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Avatar universal

Treatment worse than disease-last option only

my question is basically, has anyone had the horror I had? And is there a purge?
My story:I
t has been 5 years since the horror of my ribovirin treatment. I write this for several reasons, not the least of which is to warn people not to get the treatment unless you have no other options. A little background: I was diagnosed in 1994 during a routine visit to the red cross donation center as having hep-C. I don't know how I contracted it. During the next few years I was in contact with an internist. I was told that although my viral levels were low, in the 600,000 range, that they could be ecpected to increase. I had fatigue symptoms, and decided along with my doctor that treatyment was not warranted- except for changes to my lifestyle, such as quitting alcohol consumption and whatever else would ease the strain on my live. A few more years passed, and the fatigue increased. By 2003 I was convinced that an early cure would be the smartest option. I went on a course of ribovirin and peg-intron. Initially i had only the typical flu-like symptoms. Within a month or so it became more and more difficult to work. Within two months I found myself fainting while at work, so I took a leave. My appetite dissappeared, and I lived on protein shakes and whatever other liquids that didn't nauseate me. Meanwhile my viral levels dropped maybe 10%, and my doctor was concerned that any drop in dosage who be counter-productive. I started developing marked nervousness and inability to sleep soundly about 3 months into the treatment. My T-cell count was quite low, and we reduced slightly my dosage of ribovirin, keeping the same injections of peg-intron. By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing. As soon as i sat, i would start to have wild thoughts, insane thoughts. that i could not stop. I was totally non-functional, unable to drive, to shop, to do anything but survive.  My doctor lowered the dose again, but he was not inside my head. In retrospect i know that i was quite insane, thinking only about how death would effect my consciousnes, and whether I would forever exist in a state with no mind or body, alone and afraid if i did die.
I think if not for that, i would have considered suicide.
In a lucid moment at the 5 month mark, i stopped taking the medication. Within days, I was clear enough of mind to get a ride to my doctor, whom I had been unable to visit the past month due to my insanity. He chastised me for quitting the meds, then prescibed lorazepaum for the anxiety. This helped somewhat, but I was so fearful of the meds I never took them again. My  viral level had dropped to 200,000, but within a year returned to the previous 600,000. So basically I tortured myself for nothing.
Thsi is not the end of the story, however. I believe that this drug did permanent pysical and mental damage to me. I occasionally get the same horrible thoughts I did during the treatment, and only anti-anxiety meds help- I am constantly fearful that sooner or later i will return forever to that insanity. Also, I the sexual side-effects I experienced during treatment have continued unabated. No little blue pill helps as I am nearly impotent.
So to summarize:
I went through 6 months of excruiating torture and as a result:
1)my hep-c is unaffected
2)I have no sex life
3)I am on the verge of insanity on a regular basis

I had come on this site hoping someone else had similar experiences and/or if this toxin was still deeply buried in my cells (like mercury/lead or some other toxin that stays in your body) that others had found a way to purge it.
A man in his right mind would sue Shearing-Plough (who graciously suppied it to me free of charge due to my lack of presciption plan-perhaps they needed more guinea pigs to test it) but who knows what disclaimers are signed in exchange for this. Well i am paying for it for the rest of my life.
A man in his right mind would attempt to go on SSI, as I barely have the energy to finish each work day.
Or he would attempt to tell the world that being half a man has increased the possibility or dying alone.
But I did this treatment, and I fear i may no longer be in my right mind.
I beg you, do not make my mistake.
Use this treatment as a last resort.
Have someone monitor you if you decide you have no other option, and at the first sign of side effects, discuss with them whether you could live with the fact that the side effects may never GO AWAY.
56 Responses
264121 tn?1313033056
Look.  Interferon is not a people friendly drug and I'm sorry that your particular experience was so difficult.  That said, there are certainly right and wrong ways to treat.  The right way to treat is to do all of the research ahead of time.  Many treatment side effects can be lessened to some extent by helper drugs like procrit and antidepressants.  

There is no treatment protocol where someone is kept on treatment after 12 weeks with only a marginal reduction in viral load unless their doctor is a moron.

HCV is going to affect different people differently.  There are those who WILL decide to treat before the virus can damage their liver, kidneys, and other bodily systems and there is NOTHING WRONG with doing that.  

People who treat, after careful study of the treatment, know that there are options that will help treatment to go more smoothly.

I treated right away and although I had a difficult treatment, I would do it again tomorrow if I wasn't SVR.
408795 tn?1324939275
"By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing".

Sorry to hear about your horrendous tx experience, it's a very unfortunate story.  With that said, it is for this reason that this forum encourages educating yourself prior to txing.  You never know if your doctor is good enough to tx you, or if you are good enough to know when enough is enough.  Unless you know something about what to expect, don't try the tx until you do.  I stongly suggest to anyone reading this, if you are going thru anything just mentioned above in Randy's story, then maybe you should put off txing for awhile and/or re-group.  I also suggest to anyone who read above that if you have a doctor who is either not listening or for some reason you are not getting thru to him/her, that you find someone better.  Good luck and God Bless  
264121 tn?1313033056
But I did this treatment, and I fear i may no longer be in my right mind.
-------------------------------------------------------------------------------------------------------------------------------
You SOUND emotionally very distressed.  I think a good first step WOULD be to talk to your doctor about a good antidepressant.  Many times, this helps actual physical symptoms, including pain and discomfort.

Also, once you get on an even keel emotionally, why DON'T you look at an application for SSDI?  There is certainly no shame in that, as you can always go back off of it in the future if you feel more able to work then.

But I would list the emotional and health issues you are feeling, in order of the degree to which you are having difficulty with them.  And then start working with different physician's to try to get some help with your various symptoms.

When you break them down like that, its a bit easier to tackle them with the help of your medical professionals.  
388154 tn?1306365291
"By this time I was frantic. I could not sit still or concentrate, and spent sixteen to 20 hours a day walking and pacing".

Sounds like panic anguis atacks to me, I had it during my first tx also had very very weird thoughts felt like the brain didn´t functioned as it should and was getting worse and worse and I was afraid it was gonna get permanent aswell.

After 2-3 weeks everything was normal thank God and after 3-4 months I also started to feel better physically then I`v done in 25years.
First tx was litterary hell for 24weeks, and I said never that I do this again.
But after 10 months since relapsing I was prepared to meet hell a second time I`m present at week 40 and it hasn´t been at all that tuff this time.

I got to say this though, some years ago i read an articel about schizophrenia and it said people often get it between the age of 25 and 30, and in poor countries where no meds are available people get completetely healed after a couple of years, some die though. But here in our rich countries nobody seems got get totally well .
More like conserved in the disease lobotomized kind of and it scares the shiit out of me much more then this tx meds.

ca

PS. didn´t took any ADs or sleeping pills only headache pills and atarax.
Avatar universal
Unfortunately I have heard your story and various similar versions many times over the years. Some don't know, but five years ago there were still many docs who treated patients beyond 12 weeks even without a 2 log drop. Many docs still today do not fully appreciate the devastating mental effects that INF can create, let alone 5 years ago.  And complaints were not answered with rescue drugs - quite often they would result in a discontinuation of your treatment. . It was only 7 years ago that geno 1's often didn't get their first PCR until 6 months into tx.

You are absolutely correct that IFN should be used as a last resort. Opinions may differ on where to draw that line, but no one can argue the physical and mental effects that come with IFN tx. And they can be devastating as your testimony details.

I wish more people would speak up about the 'other side' of tx since no serious discussion can take place concerning this topic without presenting all of the facts, good, bad, and ugly. When the very real risks of tx are omitted or continually downplayed by some members here it does no one a service. After all medical complications are a part of the complete picture behind tx.

Thank you for sharing your story. Alot of people have suffered permanent, and in many cases,debilitating conditions as a result of treatment and their plight should not be ignored, nor downplayed. And no one should blame a patient when it is a doctors duty to explain tx and fully inform THEIR patients as to potential risks and side effects. No one patient can 'guess' all of the correct questions to ask, nor can they trust everything they read on the internet. We put our faith and trust in professionals as a matter of necessity all of the time. We have to put faith in many professionals as we can't possibly become experts in all of their fields in an effort to learn what they should actually be telling us. I totally understand where you are coming from.
Best of luck on regaining more of your health.
Mr Liver
148588 tn?1465782409
There are some people who shouldn't take IFN even with heavy doses of psych meds. This is why IFN carries a 'black box' warning, and is the actual reason Randy can't sue S-P. I treated at the same time Randy did and every dose of Peg-Intron came with a package insert with a full listing of possible side effects.
Most patients can deal with IFN psych sides if monitored by the Rxing doc. Mine asked me if I was *sure* I didn't want a nice AD almost every time he saw me during tx.
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