Coming off Treatment - Some personal notes

[Happyhungry]

This is a follow up to my earlier posts at http://www.medhelp.org/posts/show/512601  and http://www.medhelp.org/posts/show/512600  ; after achieving SVR 6 months following end of TX.  There were several questions to those posts about dealing with the after effects of TX and the specific problems that I had.  What follows is the tedious story of these problems.  Now I really don’t want to scare anyone away from TX – and that is why I have preferred to focus on its merits, which is my case have been substantial.  As I said before – achieving my SVR is worth many times the cumulative price of getting there.  However, since you asked for it…..
Bear in mind that age matters in all this, and I am over 60.  Problems of anemia and neutropenia may be a lot less worrisome to younger folk.  Also be advised that I am a bit of a hypochondriac anyway, and you may need to take a few barrels of salt with what follows.  Also, I know that it is horribly long and since I just don’t have the time to shorten it, my apologies for that as well.
First an anecdote:  There were two tree surgeons – an experienced old guy and his apprentice.   The young guy did the hard work up in the trees, while the older gave advice from below.  Now the old guy never said very much when the youngster was risking his neck climbing up and standing on thin branches high above, leaning out to chop off a branch with his lifeline in one hand and balancing a huge power saw in the other.  But on the descent the old guy was sure to say “ Remember to be careful – watch now!.   Finally, the apprentice asked, “Why do you never advise me when I am doing the dangerous stuff?  The answer came right back: “because you will always pay attention when you are doing dangerous things, but when you think you on the easy part that’s when you may stop paying attention. And that’s when accidents happen.”
Sorry to be so long winded – but the point is that coming off TX is every bit as problematic as being on it, albeit for different reasons.  In my case I stopped paying attention and went through some unnecessary stuff that it would be nice for you all to avoid.
I had loads of side effects throughout the nine months I was on TX.  They were scary and I attended to all of them with a lot of focus and attention.  It was good that I did, because I could have gotten into a lot of trouble otherwise.  Being on triple therapy (i.e. VX950 as well as INF and RIBA) as I was, seemed to exaggerate side effects and this made TX very difficult right from the start. Apart from anemia and neutropenia, skin problems and riba rage, I had to deal with the side effects of rescue drugs and learn how to dose myself appropriately given their inherent delayed reaction.  My hemoglobin would continually drop below the danger point and my absolute neutrophils would hover around critical levels.  It was panicky because every time I got my various symptoms a bit under control, I would get another phone call from the hospital telling me that I was once again in some danger.  At one point, I just blacked out in the clinic and had to be hospitalized and undergo an endoscopy to see if there was internal bleeding.  Underlying everything was the realization that since I had already had to reduce dosage of INF and RIBA because of anemia and neutropenia respectively, if I got into deeper trouble, I would have to stop the TX or part of it, and that in turn would jeopardize the entire hep C treatment proposition.

CONTINUED - SEE ADDITIONAL

[mremeet]

Thanks for sharing your story hungry, and what a story - WOW. I didn't know you had gotten into that much trouble during or after your tx. Sounds like an absolute f**king nightmare! But as you say, the SVR is the sweetest recompense. Plus, as you mention don't be so sure the tinnitus will always be so aggressive. It may fade with time, or at least become manageable. And you might be interested ot hear that I have tinnitus too. I've had it for quite a while, even before treatment. From my teenage years I was exposed to everything from gunshots, to motorcycles without mufflers, to Judas Priest concerts, to shrieking jet engines in full afterburner (lots of them). And it's taken its toll so that now I almost always have a "tone" in my head and I often have trouble hearing people clearly over background noise. I've kinda gotten used to it over the years, and it really does vary in intensity. Some days it's barely noticeable and my hearing is especially sharp. Other days I feel like I have the hearing of an old man and the ringing is especially loud. I always used to think of hearing as a static thing that, although it may slowly decline with age, basically it was the same day to day. But based on my more recent experiences with tinnitus, it varies quite a bit day to day. I'm quite certain if I had my hearing tested every week for many weeks in a row, I would find that my measured hearing acuity would be all over the place.

Anyway, hang in there and keep hopeful that the tinnitus might settle down, especially once the after effects of the interferon finally settle down. And as far as the rest, better to have washed up ashore battered and alive then to still be adrift on a dangerous ocean. In the meantime savor your victory, better days are certainly ahead.

[r4c7]

Fabulous post.  Man...could related to everything you were saying.  Currently in week 40 of 48, UND, trying to crawl to the finish line.

[jbmac]

Great post, you sure did go thru he.. with the sides and all, but the outcome mentally as well as physically was worth it. Best wishes to you and your success !!!!!

[Willy50]

It's good to read your posts again.  You've always had a gift for writing and I'm glad that that has not diminished.

I'm also glad to hear that you seized that SVR.  You worked hard for it and certainly earned it.

In addition to enjoying reading your posts and hearing about your treatment success I also appreciate reading the insights that you've gained along the way.  These are things that can't be provided by doctors, or seldom are.  There are few other sources or alternatives to first hand experience with some wisdom thrown in for good measure.

Best wishes for continued good and improving health,

Willy

[DragonSlayer45]

Thanks for sharing your experiences with all of us. It is this kind of information good or bad or in your case both that I appreciate reading.

[Happyhungry]

Well, in the three months that have passed since all this began, I have been to see a host of ENTs (Ear Nose and Throat specialists) and tried a load of supposed remedies.  But inner ear hearing problems and tinnitus are difficult to diagnose and virtually impossible to treat, particularly when you have just come off interferon and benzos, to name but a few.  There is no cure for tinnitus itself, although there are loads of snake oil salesmen out there who will tell you otherwise.  
Tinnitus is one of those things that can start quickly and act wickedly forever if you don’t protect your ears.  From the moment it does start, your life is radically changed. Unlike hep C, the effects are immediate and pretty much irreversible. Mostly, the advice I got was to just tough it out and maybe get a set of hearing aids with masking noises that overwhelm (but don’t eliminate) the noise of the tinnitus.  So watch out, all you folks out there and protect your ears properly.  Tinnitus can come from lots of causes ranging from noisy mechanical equipment, blows to the head, certain classes of drugs and even rock concerts.  So in your own interest, don’t do what I did, pay attention to these things and save yourself a lot of bother.  Earplugs are cheap.
And that is pretty much where I’m at right now.   I am discovering the community of tinnitus sufferers in the same way I discovered the community of hep C sufferers.  And the tinnitus has turned into a real challenge to hep C as public enemy No. 1.  I can’t go into places where there are echoes, I can’t really hear what people are saying when there is any kind of traffic or background noise. And most distressingly, I can no longer get any kind of thrill from music, which is now just noise.  That one really hurts.
OK. But I am learning to deal with it.  Sometimes tinnitus can fade over time, and in my case I believe that if I can somehow lick the interferon immune system after-effects in the ear, nose and throat area, the tinnitus will also reduce a lot.  I have found (finally) that if you look long and hard enough there are specialists around who can do a lot to help manage tinnitus which turns out to be one of those weird “phantom” phenomena like the guys who get pains from amputated limbs that just aren’t there any more.  There are also hearing aids and various sound training systems that can give you your life back.  So I’m not complaining ‘cos I got my SVR and feel great. I will get through this hearing problem and the technology of the new hearing aids is just amazing.  I will get my music back, one way or another.
But it would have been nice if I hadn’t screwed up the process of ending hep C TX without getting into some other kind of trouble.  And this would have been eminently feasible if I had just been paying attention.
So there it is.  Please take note, those of you taking the tranquillizers or getting immune system screw-up’s such as my rhinitis/sinusitis/mucous problem.  You need to take the process of coming off TX as seriously as you are took every other step along the course of your wonderful hep C adventure.  Hmmm.
End of Story.  Good luck to one and all.

[Happyhungry]

And so it went, day after day week after week.  And then, amazingly, it actually ended.  October 5th 2007.  A day that will live forever in my mind.  
Its worth taking a break here to note this fact.  IT ENDS!  Like everything else in this world, nothing is permanent, and mercifully this applies to the bad stuff as well as the good.  Hep C treatment is so long and one goes through so many trials and tribulations that it can seem as if it will be forever.  But it ain’t so.
The first thing to note was that the symptoms didn’t suddenly end.  In fact it took ages before the anemia and neutropenia started reversing.  The hearing and sight issues also persisted, so I couldn’t really read anymore and I still had this wretched mucous discharge sliding down my sinuses and throat.  I was still free of the virus, but was by no means out of the hep C woods.  That would take another six months.
But then, bit-by-bit, things began to get better.  After about 2 months, the anemia lifted and I began to have energy again for the first time in nine months.  Fantastic!  The cataract was now mature and I couldn’t see much at all through the right eye.  But what the hell – the left eye was working fine and cataracts can be fixed with what has become routine intra-ocular surgery.  I was off the dreaded hep C treatment and I was beginning to feel like a human being again.  I could actually do things.
I started feeling great.  I had a lot of confidence that I would achieve my SVR since I had now been virus free for almost a year. Even better, the horrible tastes I had been experiencing went away.  Food started to taste great again.  I began to sleep easily at night.  Finally, and most wonderfully, the chronic migraine headaches that had laid me out for years before TX (an effect of hep C) and which had stopped abruptly once the virus cleared, did not return.  For the first time in some 40 years I was free of agonizing headaches – and without any drugs!  Suffering catfish, batman!! Light at the end of the tunnel!!!!
So with all this good news, I decided to clean up the rest of my act and deal with the addiction I had now developed to the lorazepam. That was when I jumped out of the frying pan into the fire. To be more specific, that was when I started climbing down my tree without the advice of some clever old codger below crying out “Now Pay Attention!”
I reasoned that I had licked interferon, ribavirin and VX950 as well as assorted other drugs, and I was not going to let this pesky benzodiazepine get in my way.  I would just take whatever sleepless nights I had to and tough it out.  So I stopped taking it there and then – I went “cold turkey”.  I failed to check the results of doing so and this was a big mistake.  It turned out that in conjunction with the after effects of interferon this can cause funny things to happen with the inner ear.  In my case, I lost  high frequency sensitivity in both sides. I later established that this is a known side effect that can result from rapid reduction of benzos.  If I had only been diligent enough and paying attention on the way down, I would have got a grip on my inherent impatience and checked the benzos more carefully.  I would then have stopped them  slowly over a period of some weeks or months.  Instead it was “damn the torpedo’s – full steam ahead” for me – the very attitude that gets us into trouble.
But that was only part of it. Like mremeet and others, the TX experience had left me somewhat overweight and flabby.  All those sweets and mints!  I needed exercise and I felt compelled to act furiously.  After all those drugs, it was time to get myself back in shape with a vengeance.  Apart from exercising, since I was feeling so good, I started to do various projects around the house.  One was some carpentry work that required use of a power saw in a confined space.  The noise was terrific.  Unfortunately, since I was already now a bit deaf in the high frequencies, I could not feel the intensity of the noise so I did nothing to protect my ears.  What an idiot!  Result – the incipient deafness became a permanent condition and I got myself a severe case of tinnitus.  
Now I don’t want to exaggerate the risk of benzos, nor of interferon, because my circumstances were unusual.  Most folks would have been sensitive to the noise and stopped what they were doing.  But with my mucous discharge, and blocked ears, I just didn’t really notice what was happening.   But it is worth noting that interferon can sometimes accelerate deafness in the same way that it can accelerate eye degeneration and in combination with benzos, both can become problematic.  And this kind of hearing and vision loss unfortunately, can become a permanent condition.  If you check the archives on this site you will find various testimonies on hearing and sight degeneration linked to interferon.
Now tinnitus, it turns out, is no laughing matter.  You get these noises in your head or your inner ears, and they can be real loud.  The noises can be of varying types, but mine was the high frequency whining of a poorly maintained electric saw.  Its intensity is hard to describe.  It happens in the middle of the head and it goes on all the time 24/7 which means that you can’t do much and sleeping is a big problem.   (Déjà vu all over again).  You start obsessing about it and things begin to go crazy.  Since I was still blocked up with the rhinitis and the immune system after effects of interferon (which appear to last for a long time), I had additional ear sounds of various kinds and the inside of my head became an absolute zoo. So just when I thought that everything was on the up and up, there I was, back in the woods again – this time with a severe case of inner ear problems. As Frodo said as he finally approached Mordor  “don’t adventures ever end…..?”

[Happyhungry]

Feeling sick as a dog throughout and having lost a lot of mental stability I nevertheless had to aggressively balance all this and take some difficult decisions about being in a medical trial).  This all took a lot of concentration over a sustained period.  To make matters a bit more complex, I was one of those who just can’t sleep on TX.  I would nod off during the day at times but could never sleep at night when I really needed to.  So during the night, I had no recourse but to just sit out my various sides alone in the dark (electric light would hurt my eyes). The net effect of the lack of sleep compounded with the inherent Ribavirin “rage” effect progressively drove me crazy.  By month 6 or so I was out of it and losing my crucial ability to make decisions.  Well I didn’t have “suicidal ideation” as listed in small type on the interferon package, but I was certainly getting nuttier and nuttier and THAT was in turn was definitely compromising my ability to manage all of sides and the complexities of multiple drugs.  
I could see all this happening and knew that I had to do something and my decision was to add yet another drug to my personal cocktail – in this case Lorazepam (also sold as Ativan) an anti-anxiety drug belonging to the class known as benzodiazepines.  Now “benzos” are known to just about everyone and widely used for anxiety, depression and related problems. They are addictive and you need to watch out with dosage, like everything else in this mad hep C TX adventure, but they were effective in letting me relax and sleep and thus maintain my mental abilities.  In no small way, I attribute my successful passage through some 40 weeks of TX to these little pills.  
However, at the same time as all this was going on, around month 5 or 6 I started developing chronic rhinitis and/or sinusitis resulting in the most disgusting mucous discharge running down the back of my throat.  It tasted horrible and made everything else also taste the same.  I infer that this was some kind of immune system chaos that interferon therapy can cause.  It’s hard to describe how awful it was.  I had to continually suck on pastilles and sweets or extra strong mints – anything to keep this muck from overcoming my senses.  I tried all the available antihistamines and decongestants but nothing worked.  I just had to put up with it and tough it out as best I could.
Around month 7 or 8 the constant mucous drip thickened and started to impair my hearing.  I couldn’t make out some sounds very clearly and I started to feel blocked up in the ears.  While this was happening, I also started to lose eyesight in my right eye.  Well I had had a cataract beginning to form before I started TX and it turned out that the interferon treatment had the effect of speeding up the rate of development of said cataract.  Each week I would lose a bit more focus and had to get my glasses prescription changed over and again.
So there I was, with this wretched mucous fouling up each moment, trying to hold it all together through those various encounters with anemia, neutropenia, riba rage and skin rashes, with the little sanity provided by a few hours sleep each night courtesy of the benzos, day by day losing a bit more hearing and a bit more vision.  There were times when it all felt like some kind of dress rehearsal for dying – you know, surrendering your senses and abilities one by one and ending up just lying there losing all sense of well-being.