depressant and medication for my headaches.  But for the last yr or more I have been having the flu like symptoms, major body aches mostly in my upper torso, back problems and I have had every test imaginable done to figure out why I am in so much pain everyday. Some days are better than others.  I am on cymbalta, lyrica, norco (pain), ambien, and vitamin supplements.  I am so frustrated and so is my family because no one seems to be able to tell me what is wrong with me.  I am going to see a rheumatologist in April so hopefully he may be able to get me some relief or at least some answers so I can get my life back to normal.  If anyone out there has any information on new treatments or remedies or any answers for me I am open for suggestions.  Thank you

[Bill1954]

Tonya, scroll to the top of this page, click on the ‘post a question’ button and paste this question as a new post; this thread you posted in originated in 2006, and has been archived.

I don’t have any specific info for you; I hope you find answers though—

Bill

[hippygem]

Tonya, maybe you have arthritis, the treatment can exacerbate arthritis and make it worse during and post treatment.
There is a name of a powdered product that you can take, but the name of it has eluded me, give me time to think of it.  Sorry, Im on treatment just now and memory is a huge issue.

Linda

[hippygem]

Forgot to mention, have you looked into Fibromyalgia, body aches and pains, mention it to your doctor.  It is a symptom of HCV, and treatment, and the general population also can get it too.

Linda

[jivacite]

I was treated twice..once in 2000 with the 3 time a week combo and in 2003 with the PEG combo. I had no choice. My liver was stage 4 and I was given 2-5 years to live. Well I'm still here 5 years past my expiration date but things are a little sour. It seems the biggest lasting effects are fatigue, bone damage and possible brain and/or DNA damage. But just my opinion. Mine are fatigue, tinnitus, and a little short-term memory problems. We are slowly being recognized by the medical profession...their little lost lambs. I still have no detectable viral load so all in all I would rather be on this side of the grass. But my advice to anyone thinking about taking the therapy....only do it if your liver is already torched. Otherwise clean up your act and live long and prosper!

[Upbeat]

It all comes down to Quality or Quanity of life.    

[Tamieka]

Hi there,
I am new to this site, and is the first site I am a member of.  I finished 48 weeks of combination treatment at the end of March 2010.  I am going tomorrow for my 3 month check up.  I am surprised to hear so many have post symptoms.  I was left with a very underactive thryroid, which has seen me gain 7 kilos, as well as facial acne and other accompanying side effects.  Thyroxine seems to be helping a little with the fatigue, but not the weight nor the acne.  For the past two weeks, my lips seem to burning 24/7.  It's such a shame to go through 48 weeks of hell as I incurred every side effect of therapy severely except for insomnia, as I have a four year old with no help except for one day per week, and then to end up with ongoing symptoms.

I do wish everyone the best of luck, and hope all your post symptoms seem to disapear over time.

My son is calling me, better go.  

I am so glad I am part of a site that I can relate to, as none of my friends know, my family have not been supportive and no longer have a relationship with them, and it's not the same only having to speak with my husband and specialist.  I look forward to some company.

cheers,

[Xville]

Just want to say it's disappointing to be getting these rough symptoms after treatment ended when I was anticipating feeling better.  Just want to say that.  I don't have the brain power to come up with anything more intelligent for all you genius types. I guess the meds fried my brain.  I hope I achieve SVR but I'm about over the whole mess anyway. Screw this.

[DoubleDose]

I think its plain and simple a case of post-tx after effects, which seem to be more or less a typical outcome for many of us.  If you look at the attitudes five years ago versus today on post-interferon syndrome, you will see that the issue has gone from being something that many people denied existed, to now being pretty plainly recognized by almost all forum members, and a rapidly increasing number of doctors, in many different fields.  The complaints of rapidly escalating, pronounced problems after ending therapy have been repeated over and over by countless people on this forum, as well as in international surveys.  This is something the FDA needs to be much more aware of, through direct feedback from us, and our physicians.  Many of us are suffering long term medical issues directly as a result of having done large amounts of interferon, which is indeed an extremely powerful, immune system modulating drug, and that also is capable of creating major changes in the way that our nervous system, immune system, and our brains work.  Some may bounce back to normal in a few months...but I believe we are seeing a large group that continues on with a wide range of nasty physical problems that they DID NOT have before they did the tx.  Its no coincidence that all of these problems begin after ending therapy...it is a direct result of the therapy, from what I have experienced, and observed in others who suffer from this syndrome.  Some medical centers term it "post-interferon syndrome", others have just called it long term interferon after effects....regardless of what you call it...it is a reality...and I have yet to find, or read about any doctor that knows what to do about it, or how to treat it.  Let's all keep demanding answers, and more research.

DoubleDose

[hippygem]

Hi
I finished 2nd round tx October 2010, 48 wks.  I am SVR now, found out in April 2011.

I now find that I have swollen hands/knuckles/joint pain, wrist pain.  Back/neck pain.  Lower left back/hip/thigh/pelvic pain.

Ive had RA blood tests but nothing showed up.  So they sent me for xrays on the hands, and there is bone deteriation.  
Was sent to Rheumatologist, and he put me on 20,000 mg vitamin D, one a week.  plus 15mg fish oil daily.  I am to have an ultrasound on my wrist/thumb area and they are going to inject cortisone into it to take away the pain.
They also want to have xrays on the hip/pelvic area, so booked in for that, they think it is bursitis.
They arent sure if I have osteoarthritis, and waiting results of other tests.

If I dont improve between now and my next rheumatologist visit which is in August 2011 they will send me for 'nerve' tests and investigate further.

Mentally I am struggling, just to think straight and stop the jumble going around in my head, its hard to retain information, and huge memory issues.

I will update here in this post when I have more results in August, I think its important that we keep this thread going even though it is an old one.

[DaveinMO]

I am 8 years post tx......and still have many sides that were not present prior to tx.....the premature aging is, I believe, due to the damage done to our hyprocondrial dna.....and I believe it is not repairable....but can be helped with specific medications and supplements....

We are and have been on a journey which to some is not supported and others is overwhelming.....me....I trust science, if the studies are done independently of those who have a stakehold in the finds.....Just Saying!

Doc_Caring in MO