Post-Tx Survey Responses: Symptoms, Problems. A Good Read!

[DoubleDose]

For those of us who have not read the results of the UK generated post-tx survey, which I believe was disseminated globally, here is the link.  And we wonder why we might be feeling a little 'under the weather!!!"  Take a look at the ongoing problems, and the percentages of respondants experiencing them, even two or three years post-tx.  They look pretty familiar to me.  The most telling survey question is:  Do you feel better or worse after completing the tx.  


Yet the doctors largely still say 'no such thing'.  Recovery usually takes two or three months...a year at most.  Ugh!

http://www.zoomerang.com/web/SharedResults/SharedResultsSurveyResultsPage.aspx?ID=L22KYULCZHEN

DoubleDose

[whinybutwell]

I'm pulling/praying for ya!!  I just got my blood taken today for my SVR PCR today, so i'm waiting on mine too.  May we both be UND!!!!  
Let us know.  SVR all the way baby!

[FloridaMouse]

I've been kind of avoiding this thread because I hate to bring negative news to anyone.  But after pondering this a bit, it's a fact of life that some people do indeed have a hard time with tx and some people do wind up in a little worse shape than they were when they started.  

I unfortunately am one of those "less than 1%" people that wound up with Rheumatoid Arthritis because of treatment and I do indeed feel worse post treatment than I did before I started treatment.

BUT ....

1) I have absolutely no regrets for treating.  I have a stage 3, grade 3 liver and I will do what it takes to save me and my liver.  I cannot die from RA but I can die from a crappy liver.

2)  I knew the risks when I went into treatment, I knew my mom had RA and my risk might be a little higher.  I chose to take the risk for the reasons set forth in 1).

Personally, I'm not ready to check out and I will do all that I can to keep from crossing that line to stage 4.

Just my opinion and of course we all know that they say about those.  

Mouse
Genotype 1a, Stage 3, Grade 3
finished 48 wks of tx on 4/13/07
Waiting on results of SVR PCR taken 9/20/07
Hoping for SVR baby!

[jmjm530]

I think you have my posts confused with someone elses. I never said the study was "skewed toward the worst in many ways". In fact, I thought the study consistent with what I've read here.

[whinybutwell]

Wow, i got something totally different from your posting i guess!  I felt that you had been pointing out the flaws in the study, so that we could have a better informed reaction to it.  I hadn't considered all that when i first read it, and called a friend of mine freaking out (i'm almost 6 mo's post-trx and feeling worse than before trx and having my expectations of feeling "better than i have in years" being rudely dashed) because of the answers to the question: Do you feel better or worse after completing treatment?  And she pointed out to me many of the things that you pointed out in your post -- basically that it's skewed toward the worst in many ways.  Which gave me hope that maybe there is more than a 1 in 3 chance that i could -- possibly -- end up feeling better.  Which IS in large part why i did the trx, even if it wasn't a totally educated decision.  I also put off doing it for about 7 years, being told a better trx was "just around the corner" way back then, and meanwhile just feeling gradualy but consistently worse each year.  
Anyhooo....i appreciate everyone's opinions (except for attacking ones) and have found you all immensely heflpful, even though i just found the forum a couple weeks ago.  And perhaps wanting to be hopeful about continued recovery is a bit deluded, but i also think hope can be amazingly healing.
Thanks to all.
Whiny

[CockSparrow]

You are making sense. I realised you were only stating your opinions.

Think I might have to put this topic in with Alcohol and Sexual Transmission and try and stay out of em. Yeh right that'll last. Lots of strong views and strangly I can see both sides.

There is a bit of a parallel universe feel about this ay
All the Best
CS

[jmjm530]

Why do I feel like I'm living in a parallel universe with this discussion. LOL. In the future, it would be nice if folks kept the discussion to whatever forum it started on first.

No, I don't get the "feeling" I'm being picked on -- when I get accused of "cherry picking" or accused of hypocrisy (or maybe I'm being accused of lack of sensitivitty?) (Valtod: To tell somebody to wait for better stuff is easy, especially if you have done Tx and have SVR" --

Yes, I am being "picked on" in the sense that what is being debated/addressed are not my opinions but my motivations. I try to as much as possible to deal with the former, and as little as possible to deal with the latter. Hopefully, I'm making sense here.

-- Jim

[CockSparrow]

The thread this side is much less heated than on the other side.
I am one of those that felt better during Tx and only got better after Tx. Been 5 months post now.
Dont have the lethargy or Insomnia or fatigue that i used to.

Jim/DD your post Tx sides are a must for everyone to take note of. It goes into the risk.benefit equation but not everyone comes out the other side worse off. H3ll i didnt even SVR and i cant wait to go again and probably for 48 weeks this time. I'll DoubleDose too.

Jim I get the feeling that think you are getting picked on. I hope that isnt the case.
I've got a lot of time for your views even if I dont agree with some of them, you make me think.

CS

[sfbaygirl]

you said; Another point to notice is the bias: People who feel well after therapy and have SVR, often do not want to continue thinking and talking about hep, they are just happy to be back to life. The disappear from the scene and do not give input to surveys. If you still have big problems, you are more interested in things. That is a bias in hep forums like this too!

That seems to be true some of the time.  I am grateful to those that are SVR return to help those of us that are not, like Jim.  His help, especially to those new on tx is wonderful and there are lots who drop in occaisonally.  Of course those of us who have more problems will tend to be here more often, but not necessarily.  I doubt this board with be as good without all the pre, tx'ing and post tx'ers in the group.  

As far as bias I am sure some people angry or VERY opinionated could post to that survey a bunch of times, which skews the results.  I haven't posted to it yet....read it, but like you I don't have a lot of faith in surveys like this.  It was interesting though!  I do wonder how many who posted are SVR and how many are not.

[sfbaygirl]

you said; Another point to notice is the bias: People who feel well after therapy and have SVR, often do not want to continue thinking and talking about hep, they are just happy to be back to life. The disappear from the scene and do not give input to surveys. If you still have big problems, you are more interested in things. That is a bias in hep forums like this too!

That seems to be true some of the time.  I am grateful to those that are SVR return to help those of us that are not, like Jim.  His help, especially to those new on tx is wonderful and there are lots who drop in occaisonally.  Of course those of us who have more problems will tend to be here more often, but not necessarily.  I doubt this board with be as good without all the pre, tx'ing and post tx'ers in the group.  

As far as bias I am sure some people angry or VERY opinionated could post to that survey a bunch of times, which skews the results.  I haven't posted to it yet....read it, but like you I don't have a lot of faith in surveys like this.  It was interesting though!  I do wonder how many who posted are SVR and how many are not.

[returntosender]

We dont have too many left to do - my own 1020s needs to be in by Monday but it is pretty much done.   This year was somewhat easier, compared to last year especially.  

Thanks for the kind words.   Always nice to hear from you.  I do feel better today.  I didnt take my usual dose of benedryl last night and not only did I sleep better but I didnt feel quite as dizzy today.   Maybe it was a simply as that.  I started the benedryl because it seemed like a pretty safe way of getting some help sleeping but I have probably been taking it every night now for a couple of months.  Probably a bad idea.    One of the things that makes this a tough solve is that I am now taking blood pressure stuff, testosterone, protonix and carafate along with a few other ditties.  What is happening is that I am having sides from the drugs I am using to treat the sides.  What a trip!  Anyway, good luck through the end of the season.   We are almost ready for the new one!

[jmjm530]

Thanks for chiming in. The idea that someone who treated and is SVR, can't offer a valid opinion is ___________ (you fill in the adjective) :) Sorry Drofi got my wrath but it was directed to all similar/practically identical statements that have been posted here at one time or another. Maybe they think that now we are SVR we don't want anyone else to be? You know, like some kind of exclusive club.

This place by its very nature -- most here are treating or about to -- has always been pro treatment. Many who decided not to treat, simply don't come to these types of forums. I know I didn't and in fact didn't show up there until after I made the decision to treat. Think it was week 1 of treatment when I posted the first time.

I remember back then just how pro treatment things were. I was actually criticized for considering treating only 72 weeks (I was RVR mind you) because a very popular internet doctor was advocating at least 2 years for stage 3's, and many were following his advice.

You hit it on the nail, when you said " But if I had a loved one who found out they had HCV, and the liver damage was minimal, and they had few problems symptom-wise from the virus, I would most definitely recommend that they wait a couple of years, while monitoring liver health closely, and see how the Vertex, Inf. Riba cocktail pans out."

In a strange but nice way, everyone here is a "loved one", partly because we're all on the same strange journey. And that is why I say what I say, and hopefully that is why others who disagree, say what they have to say.

Be well,

-- Jim

[sfbaygirl]

RTS, DD, Frijole, Jim,  I appriecate your honesty of how you feel post tx, always did during tx too.  As one of the post tx club now,  I too have life long problems to deal with b/c of tx. Blood thinners, autoimune disease and CFS. I can't get the energy back to even think about working yet. My libido is gone. I can't say I regret tx,  b/c it most likely gave me some relief from the pre tx sides I had, now I have others.....  I know I will wait for awhile to re-treat, if I ever do again.

Interesting to hear you talk about things seeming out of whack. It sounds how I feel ;a lot of the time. I keep waking up wanting to get up and get going, it doesn't happen and I'm lucky when can muster up the energy to do much. Yesterday, I had to read hundreds of pages of John's brief and trial transcripts. I am his editor and help him what arguments are strong or not. I love it and we have won the last 5 cases!  After I was done about 6pm,  I was so worn out I was asleep at 7:30.  Still tired today.  I had so much energy before, I hate this part.  I am 6 mos. post and sure hope it gets better.  

Jim,  I think you have been telling those to wait for along time, when little damage. You have been encouraging and helping those who were on tx. Perhaps as a relapser I may be "biased" but I agree that we have a right to our opinions and to give our opinions.  

Linda

[drofi]

notice same thread at the community forum please.

[DoubleDose]

Jim I have to agree.  I have treated twice, and am SVR, and happy that I am where I am, etc.  But if I had a loved one who found out they had HCV, and the liver damage was minimal, and they had few problems symptom-wise from the virus, I would most definitely recommend that they wait a couple of years, while monitoring liver health closely, and see how the Vertex, Inf. Riba cocktail pans out.  If they could get away with 12 weeks of combo cocktail tx as opposed to 48, 52, or 72 weeks of interferon driven tx, I think they would have an immensely better post-tx recovery prognosis, spend much less time in misery, and feel a lot better physically and psychologically at the end of tx to boot!

We are too close to a possible quantum leap in tx efficacy to jump into this potentially very damaging SOC currently in use, unless it is really medically urgent, or personally deemed necessary.

We are indeed all allowed our opinions, because that is all we have to offer, at the end of the day.
Our experiences, and our well earned opinions.  If someone reads fifty forum histories, and opinions, they all provide insights into making a well informed, information filled decision.

Look at how many come to the forum after getting into poorly planned tx'es, having unskilled doctors, or just having no idea what they were dealing with.  Our feedback allows many people to understand the bigger picture, find the right treatment options, and make more enlightened decisions.

Keep all the opinions coming, everyone!

DoubleDose

[jmjm530]

Drofi: To tell somebody to wait for better stuff is easy, especially if you have done Tx and have SVR
-----------------------
What's your point. I'd really like to know.

I've done treatment, I'm SVR, and I've told others that if I had little or no liver damage, I'd wait for better stuff.

And in fact, I took my own advice. I waited three years after I was told my biopsy showed me at stage 3.5. And that was before Teleprevir was even in trials. And I waited that long because I didn't want to inject interferon into my body for a long period of time unless absolutely necessary.

I'm certainly not advocating people to wait that long. That was my personal choice. But I'd still like to know your point. And no one here has ever said that Teleprevir therapy won't cause long-term problems. What some, including myself, have said, is that hopefully Teleprevir therapy (in its current form) will have double the SVR rate with half the exposure time to interferon. And that future therapies -- possibly 5-10 years off -- may not even include interferon.

You know, I'm getting sick of people telling me what opinion I should or shouldn't post here. I treated for 54 weeks, got sicker than sh*t, and have a right to post my experience and opinions, just like you do. I may not agree with your opinions, but I don't do an ad homominem job on them.

That's right, I treated for 54 weeks, I'm SVR, and I suggest that many wait for better treatments. Who better to suggest that than someone who has been there and done that. So what's your point?

-- Jim

[drofi]

Sorry to be honest, but this survey has one big mistake: It did not differentiate the answers between thos who got SVR and the relapsers and nonresponders. In addition there was no differentiation between fibrosis or zirrhosis grading and feeling well.
There is a publication from 2006 about a similar, but much better German survey with more (714) patients : http://tinyurl.com/2c6ksq

Only 5.1% would not do an tx again. Quality of life was better after Tx, but depending on the ponts mentioned above.

Another point to notice is the bias: People who feel well after therapy and have SVR, often do not want to continue thinking and talking about hep, they are just happy to be back to life. The disappear from the scene and do not give input to surveys. If you still have big problems, you are more interested in things. That is a bias in hep forums like this too!

And there are two other points to have in mind:
Many people who had hep C feel better now. Why? Because they are dead! Don’t forget that we don’t do Tx just for fun.
To tell somebody to wait for better stuff is easy, especially if you have done Tx and have SVR, but who is able to promiss, that the new stuff will enter the market without causing new longterm problems and that something will enter the market at all? Don’t forget that all the presentation given from companies are not much more than marketing noise, Vertex is not the FDA!

Take care!
drofi

[GrandmaA]

The place where they gave me the pneumonia shot hurts so much I can't sleep on that side.

My eyes hurt as the day goes on. this has been going on for months. But I think I am sleeping better. Although I still have wild dreams when I nap after waking up too early.

I'm waiting to receive my gatorboard I sent for to do my watercolors on. It should be here next week. It looks like I might want to take a sketching class. After you are 60 you can go to the university for free.

Just 2 days since I had any riba and my skin doesn't seem as dry. But I still have to put lotion on. I don't feel like a prune anymore - YEAH!

[GrandmaA]

Since my tx just ended, all your comments are very interesting to me. It's just been 2 days since I had my last riba. My jaw is loosening up (it has been clenched for months- I hate it, but at least I don't grind my teeth) and my brain is clearing  very slowly. My bowels are moving normally as before tx. Looking forward to detoxing. I start infared sauna on Mon. and Wed. for 30 min. each. I'm going to have 15 saunas. Sleep is still problematic. I need to get some wheatgrass. You drink it on an empty stomach. I had acupuncture yesterday and a B12 shot. And a pneumonia shot (you get one in your life after you are 65). I will get the flu shot next month. After a week I will have an hour massage.

One thing I noticed on tx is I tended to obess about other people's problems. It was awful and I even lost one so called "friend".

It's difficult to concentrate, so until that improves I won't be doing any watercolor painting. But I got all the supplies and the table, etc.

[frijole]

One thing I think about is how much I aged in the year on treatment. I went into it as a middle aged person who felt pretty young.  I came out of it as a young old person.  Does that make any sense?  That year on treatment was more than a year in physiological growth.  I am yet to adjust to my new old age.  I too feel a little disoriented and out of sorts.  In a way, I developed such a deep connection with others treating thru this board, that when I was done there was a severing of a long-term relationship.  Treatment was the normal.  Not treating is not, and I am still trying to find myself.

RTS, I am sorry you are having such a rush of emotions and physical problems.  Just remember, you are well thought of on this board.  I think we shall correct in time, but it is a long time in correcting.  I am having a heck of an awful 9/15 and 10/15 deadline crisis.  How about you?  The work this time of year sux.
fellow bean counter, frijole

[DoubleDose]

I couldn't agree more with your comments.  Something is really out of whack, and it does not feel at all 'right' or good.  I am often without drive, sexual feelings, excitement, physical feelings in different ways, and can go into a real psychic tailspin very rapidly.  Often I get a 'buzzy' almost electrical feeling in my limbs and skeleton, or head....and it feels very creepy!  Not normal at all.  I also now have a new set of medical, metabolic problems, all evident on blood testing.  I did not have ANY of these abnormalities before or even during tx!  The high blood pressure is one of the more troubling issues, as well as pre-diabetes test results, and an array of autoimmune symptoms, and test markers.

You are right, we traded one set for another.  I am glad that our livers are safer, and our outlook is rosier as far as lifespan (we hope), but all these other problems are hard to swallow.  

DoubleDose

[returntosender]

It has taken me a while - 14 or 15 months post tx to realize that I have simply traded one set of symptoms for an entirely new set.  The disconcerting aspect of this is that at least with the old set I kind knew why things were happening to me.   My current condition is such a moving target and so subtle that it takes a while to realize how absolutely unbalanced you are.  I just cant get things right and the things I cant get right seem way more important than the things I put up with prior to tx.  I feel just emotionally drained and without hope even though I have far more reason for hope than ever. Things feel plastic and phony and staged.   I cant get a good night's sleep.  I cant get a good lather up over sex.  I feel like I am going through the motions and passing time.  My head spins.  My heart races.  My stomach turns.  The core elements of life are out of kilter.   I keep adjusting here and there, adding drugs or taking away drugs, losing weight, adding activity but my feeling is that this treatment stole some very important aspect of my core being.  It all sounds dramatic I am sure but I am kinda worried about this and can see that the longer you are off treatment does not seem to make a difference except that you become quite acutely aware of how unright you feel.  Of course thats just my opinion which is subject to change and I dont want to seem ungrateful for SVR and dont want to discourage anyone but dang it just doesnt seem to end.  Cheers.  

[debnevada]

I wonder if part of it is expectation post treatment too. I know I don't have any business prolly to talk yet because of where I am at in treating. but the acute thing plays in to begin with for me.

I didn't have problems at all health wise prior to the surgery and infection.  

What I expect is to feel worse for a time post treatment; I hope all the tx effects resolve but one of the reasons i want to treat as little as is efficacious is because i want to minimize the "permanent damage".  

Is that a reasonable approach to what happens "after"?

[jmjm530]

Good to hear from you and even better that you're feeling better post-tx. Again, I just think people should have a heads-up so they don't have unrealistic expectations. And like you said, when we treated, the newer drugs didn't even have names.

Be well,

-- Jim

[sunspot]

I started tx because of the extra-hepatatic symptoms. My QOL was going down the drain. I had very little liver damage. The new drugs were not around the corner at that time. I think we started tx at about the same time.
As I am in the group that feels better post-tx, I can say I’m glad I treated. I don’t mean to sound haughty on that. If the reverse was true, I might have been b!tching along side with Abba.
BTW, it took about a year before I felt like pre-tx sans the pain I was in.