long term effect of Pegintron/Rebitrol therapy for HCV

I had the Pegintron/Rebitrol treatments in 6/2003.I do not know the dosage.I know it was high,I,m male,6'3",215#.I am having trouble with confusion,fuzzy head, body pain,my skin feels like I have fiberglass on it,balance problems at times.I am interrested in any information on clical trails or meds that might help me.I have found some informatiom on Damage to the Brain by Interferons and they talk about activation of microglia that secret glutamate and quinolinic acids.Is there any help to reduce my suffering.

[Upbeat]

Did you clear the virus?   Are you virus clear now?

                                                                                                        Ron

                                                                            

[abbas_one]

Hello,Dear friend hope you know me.I posted that article from doctor blaylock about Brain damage induced by this toxic garbage(interferon)

I am near 2 year post and have most off the side effects:bad mood,sexual dysfunction,very low libido,low sperm's count,chronic fatigue.low mussels power,mussel ache at nights,my body's hair became tiny and my head's hairs is dry.at nights I have zero energy and my mood is very bad and even I can not speak with my mother,I don't like anybody be around of me.I even hardly can do my home duties at nights. interferon is a silent killer.

do not listen to anybody about side effects in this forum,exept me.because they dont know anything.all of them like to attrebute your problems to another things like hcv virus or.... but no,it is interferon,be sure.

I read this all the time from people who have used interferon. Not many say they do not have HCV anymore but they all have other problems many like you describe.

There is no doubt that it is from interferon. I have the same feelings you describe. No  doctor can tell me what they are.

I have tried everything, usually these things are caused from brain damage caused by interferon toxicity and I do not know how to fix brains.

I do not know how to fix it, I just know that if people would learn to Just Say No to Interferon and peg intron, they would all be allot better off.

for brain toxicity you should try high dose and varied of antioxidant suplements,they are not cure.but maybe you feel better.certain supplement: NADH,Alpha lipoic acid,vitamin c,vitamin E,Omega 3 fish oils,green tea,silymarin(milk thistle),magnaisum,zinc,..... near infrared light sauna maybe be useful. But again it is not cure for brain damage....sorry

Interferon can also effects on your hipotalamus reulatory centers on brain and decrease sex hormones.check your DHEA,prolactin,SHBG,  testestrone, FSH and cortisol and estradiol soon.I am sure your hormonal system is inbalance.

[mikesimon]

SEE: http://clinicaloptions.com/Hepatitis/Treatment%20Updates on depression and HCV - not treatment, the disease.

"Summary: Implications for Clinical Practice

    * Prevalence of depressive disorders is increased in HCV-infected individuals when compared with the general population. Reported prevalence rates for depression range from 24% to 70% in HCV-infected patients vs 6% to 10% in the general population.
    * Hepatitis C virus

[willows]

Your last line was so very funny,  After reading abbas post...I was bewildered and then annoyed, I hate someone trying to tell me who to listen to or WHAT not to do.  In fact a good way to get me to act is to tell me not to...abbas, you seem to have just a bit of an attitude about IFN.   Ya think!??

What a funny place to post, like railing against insulin to a bunch of diabetics.  Get a grip, abbas, right now, there is no better choice available and even at 50%, it is worth the try.  Hep C made me brave and strong, and I want you to know, abbas, I was ALWAYS smart and hardheaded.  30 weeks of IFN did not take that away.

Willow

[katerika]

You are so angry. Lack of libido is often a side effect of Liver disease. As is fatigue etc. Did you finish treatment? I will be greatful for most any side effect that doesn't end in Death. Please seek out help for your anger. Amazingly just drinking water will clear lots of symptoms that are blamed on the drugs, because the drugs cause dehydration, and that causes muscle aches etc. I don't think water will help with your libido.
Good Luck

[ladywhy]

'betcha rickTn and abbas are one and the same. Same person that is.

[Eisbein]

Abbas didn't write this post.
He has lost his young manhood and has a low sperm count. Not sure how they measured the sperm count, since his mechanism to produce it has not been working after injection himself with this toxic garbage.
Some 2 1/2 years ago he wrote that he was dreaming about f..... 20 Russian women in one night......we do know that that dream is kaput, and we also know, that cerebral atrophy is the cause, since sex originates in the brain???? :)

Therefore, nobody should take toxic garbage, you will get tiny body hair, your pubic hair will become straight, you will get low muscle power, and grow a third eye, right in the back of your head.

Ina

[willing]

good to see you in such fine form!

( and distinguishing the anti-supplement threads from the anti-ifn threads is getting harder all the time...have to keep checking the title..)

[pigeonca]

That was hysterical.  Made my day.

[mikesimon]

Go ahead Ina! I enjoyed that immensely. MY Mother always said to look on the bright side and in this thread you're it. Mike

[abbas_one]

hello dear friend(Eisbein).I am happy that hear from you again.I also happy that you remember me completly.So fun about that russian women...but be sure finaly I will cope with this problem(SD) and that dream will be executed...

most of people here know that when I write question in this forum and ressive comments from friends,I dont answer and its better to say I cant.

I rememberd one friend told that such conversation(with abbas)is look like a speaking with wall.
it is righ.being chronic fatique,stress hormone inbalance,damaged hipotalamus,0.6 testesrtone,low DHEA,high cortisol,brain toxicity,musel ache,that all have induced by interferon treatment  of course wont let you to be online and answer to people that most of them cant undrstand you or dont like hear from reality and longterm side effects of that toxic silent killer garbage(interferon plus riba).
Why I waste my time and translate many words from farsi to english difficulty that maybe someone in this world undrstand my pains or at least hear me but instead of it they report me to admin of medhelp.org to remove my posts just because I saied the reality and told about that toxic garbage side effects and it is against drug companies?
why why why.
yes, nowadays it is first money and then GOD

[RickTN]

No RickTN is not abbas,I have moved on and am happy to be virus free.I was looking for info.not just a bunch of BS!

[willing]

sorry - your original question got drowned in the crossfire  of the continuing pro/con tx bs which is an endless source of entertainment around here. Your post-tx symptoms sound considerably more severe than what is generally reported here, particularly 3 years after completion.  Reports of immune-related dysfunction, achiness, cognitive fuzziness, fatigue, depression, thyroid disorders etc. post tx  are fairly common but what you are describing seems more intense. Also I believe nearly everyone, myself included, experiences improvement over time. Either what you are experiencing is an unusual manifestation of post-tx symptoms or, more likely, they are due to another cause.

[mustangshelly]

I believe in the article you posted about this toxic garbage interferon mentioned that you can reduce the amount of damage done to the brain by taking any methyl based med while on tx. Well guess what, I have been on a methyl based drug since starting tx and my chances of significant damage  to the brain is very low...you need to get a grip,get over yourself and move on buddy. By the way my sex drive hasn't changed that much on 67/72 weeks of interferon therapy,  if anything it has increased so as i stated before get over yourself.

[Eisbein]

Abbas,
Here is the correct version:
God grand me serenety to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.

If you read this verse over and over again, there can only be one conclusion, that you too will have to accept the things you can not change ( namely your post tx sides and the responses of people on the board. )

The only thing you can change is yourself. So get busy, because this anger you are carrying around serves no purpose except raising your cortisol levels, which according to you has been elevated.
Inform yourself about the function of cortisol and you may see the connection.

Jim,
my face is not 100%, but pretty close.
Just saw big shot this morning for the same rashes on my right arm and shoulder. They still have no clue, nothing works, and I atribute it to toxic garbage.
My brain is improving though, very very slowly.

I now find reading here relaxing, and try every day to get a couple of posts in.
I am taking care of my husband who is dying of natural causes, so skin and hep c are not my concern presently.
Did I tell you that my platelets finally reached pre tx levels, took about 15 month.
Dr.C told my back up doc here in town to run an ultrasound and AFP every 6 month.
I just read that the mere fact of having had the virus predisposes us to liver cancer, regardless of stage.
BTW, I didn't get a chance to respond to your atrial fib post.
My husband started some 15 years ago to move in and out of FAST atrial fib. Once a year or so, and always converted on his own
About 6 years ago he only converted with plain Toprol, just one pill once it started.
About 5 month ago he suddenly went into SLOW atrial fib, and got a pacemaker. They tried to convert him with drugs, but as we get older, it becomes more and more difficult to get back into normal sinus rythm.
Coumadin looses some of its effectiveness for stroke prevention in the elderly, and can cause as much harm as good....hemorrhagic stroke for example as bloodvessels become more fragile....you are not in that age group, not yet.....and he remained on Aspirin.
He got a stroke in the frontal lobe several month ago, and that brought about a general decline.
Are you familiar with Tikosyn? Cardiologist needs to be certified to presribe it, and the pharmacy needs to be certified to dispense it. Good drug, but damn if you miss a dose.

Mike,
I am trying not to get my feathers ruffled, but when I read toxic garbage and low sperm count I see red.

Ina

[jmjm530]

I pretty much agree with Ina here and also don't think Abbas warrants the extent of the criticism he has received regarding his posts. Others -- DoubleDose for example -- have posted extensively about post-tx side effects, including sexual side effects, and they are not young men in their early twenties like Abbas. I see these types of side effects especially troublesome to someone so young and Abbas has every right here to express his opinions. Many of us have called SOC something akin to 'toxic garbage' without using those precise words, so let the young man be and let him express.

Ina,

How are you doing? How is the skin? Happy to report that while no sun bathing -- I've actually been out in the sun this summer at times for a couple of hours, and  without the terrible skin (rosacea) reaction of last summer. Still planning on some IPL or laser work in the fall, but so far things are improving.

All the best,

-- Jim

[mikesimon]

If you believe that the tone, motivation and academic level of the posts of DoubleDose and Abbas are comparable or similar or related by anything more than side effects are mentioned then you and I see the world very differently. Or is it just that you're such a sensitive and compassionate man? I don't understand a lot of what you say anymore. Mike

[jmjm530]

Mike: If you believe that the tone, motivation and academic level of the posts of DoubleDose and Abbas are comparable or similar or related by anything more than side effects are mentioned then you and I see the world very differently.
---------------------------------------
Maybe I didn't make my point very well, but in a sense you have helped me. I'm going to leave "motivation" aside, because I'm not a seer, but yes, the "tone" and "academic level" of the two posters are significantly different. The point I didn't make well enough was that tone and academics shouldn't be held against Abbas or anyone here, as long as they are civil to fellow posters. Abbas -- in a second language -- is expressing a very young man's frustration with his treatment experience -- as has DD and others, with yes, a different tone, but on similar issues. Hopefully, we can agree to disagree on this and other issues, such as my interpretation of the "Sonic" thread posts, which btw were not directed to you personally. I've re-read the thread, and both you and I pretty much have the same take on "Sonic" so not really sure what the hubub was about.

Be well,

-- Jim

[mikesimon]

I try to make allowance for translational confusion which might arise in syntax or grammar or stem from cultural differences. My problem with Abbas' posts have more to do with attitude and delivery and these I do not attribute to his nationality. I find his posts to be essentially nothing more than diatribes - and rather caustic diatribes. They are lecturing or haranguing and leave no room for discussion - they do no invite discussion. DoubleDose on the other hand seems always to be searching for the truth rather than proclaiming the truth and he does so by soliciting input from other members regardless of whether it conforms or contrasts with his experience. Yes, they both believe they have been negatively affected by treatment but that is the only thing that they share insofar as their posts indicate. DoubleDose is always a gentleman and though we may not like to hear his ideas they are always expressed as ideas or theories and Abbas has not evolved to that level and I do not believe language or cultural issues are the cause. Mike

[abbas_one]

thanks jmjm that you supported from me. I am with you...
with love,Abbas

To all: God(if u are exist) Grant me the serenity to accept the things(look like some people in this forum), that I can not change,Courage to change the things that I can and wisdom to know the difference.

[jmjm530]

Well Mike, we really have seen eye-to-eye on what I might call "post tonality" since I first arrived here, so nothing really new and I don't expect it to change in the future. In this case, I find no fault and you do. With some other posters in the past, I found fault and you didn't. Still, respect exists on this end and hopefully on yours as well.

Abbas,

Amen.And I truly hope better days will follow. Time in itself can be a healer and it has certainly helped me to some extent.

-- Jim

[mikesimon]

I respect your knowledge,  your intellect and  your willingness to help others. It is your judgment that I sometimes disagree with. But, it would be a boring world and board if everyone saw everything the same. Stay well Jim. Mike

[Eisbein]

Some posts are unforgettable, yours was one of them.
I do wish you luck in fulfilling your dream, just make sure you wear protection.

I think your posts about post tx sides have not fallen on deaf ears.
Many hear can relate, myself included, but constantly looking back may turn you into a pillar of salt.
Almost all the info about what Interferon can do to us is only a mouse click away. It was your responsibility to inform yourself and weigh the risks vs rewards.
Yes doctors are supposed to warn us, and politians are not supposed to lie, insurance companies are supposed to pay up, and mechanics are supposed to fix your car properly, etc. you get the drift.
In this, our most imperfect world, it behooves us to always inform ourselves. Even if we do, we don't always get it right.
I made a choice to tx, so did you, and now we must live with the consequences.
Like everybody else, I had hoped that long term post tx sides would strike the other guy and not me. But they did, and I posted about them many times, but I never ever would I call Interferon "toxic garbage".
It simply is a nasty drug among many other nasty drugs that have large side effect profiles. You picked your poison, nobody else.

You are young and have lots of living to do. Concentrate on what you want to do about your remaining genotype, and how to overcome all those sides, as opposed to writing about toxic garbage and low sperm count. No girl gives a sh...how many sperm are floating around....anyhow, quality counts, not quantity.
Better to have one motile sperm over 10 lame ducks that can't swim against gravity.
Still like to know how this low perm count was established. Feel free to answer in great detail. I am a very detailed oriented person, and this topic remains of great interest to me, low libido or not.

BTW, you didn't take offense, my hat off to you.

Ina

[abbas_one]

Dear freiend,one weak a go I posted an article about effect of interferon on sexual hormones and I also described my sexual health problems induced by that toxic garbage.(however some kids reported my post to momy and momy removed my post..)

But in that time one person(I forgot his ID)told that Jim also had a problem  about testestrone defficency and he has posted something about it...

So I searched the articles and found those questions which you were done in the forums .once was in 9/18/2005 and it was your question about testestrone replacement treatment.depeding your writ that time you was in tx.Tell me what happent to u? are u finished your tx now? did you use testestrone finaly? how much time post tx u are? what about your libidio and other side effects?  explain more plz


In good health,Abbas from Persia

[Eisbein]

I just read your response to Rick again:

do not listen to anybody about side effects in this forum,exept me.because they dont know anything.all of them like to attrebute your problems to another things like hcv virus or.... but no,it is interferon,be sure.
Interferon can also effects on your hipotalamus reulatory centers on brain and decrease sex hormones.check your DHEA,prolactin,SHBG, testestrone, FSH and cortisol and estradiol soon.I am sure your hormonal system is inbalance.

Hey, Rick is a dude. He does not need to test FSH (follicle stimulating hormone), he does not have any ovary, you know, the baby making equipment.

DO NOT take toxic garbage again. You convinced me, it did damage to you and gave you toxic brain. Hopefully not permanent.

Ina

[mikesimon]

"I am trying not to get my feathers ruffled, but when I read toxic garbage and low sperm count I see red."
Why is that? Mike

[mikesimon]

If you've been reading the board lately perhaps you might want to reevaluate your opinion of Abbas. I think it's clear that you have made an error in judgment or else he's pathological and/or insane. Mike

[Eisbein]

I have noticed that Jim is not always returning to old posts. Maybe I can flag him down.

As to our young "friend", it's like throwing pearls of wisdom in front of.....  :)

Ina

[jmjm530]

I'm not on nearly as much as before and don't read all the threads, etc. I've said everything I have to say regarding "Abbas", but I'm so very sorry to hear that your husband and both of you will be in my prayers tonight.

Glad your skin is getting better but don't know what to say about the rash other than to suspect contact dermatitis -- perhaps an irritant in your laundry detergent or moisturizer -- or a clothes material or dye. When my skin was at its worse, I tried only wearing white cotton (or silk) that was laundered in a non-perfumed hypoallergenic soap.

On this end, while certainly not sunbathing, I have been out in the sun a lot this summer, and to my delight the rosacea has not gotten any worse. What a relief!

Hope this finds you strong and grounded in what must be a difficult time in your life.

All the best,

-- Jim