What Interferon done with my body.14 months post tx.for new comers.please read

[abbas11]

Hello.Abbas 23 years old,boy.pre tx i was a hyper body builder.Was very nice life.the situation of health that I had pre tx has been changed to a unreachable dream now.I achieved to SVR. but now I am
14 months post tx :

Sexual dysfunction(zero libido,erectile dysfunction,low amount of sperm,decrease the size of testicle,penis allways is sleep 24 hours a day)

other exist side effects: low energy,chronic fatique,depression,anxiety,brain fog,low musel power,no fun in my life,hopeless, I live as a movable dead.

Interferon ruined my best younghood years.Who is responsible?

Despite poor effect on controlling the virus and many side effects on the brain's stem,*** doctors still continue use this toxic garbage. Never say yes to interferons.its a horrible drug.

I was drug addict for 5 years, heroin injection not ruined my body, but interferon damaged all of my organs.

NEVER SAY YES TO INTERFERON.

Abbas,23.Iran

[cuteus]

your doctor might not have been lying when he told you he had not seen it, since most people do not continue with the problems of tx once they are done.  It is always a good idea to read the inserts of ALL meds, because a dr might only be familiar with what they have seen in their patients. Since they prescribe so many medications they can not remember every possible side that might come with them, it is up to us to continue reading on them.
the tx for ongoing issues post tx is basically the same as for people that have the conditions mentioned caused by something else. You might want to test for vitamins or mineral deficiencies, hormonal defficiencies and maybe a rheumatologist and endocrinologist consultation.

[sfbaygirl]

Hi and welcome. Usually people don't read this far down the threads. It would be good if you posted this as a new Question and start a thread. This way your post won't be "buried" down here. Sorry you feel so lousy. I understand you don't like interferon, but what are the alternatives?

[imnokid]

HI Again. As a newbie, I noticed this post after posting in response to the itch .It seems that this topic is where it should have been posted, so here it is again, with an addendum.

Hi Everyone
I am new here. I completed a year of hell undergoing the Peg-Interferon thereapy.
Got almost ALL of the side effects-fatique, loss of sex drive, hair loss, numbness, loss of breath, joint pain, sleepless nights, and the horrible sores and rashes. I would scratch myself to bleeding.

Anyway, after a year, the treatment was unsuccesful. I still have the virus.

It is now 2 years since I have completed the therapy, and I am still breaking out with the sores and the rash. Primarily on my calves, arms, and behind my shoulders. My Doctor said he never heard of it. What a lying mother-f**** he is. Also, my thyroid is still out of whack.

I think that they should make you aware that the side effects can continue even after the med is discontinued. If they told me at the time, I would not have undergone the treatment. I felt fine when I was diagnosed, but had gotten married and figured if I could rid my system of it, I'd give it a shot. What a fool "I" was.

Anyone else still showing bad side effects after 2 years? Any cures known? I stopped going to the Dr when he said it didn't work and if it didn't work, there was nothing I could do. I DO have my blood tested every 6 months, and all is still the same.

I wish I never heard of Interferon.

After reading the previous posts here, I see that the sex drive of others is still ongoing, as is mine. I don't understand WHY the doctor didn't tell me. He said side effects would stop after a few months. Said it took that long for the drug to leave the body. So has this **** totally altered my genetic make-up? Can anyone steer me to links of articles on the subject? I have done countless Google searches, but can find little info on post treatment symptoms.

[abbas11]

NOOOOOOOOOOOOOOOOOOOOOO.I never used any steroid anabolics in my life.I am clean of Drug Addiction for 3 year.

If anyone want to say that my side effects are result of something else and not INTERFERON SO please SHUT UP.And get out from my forum.

[illo]

Hi Abbas,

Sorry to hear your plight.  I agree and tried the natural route.  Although it helped me, the virus finally caught up to me.  I have to take action on the allopathic end, or get in line for a transplant. My choices are now few, and I don't know if I would have been better off doing the tx right away or not.  Now I am weaker from the spread of the disease.  I'm trying Alinia, but from what I am hearing, it's a 50-50 deal, and there is not enough researh for long term SVR.

The combo is a horrible tx, and the warnings tell you not to take it if you have liver disease.  Strange, eh?  

I can suggest you go to this site for help on recovery.  Lloyd has helped many in your position.  At this point, you have no where else to turn.  

http://hepatitiscfree.com/

[scubadiver30]

I lost a dear one to heroin addiction about a year ago. You were lucky you didn't die if you did heroine for 5 years. And like most say in previous posts, your symptoms resemble the ones derived from IV steroid use. Now you didn't shoot up steroids when you were weightlifting?  
Plz tell me if you did..No one is going to judge you, (many of us did drugs in the past) in fact this forum is all towards help  withou prejudice...
Sometimes weightlifters suffer from vigorexia (the equivalent of anorexia) and they want to be bulkier and stronger (even if they're HULK already) and they will go to any lenghts to grow more muscle... Your remaining sx could be a mix of IFN and previous steroid use with a tad of heroin residue.
The thing is, is that you're scaring the **** out of newbies )myself included) cause I'm starting tx on friday, and I need to know. Plz be honest with us...
Same with you Rev... you seem an expert on HCV but you don't agree on general medical consensus on medical MJ, or vectors of transmission...
I've been married for 16 years now and I have had my wife tested twice in the last 2 years (she's hcv negative and she has shared my razor and nail clippers many times)So why are you dismissing general consensus like that?
saludos to both of you

[Pauly Boy]

Your story is a sad one: if I had the types of effects that you spoke of I'd be very upset. What have the doctors said about your condition. They are the first ones I'd confront with this.
I am newly finished with tx and am happily going about recovering my former self. I haven't had any of the sexual dysfunction that you addressed but I have had certain of the other sx you talked about. I have noticed that my body needs a drastic " makeover", since I say around and slept for most of my tx. I was extremely fatigued throughout. I'm starting to come out of it and need to put a real solid excercise regimen in place because my body tone has left the building. If you're depressed talk to the doctors same for the other symptoms you expressed, they can help with some things. I'm not saying it will be a miracle cure but hey you gotta do something. Right?

I know you're angry and feel like you've been deceived but maybe there are other factors going on that are contributing to your symptoms. That's why I'd talk to a pro... I'm sure that your heroin use did not help your physical condition, who knows maybe something is happening on that front. I did a lot of damage to myself thru my addiction and it took a lot of work to get rid of a lot of the residue left from my using. A five year habit can do a lot of damage.

Whatever it is, I hope you find your way and get some help and relief from your situation. You sound convinced that it's the Interfueron that is the culprit, maybe you're righjt, but before I'd count myself out I'd try to find out exactly what's going on. Yours is the first story I've heard with such powerful post tx effects. Maybe something else is going on. Well, best of luck and keep fighting, don't give up... Pauly

[copyman]

cbee, sorry it turned out this bad for you and hope it gets better for you. like i posted above if at all possible someone should wait for better tx.

[copyman]

disagree with me. thanks for your concern but i have more then i can handle with my wife with no problems at all. but being near 50 with this disease i find myself more interested in staying ALIVE to raise my 9 yr old daughter so she is not left without a father. my point was it is not as important as it would be for a man in his 20's. so you see as much as you would like to think it is "me not getting any" for the reason i disagree with you it is not. it seems it is you who hangs around here 24/7 looking to find reasons to disagree with me and others. i just think you are a negative person and do not like you from what i know of your posts here. i hope you are different in your life outside of this forum or i really feel sorry for the people in your life. i pray for you all the time. god bless you.

[DoubleDose]

In regard to Abbas, and his sexual issues after tx, I can tell you that erectile dysfunction is a very commonplace problem during interferon therapy, and there are several very lengthy research articles discussing this very issue.  What is not often discussed, is that for a good number of us, the erectile dysfunction that began during therapy often persists long after therapy has ended.  In some it slowly returns, in others, the jury, (and the little wood-man) is still out.  Several close acquaintances who have tx'ed in the past few years are still dealing with the ED problems that began during therapy.  I also am dealing with the same problem, and my tx ended over three years ago.

This is just one of the many problems that often arise after the therapy is completed.  As to exactly what causes these problems to occur upon terminating therapy.....well we won't get into that here.  It is irrelevant for the moment....the point is that many of us are dealing with lots of very disturbing sx after finishing our successful HCV therapy.

This problem must be thoroughly investigated by the medical community, and answers must be found....or we are going to have a sub-group of treaters that will be living a very disabled life.  It is serious business.  If you read the British HCV survey on post-tx after effects you will find a significant number (over 37%) who report a wide range of very debilitating symptoms AFTER ending therapy.

The literature accompanying interferon describes many of the things that CAN happen, it just does not detail how commonplace these problem really are.

I really sympathize with the people who have treated and worked very hard to become SVR, and end up feeling like they have a devestating, or crippling illness as a result.  No particular CAUSE is being pointed out in this post, just the FACT that these people begin having all these problems upon discontinuing their greuling therapy.  It is a real problem.

DoubleDose

[cbee]

Sorry you are having these awful problems.  I am 15 months post-tx and have cleared the virus.  I left this board for awhile now because I got tired of everyone being an expert and especially those who poo pooed those of us who continue to suffer as a result of tx.  

I understand what you are going through.  I basically had no symptoms but knew I had HCV for 14 years.  This treatment took away the rest of my youth from me.  I am 48 but before the treatment I looked 38.  I was beautiful, vibrant, exercised regularly, could remember everything and for the most part was happy.  Now I am always tired, look haggard and my beautiful curly hair never came back and is very thin.  I suffer from fibromyalgia, depression and have become a recluse.  I am in constant pain and can't tell a story for my life as I can't seem to remember words - like my grandmother at 85!

As I have said before, it is not my place or anyone's for that matter to tell people if they should treat or not.  What is not okay is for people who have not had these problems to play them down in order not to "scare" people away from tx.  These problems are very real and should be seriously considered by anyone who has time on their side.  

-cbee

[copyman]

thanks for the words of encourgement. these are very important coming from someone i so admire. funny how someone as negative as you is telling me how to enjoy life! you are one funny dude and need to get a life. did tx really screw you up this much? make you this bitter? i know i said this before but as much as i like you i will have to sever our ties this time for good. i will try and avoid your negative posts as they bring me down as they do others here. you will have to go back to fighting with kailo or someone else becase i have better things to do. let me say this loud and clear, NICE KNOWING YOU AND THIS WILL BE THE LAST RESPONSE YOU WILL EVER GET FROM ME. LOVE YOU BROTHER :-)

[copyman]

glad most agreed with me. it is very rare and most likely "could" be from steroid use. i truely hope it gets better for you abbas as you are young and that type of thing can be devastating for a younger person. usually people that tx are 40+ so it is not as important or talked about that much. feel free to post the same thing over and over again. best of luck to you

[copyman]

sorry cbee i failed to mention that i have never treated so i do not know what you went through so maybe i should not be the one to comment on the pain you feel. but at any rate i do pray that you will start to feel better. no one deserves to suffer like that after being "cured" !

[bobbyullc]

i have many of the same sides 5 months after tx. i will not recommend NONE take tx but if you have no symtoms and are a low stage bx i would really consider waiting 2-3 years for the jury to be in on new treatments. i agree tx is better than death but that is not always the choices. hard decision for all.
bobby

[susan400]

To clarify my above post, I'm not saying that I haven't had post treatment issues.  I've had plenty of them, but just not in this particular area that the poster posted on.  I could go on about post treatment problems I've experienced. But, since I've posted on it before, I'll pass. I'll be glad when it's actually recognized that this as a common occurrance. I don't believe that post treatment issues are fully addressed with most doctors.

Susan

[zzzztime]

Im so sorry for what you've had to go thru. I am starting tx tomorrow and it makes me nervous but I have had hepc for 26 years and never paid much attention to it. Now however I am having symptoms that have been worsening over the last couple years. Now interfering with my job and life in general so I don't think I have any other choice. Were either of you on AD's while treating.

[cuteus]

abbas is only interested in warning people, it seems.  of course heroin did not do the damage, timedog, he is completely convinced who the culprit is.

abbas, if you want to be part of the solution, perhaps you can contact one of these organizations to report your situation:

http://www.ihealthbeat.org/index.cfm?Action=dspItem&itemID=114979

or do a web search for post market drug surveillance in your country, you can add your two cents to the data collected in adittion to 'warning' people.

and before you go off on me again for posting, remember that any and all threads are open for comments in this forum. that is why the 'post comment' is there.
be well

[susan400]

I think that there are always two sides to each health story.  I, of course, did gobs of interferon and ribavirin.  I probably would treat again, if I could do it all over again.  But, on the flip side, the after effects of treatment, especially, this particular two (post-5 mon.), are a problem to deal with.  I suppose if I'd ever had a clearance, I'd be ecstatic.  But, even with not clearing after all these times, I believe that I bought my liver some time.  I haven't had any problems in the personal area (if you get my drift), off of treatment.  But, when I was on treatment, FORGET ABOUT IT!  I was like, "DON'T TOUCH ME!"  I guess everybody's different.  I try not to lump everybody into the same category.  Some of us treat, with relatively little sides and some of us have every side listed.   Abbas, have you discussed this problem with your doctor?  Maybe it's a hormonal thing and not a treatment related problem?  Well, that's all I have to say.

Susan

[timedog]

ok if he was a drug addict for 5 years,we all know what drugs do for libdo, when were the body building years?

[desrt]

I think you were asked this before, but I've forgotten your answer. While bodybuilding, did you take any supplements, steroid or otherwise? The symptoms you describe are much more consistent with this. Or maybe the IFN triggered a reaction in something you took that otherwise would have been harmless.

[desrt]

I truly sympathize with your problems. I am one of the fortunate ones who had SVR with few, if any, long term side effects.
That said, I worked along side someone with end stage liver disease. Given a choice, I think I would choose your problems over what I watched him go through.

[copyman]

hi abbas, sorry for your problems. you have come to this forum and a few others to say the same thing over and over again. i know it must be hard for you but i have to say it is very rare what happen to you. i agree that there are many side effects with the "only" therapy available now, but those side effects are nothing compared to suffering with sx of cirhosis or liver cancer. so you see it is a tough decision for many who have advanced stage liver disease and have to use the current drugs to have a chance to live life. i agree that those that do not have to treat with the current rx should wait a few years if possible. hope things get better for you.

[orphanedhawk]

Never say never.  I thought I'd never take interferon but now with my liver worsening I've changed my point of view.  I beleive in time there will be a better treatment. As for now, I never say never.