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Residual Issues After SVR - To All

It's getting close to 16 months after ending tx, and getting the SVR, and I am wondering what everyone else is experiencing after their own successful treatment.

I continue to have neck and back stiffness and pains, on a periodic basis, as well as very dry, gritty eyes.  

I often feel a pressure in the head and neck, which, when at it's worst, can really make you feel dizzy, and off-balance.

My glands are frequently mildly enlarged on the side of my face (parotid glands), though they do not feel sore or painful.

I have had several tooth infection problems recently, calling for root canal and antibiotics, etc.

My skin, on the other hand, is pinker and more healthy than in years, and my energy level is getting better all the time.

My voice has gotten clearer, stronger, and I do not have the constant throat clearing or sinus problems that I did before and during tx.

Motivation waxes and wanes, and sometimes I feel like a dynamo, while at others I feel like sitting and doing nothing, or just sleeping.  Stil experience periodic ED, and believe the long dosing of Peg-Intron caused much of this problem, but also suspect the prior effects of the virus as well.  ???

I would be interested to hear how everyone else is doing after their tx, and especially the SVR's among us.  It is getting to be a bigger and bigger 'club' every month.  Treatment regimes seem to be much more effective with the new Pegs, and better dosing strategies.

I hope all our members are doing well.
We are expecting a blizzard, so it's time to hibernate!

DoubleDose

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Avatar universal
New Sojourn, your post was inspiring to me.  I've always been confused when I read about hepC symptoms because they sound like aging symptoms to me.  I look around and other people I know who do not have hep C have symptoms similar to mine.  But I think it's a matter of degree, and I'm not them. I control my weight, eat healthier and get more regular exercise than a lot of people my age, so why should I feel like them?  I am really hopeful that, once I get on the other side of treatment and detox of the meds, I can look forward to losing some of the hepC symptoms that drag me down, fatigue being a big one.

Doubledose--I'm so glad you have the spirit to be an activist about this nasty disease.  I love it when people get out there and help dispel ignorance, make positive change.

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Avatar universal
Very interesting narratives, my friends.  Thanks so much for taking the time to post them.   BTW, there has never been any doubt in my mind that  the "IBS" symptoms that have plagued me for so long are HCV-related.   Your encouraging reports are a profound inspiration to me as I serve my time on tx.  

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Avatar universal
I was dx in 9-2001.  started tx-24wks, 2b-%-2002, was cl 5-2002 and fin tx 10-2002.

The sicker you were, the better you'll feel.  I was so sick, tx felt 'good'-esp mentally b/c there WAS something wrong all those 37yrs.

The feeling of wellness comes @ odd times--usually when looking back and realizing how far I've come-healthwise.  This 'symptomless' disease has many symptoms--some that we come aware of after they go away.

I wish people would stop spreading and believing that this is a 'symtomless disease' b/c when its gone, the mental and emotional benefits are enormous.  The joint pain and all these other 'old age' things are not old age b/toxic build up and that's what a sick and damaged liver does-allow toxic build up.

The 'lifestyle' I adopted during tx, I've kept up b/c now I'm into healing the damage done.  Tx'ing the virus is only a small part on the road to health.

So I might not notice a general well being b/I'll all of a sudden notice that my nails are incredible strong, my hair grows twice as fast, I suddenly am filled w/restless energy, I sleep well and wake up rested.

My only problems are due to the condition of my liver--so all you who are waiting to get sicker before tx'ing--you guys have your heads up your asses.  Oh what I would give to have a 'good' liver and be free of the disease, not a bad b/diseasefree liver.
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Avatar universal
Wow Chevy, you have one heck of a memory-that info should be helpful I,m sure.(wish I could retain info like that)

DD, as you know, I'm not svr but I did have severe depression during tx(no AD's by choice) and it took 7 plus months to go away post tx. I am now my pre tx self except for still a slight ED problem but that is also less and less. Basically-8 months post tx happy camper. Excercising and eating well.

Deviating from subject, I will not biopsy at this point as doc said it is most useful pre-tx for patient decision making.He knows I am unlikely to re-treat.He wants to watch bloodtests closely every 6 months and feels I have no signs of serious liver damage(we don't know for sure of course). So I will get on with my LIFE!(not going away however!)

I love you people!
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Avatar universal
Thanks for the detailed description of your sx history.  You are very thorough and detailed.  I also had the 25 years or so, of 'intestinal virus' that you experienced, which has also resolved after tx.  I personally do believe that the intestinal issues were a direct result of HCV, having read that the virus is routinely being found in the intestinal mucosa by gastroenterologists and other researchers,  Maybe it does the same things to the intestinal lining as the liver, but it gets lots less attention from the research community, because it does not provoke a life threatening reaction, as in liver failure.
I know that over the years I suffered from continuing loose bowels, stomach discomfort, and sometimes pain, wierd digestive noises constantly, and overall a feeling of dyspepsia.
This also may relate to the joint pain issues, AND the fatigue and brain fog problems...in that, if the virus actually does affect intestinal tissues, then it's not much of a stretch to picture it also being in the connective tissues in joints, and also the brain, as many researchers now claim.  The mainstream HCV community continues to repudiate the possibility that the virus goes anywhere other than the blood and liver, but at this point I am not sure how they can make this claim, in light of many recent research articles.  And I really do not know why they are so resistent to exploring these issues and trying to determine the full extent of this virue within the body.  It's as if the liver experts have staked a claim on the virus, and do not want any other medical specialties to be involved.  Only to all of our detriment.  

Thanks for your continuing involvement and enthusiastic participation on the forum!  You help to keep everyone thinking and communicating.  Since becoming SVR I am feeling a bigger need to contribute to the HCV community, and to help push for greater knowledge in the medical community, which I did not have the time or mental energy to do before or during tx.  I also wish that the 'celebrity' types that have been impacted by HCV had just a little more to contribute publicly than the Pamela Lee Andersons of the world.  We need more public spotlight on the disease, and more government involvement, including the kind of research effort and dollars that are provided for HIV.
This health threat is still 'out there' and to a large extent invisible until people begin dying from it. My concern is that there may be more than meets the eye, if HCV does indeed infiltrate all these other organs and fluids.  There is much more to be discovered, and the treatments are still in the 'dark ages'.  My best wishes to you, and it sounds like you are well on your way to long term SVR!!!  I hope you continue to feel better every day!

DoubleDose
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Avatar universal
That's very high praise coming from you-thankyou. Frank
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Avatar universal
hi there. ive been SVR  since aug 03.   my energy is much better though i have  had to work at it.  like going to the gym to build back strength after tx. and staying with it.  i still suffer dry eyes, some days worse than others depending on how much i read, etc..   i seem to be left with a chronic sleep problem.  tx.  wired me to the max.  i envy the ones who can sleep.   i do use some meds but as little as possible because my brain is much without sleep.  i had a lot of anxiety after tx. but that has gradually gotten better.  very slow to improve that one for me.    my acid reflux that tx. caused is finally better at least for now. i actually at pizza today.   i have some pain in my neck and wrists and other areas depending if i do the wrong things.   otherwise grateful for each day.     but yes there are trade offs.....
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Avatar universal
Is that why I am having crazy dreams?  Geez, one night it was that I had a "cat" nose.  Some of them are so far off the wall I wake up so glad to know it was a dream!
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Avatar universal
I'm hoping for an SVR (anxiously awaiting the results of my 3-month test).  I don't think I have any more sides except for one - those weird dreams!  Does anyone else still have these Ribi-induced doozies?  At least I don't have the insomnia anymore.
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