Post TX health concerns

i most likely will be starting treatment soon and it is good to hear about the tx being "managable" for most, but what concerns me more is what i read about the post tx symtoms (symptoms) and the harm that is done to your body from tx. seems almost everyone has more things wrong with them then before tx. are we really beating this if we go svr then have several other things wrong with us, some things very serious and all affecting the quality of life. sounds like if you beat HCV you have 3 other things wrong with you to now live with. is this true for most? is there any data and/or percentages of what happens to people that treat with combo therapy in regards to "post" tx? thanks and god bless

PS, i also posted this by mistake as a reply in another thread.

[jmjm530]

Don't know what more can be added as we've pretty much exhausted this topic the past couple of weeks. If you scroll down your screen you can pretty much pick up the relevant threads by the titles. But I'll just briefly add that are little if any studies I'm aware of regarding post treament side effects. That fact neither supports the proposition that they are very common, nor does it contradict it.  All the best luck moving forward.

-- Jim

[jmjm530]

Maybe these links to recent threads will help you out. Just copy each link and then paste it into your browser address bar.

As I said, we've pretty much exhausted the subject recently as well as many  of our members discussing it :) I'm certainly not trying to stiffle any further discussion, however weekends tend to be slow and a lot of people may not be posting. This then should give you lots and lots of opinions to look through.

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html

[Algernon]

I'm just one person but here's one more anecdotal account:

I did 24 weeks of TX for GT 3a (high dose of Riba).  I've been off TX almost six weeks now.  I was one of the people who complained a lot and worried a lot about post TX symptoms during my first 4-5 weeks off TX.

I can now honestly say that I feel at least 90% of the way back to my baseline.

[cuteus]

no, there is not a lot of data on long term problems, *and not everybody ends *up with post tx **issues. what *percentage *does, can *only *be *guessed *from *the percentages* of *side *effects while **on *tx. **If ***you look at the inserts and*their table of side effects, the *most you could guess is that the same percentage might end up with those things,post tx. new *things not *mentioned in *the inserts, are harder to **guess.

[cuteus]

**keyboard problems,***help!!!!!

[jmjm530]

Cuteus says: *the percentages* of *side *effects while **on *tx.
-----------------------
Is this a post treatment side effect? Hope you haven't totally lost it. I'm concerned :)

[can-do-man]

Got a hammer?

[can-do-man]

I've heard kick boxing is a post sx....... 'OUCH' there you go again, be another hour before i can stand up right.

[jmjm530]

cdm:be another hour before i can stand up right.
-----------------------------------------------
"Another hour"? Sounds like wishful thinking.

[beamishboy]

my kind of tech support

[can-do-man]

Hey, i can always think im the little engine that could.:(

[Algernon]

I thought you were just swearing a lot.

[jmjm530]

Alg to Cuteus: I thought you were just swearing a lot.
-----------------------
No. It appears to be asterikitis, a common post-tx sympton caused by persistent or occult (keep getting them confused) keyboard activity with the Shift8 keys. Studies suggest however that prognosis is good with time. However, as a pre-emptive strike against any advice Forseegood or Chevy may offer, do not under any circumstances try and loosen the keyboard with Aloe Vera Oil.

-- Jim

[can-do-man]

Hey gal you behaving? if so why? I've been trying my durnest today.:)

[can-do-man]

Well i guess my drunkin salior theory is out.

[jmjm530]

Definitely the best "post-tx" thread we've had to date :)

[Algernon]

Dangit, Jim.  Just when I th**nk I'm start**ing to ma**ke a full***   recov*****ERy, I find out about a**noth**er s**ide  effffff*ct.

[jmjm530]

Oh Sh**  It seems to be *** contagious **** and spreading rapidly * from keyboard **** to keyboard **** WILL SOMEONE PLEASE CALL THE CCD IMMEDIATELY*****************************************************
****************************************************************

[Algernon]

Yeah, I can't explain it.  Next thing you know I'll be shoplifting.  That Coast dude/chick riles me more than a six pack of Riba.

[can-do-man]

Are your keyboards cordless? If so just borrow some batteries out of the.... HUH HUH... Never mind

[bobbyullc]

did you have a biopsy and what stage did it show? biggest question of whether to tx or wait a few years.
i have finished 5 weeks now and still have some sides but had to tx as i was a stage 3.
bobby

[Algernon]

Great news.  Just smear a gob of Gold Bond on your computer screen.  Should fix the *** problem right away.  If that doesn't work, call your doctor's office and listen to the recording about going to the nearest emergency room.

[jmjm530]

Tried the Gold Bond and the screen looks very fuzzy now but fortunately it doesn't seem to itch.

[can-do-man]

Chev, why you suppose doubledose has extra batteries?

Algernon, Odd on my doctors recording it  says if this is anyone but can-do stay on the line. Wonder what he means?

Oh Well, i better hope cuteus keyboard stays broke a looooong time.

[Algernon]

Oops.  I guess my screen**** just looks  fuzzy*** too.  But if it gets ***smeary enough**, you can't really make out the ***.

[can-do-man]

says......Tried the Gold Bond and the screen looks very fuzzy now......

How many times you been told to keep that stuff out of your eyes? I don't care what that gold bond study says... JEEZ...

[copyman]

thx jimjim for those url's, i do not know how i missed those threads some interesting posts to say the least. after reading all the posts seems like the people that elect to treat are kind of like guinea pigs and most do have post tx symptoms. furthermore i do not think the drug companies want to publish reports on this as it may stop some from starting tx and this would take money out of their pockets. with the consensus on this site tx should be avoided at all costs if you are lucky enough to have little liver damage. just my opinion of course.

[jmjm530]

Look, my eyes burn, I can't see, I'm starting to slather (whatever that means)all over the place, but at least my eyes no longer itch.   Will someone please thank NY Girl for me. That Gold Bond tip of hers sure works hard and fast.

[jmjm530]

Hope the links were helpful. You might also want to jump over to the  Janis web site and ask the same thing for different takes. Or possibly just look through their archives as it may be easier to search there than here. janis7hepc.com

Treat or not to treat is such a very indivdual decisions. It's not unusual for two intelligent people (or even two doctors for that matter :) ) to look at the exact same data and come to different conclusions.

I will say this however from a feeling -- I repeat "feeling" -- I got from a hepatologist recently. My impression was that he felt his job was successfully over after I SVRd. You know the ole' joke, the operation was a success but the patient died" :)

Anyway, don't be scared -- or lulled into complacency -- by any of our opinions. Take it all in, speak to a doctor or two, come to your own conclusions for yourself. Good luck!

-- Jim

[jmjm530]

Well, since I secretly hold a doctor of asteritik degree, I think it's OK to make an internet dx of stage 3 asterititis which indicates significant keyboard damage. Yes, the H*LL with watch n wait, double-dose the Aloe Vera.

[Califia]

Boy, did this thread degenerate fast!  But thanks, Chev, for that truth telling. Copyman, I'd like to answer your question from my own personal experience,  as accurately and directly as I can.  I speak as a Geno 1 who's struggled a long time with the disease.  Ddx'd back in '90, treated first time in '90, with autoimmune hypothryoidism as my reward for "failing" treatment.  So, yeah,that was the first time I got mugged by interferon.  Really pissed me off.  And..

Knew immediately I wanted to treat again w/ the advent of pegylation and the introduction of riba.  Couldn't do it until mid-2004, when my life circumstances were finally in order.  I expected a rough ride, as I'd already had one and this treatment was far longer.  But what was stronger than my anxiety was my excitement about the new odds.  (I celebrated the night of my first shot.  Giddy as a six year-old.)  Willing to put up with anything that came my way, and got it. Went through the full menu of side effects.  But begged to extend treatment, because I wanted so badly to nail it...

Ended damn strong, sanity intact, feeling like a winner of a long, difficult marathon.  3- and 6-month PCT's showed 'undetected."   Liver enzymes are still normal at 11 months out.  I MADE IT.

Yeah, I developed really unpleasant neuropathy and burned out my stomach lining and developed antibodies to a major digestive enzyme, etcetera, and now there's one more chronic condition to contend with--

& as a result, btw, you all will appreciate the irony of this, I'm shooting up again on a regular schedule, and boy I've gotten really good at injections now, piece a cake, especially when the substance is cheap 'ol B-12 and not a drug that costs a zillion dollars per syringe...

I make light, but for me the aftermath of tx has been occasionally nasty, but heck, the neuropathy will resolve eventually, not sure when, but probably in a year or two...it's hard, but I'm all over it like a terrier, and the digestive issues, ditto

and you know what?   To answer your question about the benefits of treatment vs. the risk of life-long problems?  NOT EVEN CLOSE.   I'd still chose treatment, as imperfect as it is.  I'm now 55, on the verge of Stage 3.  No luxury of waiting for something better.   You got me?  NOT EVEN CLOSE.

I am one of those people who thinks that folks with minimal liver damage, no  extra-hepatic issues and very minor inflammation should wait for the next generation of drugs  AND utilize alternative therapies while waiting to maintain that happy status quo.  But Hep C MUST be treated.  You cannot ignore it. No question about that at all.

And as for damage?


If the lightning don't get you, the thunder  will.

[Mister beagle bailey]

Hi there, I'm  going on 5 weeks post tx and feel almost normal again.  I didn't get anything new from doing tx.  I was a 2B so only did tx for 24 weeks so the poison may take less time to leave my body.  Some people take longer to return to normal I have found.  Hang in ther, it will get better.

Beagle

[DoubleDose]

Great thread.  I like your style and attitude!!!  Our experiences are very similar, as you may have gathered in past posts.  I agree totally with you...I would do it again in a heartbeat.  Even though I have a basket of post-tx problems to deal with, so what!  I beat the virus, my liver is no longer under attack, and in many ways I feel tremendously better.  Now the fact, and I do mean FACT (contrary to what some want to believe) that there are post-tx problems in some or many of us (or few, we really do not have the stats yet), is just another part of the story.  I am not whining or being anti-tx when I describe my post-tx issues...I am just saying that this is the deal!  I live with it, I will address these problems, and hopefully they will fade away one-by-one as time goes on.

Keep the great attitude, and the humor.  I make light of all this stuff everyday, to keep from letting it get me down.  Life goes on, under whatever circumstances, and it is up to us to make the best of it!  I am going to have fun today!

See you later.

DoubleDose

[amirtracy]

Thank you. That was one of the best things i've read in a long,long time.

I'm saving this thread to re-read whenever i get whiny 'cuz you are RIGHT ON THE MONEY.

tracy

[Kalio1]

Thanks for your great post. Wish I could write that well!
Hope you are doing well and the neuropathy clears up. It's bad enough to have to endure this medieval treatment regimen but to have to face issues afterwards seems doubly cruel. My heart goes out to everyone having post tx problems.
I had neuropathy from an injury and although the doctors were discouraging, I was able to get rid of it, took a few years. Good luck with yours.

[Califia]

And thanks, you all, for this positive feedback loop.  It helps me to thrive, too.   Chronic health problems are so difficult--in fact, you should have seen me on Thursday, utterly wretched, laid flat by a thousand pinpricks and sinking into a bottomles mass of self-pity--but we all bounce back, battered but newly resilient, the life force singing in our ears.

One day at a time, that's how it goes.   Amir and Kalio, hang in there.  And Kalio, your example is very heartening to me.  Thanks much for sharing that.

The deal is I don't take no for an answer.  When conventional medicine has made a hash of things, or offers no solutions in the first place, I turn to the margins and look to the weedy stuff.  Herbs, mushroom powders, vitamins.  Discovered a mushroom called Lion's Mane (Hericium Erinaceus) which has the happy effect of stimulating Nerve Growth Factor.  My ever cautious acupuncturist said no--avoid the stimulation--but I've taken it for 6 weeks and have noticed a subtle but significant tapering off of neuro symptoms.  (If anyone's curious, google Paul Stamets or fungi perfecti.)   Or maybe the tweaked nervous system and tendons and ligaments are finally calming down on their own--who really knows?   Now there are other hot spots flaring up, but the thing is (I always have to remind myself)  not to panic, calm down, get into problem-solving mode.  

A serene Sunday to you all.

[cuteus]

geesh!! I  never would have guessed all those ***would cause such a commotion! Hoy canoli!  my keyboard just got possessed and typed on its own over and over> could it be a virus? ironic,  wouldn't it? The other keyboard was typing things on its own also, and then it would stop typing. I got this other keyboard working for a wk, and then the ***exploded! It is a Mac, so not many viruses come my way, but what else could it be???

and you guys turned my keyboard illness into one of the funniest things lately! LOL
no LT effects, no kicking, no drunkeness, etc. just a mild keyboard flu! We can turn threads here into the most hilarious things sometimes. I still remember GApeach and the Bishop threads! this place is the best!

copyman, I don't advise avoiding tx at all costs, unless you can learn to cohabitate with HCV for years and have no symptoms from this disease and are young enough to wait.
I enjoy having no HCV to think about, and TG no ill effects from tx, but the stuff I was hoping would go away with tx, did not. So, I am trying to find a way to manage the chronic pain leftover from HCV.  There is a new study from the Mayo clinic on accupuncture and fibromyalgia, I wonder if it works on the other pains?\\

Califia, very nicely said! there is a possibility that neuropathy will get better? I thought that it doesn't in most cases. I hope my belief is wrong.

I need to find a way to deal with arthritis besides Vicoprofen. Why couldn't I be one of the lucky ones who loses the  extra hepatic symptoms after SVR?
No matter, I had said that I would rather be SVR and with the HCV pains leftover if need be, than HCV positive and with pains. no brainer

[cuteus]

the gold bond did not work well, but following the advise of a blonde joke site, I tried the white out on the monitor and see! the ** are not there, or ...are they?

[can-do-man]

Hmmmmm, after reading that post. I'm kinda leaning back towards the drunkin sailor theroy.:)