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Post - Tx Long Term Problems
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Post - Tx Long Term Problems

It was requested that I re-post this. Are there others with this experience out there? ALL my doctors cannot seem to give me any answers!


micro2
06/26/2006
C23  . Hello All, I have not checked in here for months and this is just the topic I am intersted in. I am 2years post tx wchronic fatugue syndrome,fibromyalgia, neuropathy, extreme depression and mental fog. I am unable to work and collecting ssdi. I am still looking for that truck that hit me!!I treated for 19 months and did not kill the virus. I spend my time trying to make sense out of the person this tx left behind. Thanks, michael
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91778_tn?1252558770
I am so sorry to hear that. I know a lot of people here have the same long term effects from TX. I am sure they will post tonight or tomorrow. You are not alone... I just wanted to respond as not leave you hanging.  Hang in there... Take care
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137025_tn?1217768341
I can totally identify with "the person left after tx", I spend a lot of time every day trying to learn this skin I'm in.  Just the impact of having a chronic illness is a HUGE impact on a person, totally changes body image, literally rewrites who we think we are.  And the more we learn about Hep C, the more we get rewritten.  

I went on anti-depressants after failing tx and am still on them, not for everyone else, but they seem to help me.  I worked hard at finding projects that make me feel worthwhile while I stay at home.  I have had some success, learned the computer, taught myself photography, but first, I had to learn to grieve losing the strong, brave girl I used to be.  I aged 10 years from tx, and struggled with all the changes, but now I am mostly okay with who I have become.  A little bit of professional help, plus the meds and a lot of education about Hep C has finally got me comfortable in the virus ridden skin I live in.  I can brag too, I had a letter to the editor published in U.S. News and World.  I had a strong response to an article they had about Hep C, made my opinion known and saw my words in print.  This way of coping is not for everyone, but to find the fighter in yourself is totally possible.  I like being a fighter, feels better than a victim.  But it's tough getting here.

All these brave words and me starting tx again in a week and I'm scared sh!tless.  But I know it will pass, I'll get bad sides, cope with them, want to die, pray I clear and go on.  I've said it here before and I'll say it again, someone once told me..."Only those that try tx and fail understand the true face of the dragon"...I believe those words.  This is partially how I was redefined from Hep C and failing tx.  Acknowledging the change, being sad and then deciding to fight and never give up has saved my ass.  Hope it helps you.
Willow
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Avatar_m_tn
Thanks a lot for your post, I really relate to what you said. I am on round two and I try to deal with it the same way as you. Some days I succeed. I agree, better a fighter than a victim. Wish I could read your letter to the editor! Pretty impressive, US News and World Report no less!
If I don't clear this time, I gave it a he!! of a run for it's money. I love a good challelnge..heh.
I'm a little more than half way through now, when do you restart?




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Avatar_m_tn
I am not going to go round and round on this anymore, as far as it has been established by the medical community post tx issues are in fact "rare" or "uncommon" and no evidence presented by you or anyone else disproves that at this point other than antecdotal experience, dotors view it as a rare occurance. A group of people's experiences on the internet does not a fact make. Doctors need facts. No data, no facts. No facts, no answers, no answers, no help for the sufferer. You think they are rampant, I think they are rare. Leave it at that.
The rarity of a situation is irrelevant to the sufferer, it doesnt lessen your suffering, it only makes you feel as if others are discounting your problems, that is not what I am saying. Judging by the number of people who check in here on a regular basis to say how great they feel,clearly many go on post tx without these issues. If we go by antecdotal evidence for negative post tx issues, we should balance that with antecdotal evidence of positive post tx experience of those who stop by to say how GOOD they feel and how grand life is post tx and there have been lots of them. What about  ALL the people that feel good that do not ever come back, their experience has to be accounted for also in the equation. If you are having problems post tx, you are more likely to come to a place like this to find answers so it skews the view.
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Avatar_m_tn
Sorry you're having post treatment problems. As you've probably know we've had several threads during the past week dealing with post treatment issues including many of the ones you mention. Many of us believe that these problems are minimized by the medical community, and ignored by the drug companies in the sense that no significant effort has been made to study the issue in depth. Those of us who have felt the wake of the treatment drugs know the reality of these side effects and how they can significantly impact quality of life. Hope things get better as time goes on.

-- Jim
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137025_tn?1217768341
I see a new doc in 5 days at a big clinic in Seattle, my guess is he will start me on Peg-Intron, but that is just a guess.  You can bet your backside I will be posting here as soon as I find out, this is the best place to spend some time.  I love this board.  I'm scared about retreating, but made the decision to go forward.  Somedays it makes me feel strong, somedays I want to pull the covers over my head.

The U.S.News and World article was actually a pretty good one, portrayed Hep C as an emerging epidemic.  My opinion was one of agreement with the article, but I wrote about the stigma I have encountered and how we are at the beginning arc of educating the public.  The magazine was thoughtful enough to call me before they published it, they used my name and wanted to be sure I was okay with it being in print.  I was amazed at how it was not even a thrill for me.  My mom was kind of thrilled, she doesn't really understand Hep C, but the article helped and then a few weeks later, she read my letter.  I really didn't tell anyone, didn't seem like a big deal.  Compared to having Hep C every day and going thru tx, it wasn't a big deal.  We are all braver than we know.

Someday, we will have ribbons and celebrities and concerts, but for now, it is kind of lonely.  Cept for here!!  Have a good weekend, K.
Willows
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Avatar_f_tn
micro, could you tell us how many of those things were present to some extent before tx, if at all? if present, how severe were they?  I find it useful to address the post tx effects in relation to what was present before tx, since most people are told that tx will aggravate existing conditions, and trigger others we are predisposed to.  Also, bear in mind that if you did tx but still carry the virus, its presence will account for some of those symptoms you are experiencing. Neuropathy and cognitive issues are present in hep c infected people as well as in some folks that underwent tx.  There might be a double whammy in the case of those who endured the meds, and still carry the virus, in terms of post tx symptoms, and they could be accounted for by tx or hep c itself.
just something to consider.
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Avatar_m_tn
The notion of pre-existing conditions or the virus itself accounting for many of the reported lingering post-tx symptons comes up often. I'm not suggesting the posters are trying to minimize what many report has happend to them post treatment but I would like to add some thoughts.

First, from reading both the recent threads and past related threads, it seems clear that while many post-tx symptons may have been pre-existing but much milder, other symptons are reported as having emerged only after treatment started.

As to those where pre-existing conditions prevailed, I'll use my own case as an example. I've had very mild psoriasis and seborreah dermatitis since my 30's. On a scale of 1-10 it impacted my QOL maybe .001%, in other words it didn't other than a visit to a derm every few years and the application of an ointment maybe on average once every three months.

During treatment these conditions flared and from everything I've read and from what my doctors tell me it's from the interferon. I ended up with severe guttate psoriasis over 60% of my body, disabling plantar pustular psoriasis on hands and feet and rosacea on face and neck. Forget QOL on treatment -- practically non-existent. Post treatment the plantar pustular psoriasis cleared up as well as the guttate. This was expected as the Interferon left my body. What does persist is the seb dermatitis and rosacea. Right now, on that same 1-10 scale, where 10 is the worst, I'm over 5 with a significant limitation of my outdoor activities not to mention aged and abused looking skin.

This is my example of how the treatment drugs flared and then persisted an already existing condition. I'm sure others have theres.

The point is  that to those that suffer, it really doesn't matter if a condition pre-existed or not. If the treatment drugs magnify a pre-existing condtion 10-20 fold then the end result is just as bad as if it were a new condition.

It's said, for example, that those that lose their thyroids during treatment might have developed the same problem 10-20 years down the road. Does it make them feel any better that they might have lost their thyroid now instead of *maybe* in another 10 years?

And how many folks really know what lurks under the surface in terms of pre-existing symptons? Don't we all have pre-existing symptons to one degree or another?

What Interferon does during treatment is to dramatically alter our immune response. It seems reasonable to conclude that the post treatment symptons many people get are an extension of that  altered immune response.

Bottom line is if the treatment drugs screw you up a lot worse after treatment then before, who cares if they activated something pre-existing or not.

Again, I'm not taking an anti-treatment stance. As a stage 3, I did decide to treat and the odds look good I will SVR. But the stance I do take is that lingering post treatment side effects do exist, they can often dramatically affect a persons QOL, and everyone deciding to treat should take this into consideration before making a decision -- especially those with little or no liver damage. From what I've personally experienced and read here, your doctor isn't going to give you the skinny, nor are the drug companies.

-- Jim
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86075_tn?1238118691
very nicely worded post, I'm just hoping that youre skin problems will be significantly better soon, I know youre thumpingly bored with them by now, but I'm confident that they will be better in, let's hope, the not too distant future...
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Avatar_m_tn
Kalio: That is soo true that to the person suffering the conditions it really doesnt matter when they started, but it does matter when trying to figure out what role tx plays in it.
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Maybe I wasn't clear enough but of course it matters when trying to figure out the role treatment plays and that was my point, at least in any practical sense to the patient.

If treatment flares or bring's out an underlying condition that persists after treatment, possibly permanently, then what is the difference from the patient's point of view? If you're making a technical argument OK, but I see no difference between the two when it comes to someone factoring in the possiblity of long term side effects into risk/reward equation for a treat or not to treat equation.

Having said that, many report persistent side effects that were NOT pre-existing. So what is your response here? The literature doesn't say this. C'mon. I think Rev put it very well in another thread:

"I've yet to "meet" a person that doesn't have problems post-treatment, directly due to the combination of peginterferon and ribavirin. Long term studies on the subject are scarce, if any exist at all. We don't need them to know these things are happening with our bodies/minds post-treatment. The validation comes from the people on these forums. Remember the words "believe the children"?"

Now how we factor all this into a treat or not to treat decision is an entirely different matter and two people can agree on the same data regarding side effects and legitimately come to different conclusions. But to say that persistent post-treatment side effects are "rare" as you have in the past, just doesn't seem to fit in with the many experiences documented here.

-- Jim
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Avatar_m_tn
I'd just like to add that no one was a bigger skeptic than myself regarding persistent post treatment issues when I first started posting. I remember getting into several tuff's with DoubleDose on the subject accusing him of negativity and undermining the motivation of those here treating. I have long ago apologized to him for that and understand that while he may have upset some people treating, he was performing a greater good by giving a more complete picture to those about to make a treatment decision.  

I'm sure some here are familiar with William S. Burrough's book, "Naked Lunch". One oft used interpretation of the title meaning is that frozen moment in time when you see exactly what is at the end of your fork.

Well, what words couldn't do, the treatment experience did. I saw and continue to see what was at the end of my treatment fork and am convinced that this treatment leaves many of us with an altered immune system with the resulting problems.

Treat -- don't treat -- treat hard and long -- treat soft or short -- that's an individual decision. But without the facts being made clear, that decision will be based on incomplete knowledge.

-- Jim
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Avatar_m_tn
To take out of context part of what I said and quote it is a bit misleading. Without proper studies we can ONLY go by antedotal evidence and we need more than that to get doctors to address the issues and to warn patients and help them post tx. To establish a medical "truth" you have to have more than antecdotal evidence as I am sure you know. My doc also agrees it does happen but so what, that doesnt help one of the people suffering! I am NOT saying patients complaints aren't real (as taking just " if it is true" insinuates out of what I said) at all, but doctors often IGNORE patients when there is only antecdotal evidence and no medical factual basis ie medical "truths" to back up their complaints. As we see from those going thru it, doctors often tell patients either their complaints are not related to tx or tell them it is in their head or caused by unknown reasons because there is nothing being done to collect data. Without studies we do not know for a fact if tx is the cause or having hep c is the cause or oxygen deprivation during tx is the cause or some other mechanism of tx is the cause or what it is caused by, even though it seems obvious it is caused by something having to do with tx, many doctors want established facts before they will address it and treat it and make that connection. This is why so many patients are under or improperly treated or ignored for these problems in my opinion.

People need a bad guy in this dogfight and I am sick of being painted as someone who doesn't believe the complaints are true in this forum. If you want to blame someone blame the doctors and researchers. Same goes for the "supplements are beneficial" argument, maybe they are, we need clinical facts to back that up, the sooner the better because if it can be established they work, it will give people options.
It needs to be studied before we know for A MEDICAL FACT that tx is the cause and I can't personally do anything about the fact nothing is being done.
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Avatar_n_tn
I appreciate your clarification.  Frankly, I haven't been here continuously and know nothing about the dogfight to which you refer--was merely reading what you wrote and excised a part that I thought fairly represented the whole of what you were saying.
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Avatar_m_tn
Sorry to hear you are coping with these issues. Do you ahve a good pain clinic or doctor's group in your area? I know they have some success with fibromayagia. My neuropathy was helped tremendously by a good pain doctor.
Hang in there, I hope you find some relief soon.
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Avatar_m_tn
Speaking of post tx issues, what is going on with your stomach problems - as I recall you stopped the proton pump drugs and went with lifestyle changes.  I developed some pretty nasty stomach problems on tx and they are continuing 5 weeks post tx.  I really dont like the proton pump drugs.  How are you doing without them?
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Avatar_m_tn
That is soo true that to the person suffering the conditions it really doesnt matter when they started, but it does matter when trying to figure out what role tx plays in it. Preexisting conditions and having had Hep C or long periods do factor into the equation. It is noted in the meds. literature that the tx can cause existing conditions to flare or increase but it is not noted that you can suffer from long term issues due to the tx. To me, that is the issue, that patients need to be warned and made aware if they can end up with long term issues if it is true they are due to tx when making their decision and evaluating the risks. With  no studies to go by, it hasn't been established by the med. community that they are related to tx so the patient can be fully and properly informed before hand.
Clearly studies need to be done so that can be established or refuted.
I think it is a problems with MANY drugs approved by the FDA. Vioxx is a good case in point. These Hep C drugs have been around quite awhile now so it seems to me these studies should have been done by now as they have large pools of patients that txed to learn from.
I hope you get some relief soon, sorry you are going thru this.
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Avatar_n_tn
AMEN to Jim's post.  

Me, I'm the neuropathy kid with constantly buzzing, throbbing, tingling feet and hands.  I'm also very prone to severe spasms in those parts, many of which like to occur in the middle of the night, casuing me to do my little St. Vitus dance routine.  A little annoying, especially for the two other creatures I share a bed with.  (Me, I'm resigned to it and hope it will abate at some indefinite point in the future.)   Anyway, let's just say I'm in a chronic pain state, but I'll take it any day over fun with dermatology.

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Avatar_n_tn
Just a quick response to your "if it is true" qualification as to the veracity of reports about post-tx conditions.  (Our posts crossed.)  You know, in the medical community, good practitioners rely to a great degree on anecdotal information, and that information is already there in abundance.  For example, the head of Neurology for Northern California Kaiser agrees with me that my neuropathy is interferon induced.  He also reports that the literature shows this happening to a hapless 1% of interferon consumers.  Does he take that low figure as gospel truth?  No, he does not.  It is his strong impression from clinical practice--not from reading the existing medical literature--that this figure should be much higher.  As he lamented to me, the reporting mechanism are just not in place.  Current documentation is piecemeal, to say the least.
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Avatar_m_tn
Thanks for asking. On a scale of 1-10, with 10 being my worst during treatment, I'm now around a 2, which I could be very comfortable with for life if it doesn't progress any.

What I had/have is something called Laryngopharyngeal Reflux (LPR). Unlike ordinary GERD (chronic reflux) heartburn isn't normally the major complaint but generally does its damage higher up and can often result in sore throat, damaged vocal chords (hoarsness) ear and sinus problems, etc. I had a mild case of LPR prior to treatment and it flared during treatment. Combined with other stomach issues and taste alternation, eating meals and the aftermath during treatment was more or less a living hell. It's interesting how much something we take for granted like eating and other bodily functions can throw us off when they stop working as advertised.

I am happy to report that in spite of some lingering symptons (hoarseness, sinus...) that I'm now enjoying all my old favorite foods to the point where the 30 pounds I lost during treatment have all come back and then some. In fact, I'm now trying to lose a few pounds which is a real switch from treatment !

Five weeks post treatment is still very close (I'm 16 weeks post)  and hopefully most of your gastro sides will resolve soon as mine did.

Regarding PPI's, etc, I weaned off double Nexium around week 4 or 5 post tx if I remember correctly. Some rebound but manageable. To help with the rebound I took antacids such as Tums and some H-2 inhibitors like Xanax. For the past month I pop a Pepsid Complete (combo H-2 inhibitor and antacid) every day or so if I eat badly and get some hearburn. The doctor also prescribed what is advertised as an instant acting PPI -- Zegerid -- which can be used on a once in a while basis as opposed to having to use every day. This past week I don't believe I've used anything, in spite of drinking coffee, a slice of pizza here and there and a few beers.

I also have this theory of competing illnesses which maybe I'll publish in Mad Magazine if it's still in business. Theory basically is that the body can't tolerate too many things going wrong at once so a dominant disease/illness will overtake a less dominant one. (The exception is during treatment when everything seems capable of going wrong at the same time)  In my case, as my skin problems became worse post treatment the Reflux became better. I don't really stand by my theory but probably will sit on it if pushed into a corner.

Hope you feel better soon and don't be afraid to experiment with different meds, including over the counter antaids, etc,, to carry you through the transition period. I think I turned the corner on the gastro issues around week 12.

-- Jim
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Avatar_m_tn
That's Zantac, not Xanax above, although maybe I should have taken both :)
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Avatar_n_tn
Just FYI, and I don't mean this in the spirit of combat, I've been around Hep issues and people since 1990, and my informal census over the years is that a majority of the people who can answer in the affirmative to "Are you EXPERIENCED?" can also state that they've encountered long reentry periods back into so called physical and mental normalcy.  I think that someday soon the whole field of immunology is goiong to rear up on its tiny infant feet and declare to the world that immune-stimulating drugs, of which interferon is one, pegylated or no, have a profoundly alterating effect on the terrain. Some effects are to the good, to be sure.  But a lot of 'overdrive' situations also develop, which is to say various aspects of autoimmunity.    So what's the point of discussing it here?  Well, we get clues of the 'oh, that's started happening with you, too?' kind, and it's damn helpful for all of us.  Knowing that my ex-dancer friend L. developed crippling neuropathy after an only 4-month long combo treatment (her platelets tanked beyond repair, anaemia was overwhelming, and they terminated) was very useful to me when I found myself in exactly the same place.  And no, I ain't no couch potato.  Usta coulda point and flex with the best of 'em.

I mean, this is what we can do here, other than argue and slag each other off.    I'd be happy to work with a few others in toothcombing through the archives to pull references to post-tx problems.  We could then try to systematize the data and attempt to get other forums to do the same. Then we could present our data to Hep C Ambassadores, a good organization with tons of doctors on their board of directors & brainstorm with this activist &  PR-experienced cohort to see how we can disseminate this material, along with a strongly worded proposal that all dispensers of Hep C treatment be obligated to collect followup data and to deposit in a central place.  HCV Advocate people might also provide guidance to us, and are another set of logical folks to hook up with.  Ya think?
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Avatar_n_tn
Prior to Tx I only had mild fatigue. Funny.. my primary doc admits that I am not the same person that I was prior to Tx. I am...truly changed. I am not necessarily a worse person (other than physical)...I am a different person..and thats who I am trying to live with. thanks, Michael
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86075_tn?1238118691
I just don't think docs are going to be giving us a lot of balanced info regarding these drugs cause drug co's don't find it in their best interests to tout all the negative features of these drugs...at present...they don't have anything else to give us so what are the docs going to say? talk about your "disincentives" (hopefully that'll change soon)....I would venture that liver docs mostly go by the experiences of patients in their particular treatment pools...

I don't think a lot of docs are even reading a lot the studies in existence....many are disinclined to out of overwork or lack of motivation....I've expereinced this on a firsthand basis often enough...I'd say a lot of patients right here are more informed of ongoing studies/research then a lot of docs you'll meet "out there." That's why it's so important that we find good docs...

Very little financing is going to these types of studies, not just with this drug, but with many drugs...

I think it comes down to differing motivations from the patients themselves....if you bx out at a stage 3 with a 200 alt and you gotta treat, what's the point of finding out all the bad crummies that might or might not get ya down the road....you gotta jump in anyway and hope for the best...it's good to know "something" about what you might or might not expect, but I'd prob stay away from the "in depth analyses" of them, in these circumstances...that's just me though...

If you bx at a 0 or 1, then it behooves you, indeed, to find out a lot about these issues, however you find it....it becomes part of the calculus that you should know about before deciding to treat...

As unscientific as this sounds, I'm used to feeling out a lot of ancecdotal info, I've *had* to when it comes to supplementation...because of the old rubric of little to no studies or reseach...

I wasn't going to just sit here and do nothing, I had to do something, so I researched and spoke to many, many people about their expereinces....professional and laymen...I figure it this way...on top of all the statistical data and research I compiled...if 30 people took the green pill, and 20 of them reported pretty good results, I thought I was maybe onto something....

Conversely, if 30 people took the red pill, and 20 of them started to projectile vomit soon after, I stayed away from the red pill...as crude and unscientific as my reseach was, it has borne fruit for me and I'm glad I went through the painstaking process of doing it...  

I just hope someday soon this will all be moot and people will have many more options then they presently have...

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Avatar_n_tn
I think that all we really need to do on the forum is to honestly relate our experiences of being on tx and life after tx.  We all have somewhat different stories to tell and outcomes unfolding.  But, I really do NOT like anyone telling me, or anyone else, that they should not tell the truth because it might 'frighten' someone, or make a 'newbie' too nervous to do treatment.  
We all try to give an honest, and objective account of our experience, and point of view.  I think THAT is plenty sufficient.  The FACT IS that many people do seem do experience problems after tx that they did NOT have before tx.  That is not so 'frightening', or surprising to most people who have read anything at all about interferon, how it works, and what it can do.  I really dislike being contradicted when it comes to relating my own personal experience, and describing what my post-tx problems involve.  It would be the same as me saying that those who do not suffer post-tx problems must be imagining things, or are not bright enough to understand that they do have problems.  But I do not think that we are trying to say that.  I do believe that many people do the tx and do not experience lasting after-effects.  I have no problem with that information.  What I do NOT want to hear is that I must be mistaken about my own personal experience, or that I should 'keep quiet' because I might be the 'boogie man'.

We all need to just 'tell it like it is' for each of us.  The good, the bad, and the ugly.  How else will we find out the real truth about HCV, tx, and everything else related.  No muzzles please!

Thanks for respecting all of our points of view.  And, by the way, we will ALL help the 'newbies' make their way through tx.
That is why many of us stay on the forum after clearing!

I fully agree with many who have posted on this thread, and just as strongly disagree with some others.  That is how 'opinion' works.

DoubleDose
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Avatar_f_tn
micro, thanks for the input.

as for the comments as to who cares if the conditions were there before, the concern is not that the qol is impaired and therefore it doesn't matter how it came to be in my case, but this is a forum read by many, and some of the information is not to address one single person, or even a few with post tx problems, it is about the person considering tx, those undergoing tx, and even those still waiting. It is about presenting a balanced picture. If I read that someone has problems post tx and that is all I read, I will believe(as many newbies have commented lately) that everyone will come out with a disabling condition post tx. Those suffering from these conditions feel the need to warn new readers about the possibility but those who are not suffering post tx conditions feel the need to inform the newbies that it does not happen to all treating, and no one knows what the percentage is. I read above 1% for neuropathy, that is different pic than 90% wanted to be presented in some boards. No one really knows. So, please if some folks want to post that they suffer no symptoms post tx and thus believe they don't exist for everyone, or if they want to alert the reader that pre existing conditions will be worse during tx, but not necessarily post tx, let us, without trying to minimize what we are trying to convey.
Some people  might be interested on what was there before tx as related to what is left, are we going to stop the flow of that information because to us the only thing that matters is that WE are not feeling that hot after tx? Ok, there is no pain like your pain, but don't stop the ones that are not having them from giving out that info to the readers.  I know no one is appointed the guardian of newbies, but that is not what some of us are doing.
Warn newbies of possible outcomes based on  your personal experience, but allow others to 'warn' that there might not be any. I am not saying the problems are in your head, I am saying they don't exist for all and I don't want to feel like I can't saY  anything for fear of stirring up someones' wrath because they still have to deal with ongoing issues. I have ongoing medical issues also, I don't blame tx for them, because I don't believe they are related.
So, allow for those that want to know the before and after to inquire so,without feeling attacked. If anyone saw that survey on post tx issues, it does ask what was present before tx and post. So some people might be interested after all.
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Avatar_m_tn
As I said before, I'm sure your intention is not to minimize post treatment side effects by labeling some of them as pre-existing. However, it's very easy for someone new reading some of these posts to assume that if they don't have any pre-existing conditions then they're pretty much in the clear, of if they do have pre-existing conditions they will be left no better or no worse than before.  Those are the main point I was trying to make and have been very open in my posts regarding what conditions I had pre-tx.
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Avatar_m_tn
I think my previous post needs one more sentence so it will be confused with the opposite of what I meant.

It should have read:

As I said before, I'm sure your intention is not to minimize post treatment side effects by labeling some of them as pre-existing. However, it's very easy for someone new reading some of these posts to assume that if they don't have any pre-existing conditions then they're pretty much in the clear, of if they do have pre-existing conditions they will be left no better or no worse than before. Both points which do not seem to be supported by many (not all) who have posted their post treatment experiences.  Those are the main point I was trying to make and have been very open in my posts regarding what conditions I had pre-tx.

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Avatar_n_tn
And I want to make sure that I'm read correctly--

1% documented for neuropathy post-tx, I wrote.  And I added that I thought, and that a real life medical specialist thought, that this figure was way too low.

Now if on some of the boards it looks like an anecdotal 90%....

then don't we have some work to do, all of us patients who hang around Hep C boards?

Any takers on the compilation project?
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Avatar_m_tn
Put me down for a light GERD appetitzer, Seb Derm Soup, Rosacea well done for my entree with a side of psoriasis and brain fog glaze for desert.
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Seriously, a good idea and I believe someone posted a registry of some sort. I may be wrong, but my feeling is that unless double-blind type studies are done, anything of this sort will be labled anecdotal.
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Avatar_n_tn
One more thing:  And so what only 1 in 3000 male geno 1's become confined to their homes with interferon-induced priapism?  I mean, who better to bring that story to than US?
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Avatar_n_tn
I am a boogerman and the devil's own advocate!!~good thots from All;i want to know about everyones 'condition' durin & afterTRX...cuteus helpesd me feel good about my present need for pain meds-i don't believe i could have managed longterm trx w/out 'helper meds"...my body is doin some strange things in this my 35 week of Peg/Riba-i greatly appreciate findin confirmation...simpatico helps..we are isolated or feel such,w/ this virus-sharing  'war' storys and comparing 'battle' scars really helps Me to deal w/ trx issues...That said,everyone's med decisions,health issues and reactions are personal-just glad that they aren't private..........My joint pain seemed to subside 1st month  of trx-Now it's back w/ a vengance..!!! but hey,i am killing virus.......
Now,Califia-i gotta good inkling what priapism is& what part of my anatomy would be affected,but please post me All the bads news,or a link if yu must..THANKS
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Avatar_n_tn
First, to Beamish and anyone else who took me at face value about the priapic problem:  It was a bad attempt at levity, a false alarm, a silly joke.  Sorry!  

Rev, you just said it all, and I  am tempted to let you speak for me.  But Cuteus has asked for clarification about why we would even bother to relay our subjective impressions about the after-effects of treatment, so here go some thoughts on that subject.

Why?  Well, to create awareness within the medical community, to alert clinicians to potential problems so that they can provide better followup.  Simply that.

Jim observed that it is the results of double-blind trials, and not random impressions or anecdotes, which create medical "facts," and that it is these medical facts which eventually dictate protocol.  I couldn't agree more.  But without an atmosphere of urgency, those trials would never exist in the first place.  Most frequently the motivating "urgency" is financial, as we all know.  But there have been instances when patient activism has called attention to problems within the patient population, and that has served as incentive to research and improved health care delivery.  Where there's smoke, there's fire.  And besides, there are already reporting systems in place that need to be better utilized.  The FDA maintains a storehouse of data on all the drugs it has approved, so isn't it our job as concerned patients to make sure that our experiences with those drugs are reported as hard data & entered into a national data base?

If I have a personal agenda, it's based on having been allowed to slip through the cracks more than a few times.  In 1990, in fact, I woke up one morning in my fifth month of interferon and nearly slipped into coma.  The next few hours were truly hair raising, as I struggled to maintain consciousness and keep myself breathing.  I had been without thyroid function for some time--that become obvious in retrospect.  But my hepatologist--a heavy hitter in the field--did not test thyroid levels and had resolutely ignored my glaring physical symptoms.   There were already a few published reports out there pointing to the connection between interferon use and the development of Hasimoto's, but interferon was still basically being used experimentally on hepatitis patient--I started tx one month after approval-- and current safeguards were not yet in place.  

My experience caused a change in protocol in that practice:  from that point on they began testing thyroid levels.  And word went out on the MD grapevine.

This time around I developed neuropathy around month 6 of tx.  A year and a half later someone bothered to test for B12, and it was found that I was completely deficient.  If only someone had bothered to run a simple test while I was on tx!   And to make matters worse, the same thing happened to two other treating patients in that particular practice.  Someone clearly was not paying attention to this data on a small scale.  And what about the larger scale?   All I am saying is how can we contribute to filling in that larger picture, if doing so can eliminate any one instance of unnecessary suffering?



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hey, don't know nothin about no priapic whatever, ha ha! Or at least I used to! Hey, always enjoy reading you, you have a kind of Jack Kerouac style as you go through treatment, well, at least to me! hope you feel better soon, be well!!!!
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Avatar_f_tn
overtime, the board changes its mood and the ones that can't relate to the present mood, will stay away and become reluctant to post their concerns. When the board did not foster post tx issues to be discussed, people felt alienated and retreated to lurking instead, then when it becomes saturated with conversations of post tx problems, those who can't relate are faced with the same feelings of alienation, and some might stay away for good, and others will lurk until the mood changes again.
from time to time, some of those who can't relate to lingering post tx issues will visit and remind the board that we all don't face ongoing conditions due to tx, that there is light at the end of tx for many if not most. I remember one woman who came back to let us know how well she was doing post tx, and how much stronger she was than the guys in her unit(she was in construction and in her 50's), her post left me in awe, and I wanted to be like her post tx! I wish I would have saved her post, but I did save this one:
"deb3
(06-Jun-04) . Hi
Its been a long time since I've been here- I finished a years treatment- peg-intron and riba- in Dec 2002, 1b and still clear!
I had every side effect listed--except the good one-weight loss! I was in my 2nd, 3rd and 4th semester of lawschool then-I know this now because I'm still there, hardly any memory of it though. The side effects were brutal, my thick waist legnth hair nearly all fell out or broke off, I cried through my classes, wept with fatigue and depression, had numerous experiences where I'd realize I had know idea where I was or how I got there--more crying then. And I don't even want to think about the excruitating headaches.
But NOW, my hair is back, thicker and shinier than ever, my skin is great, and I have strength and energy I haven't had for at least 15 yrs (I'm 52.) For so many years I had terrible joint pains, depression, unexplained fevers and fatigue and constant headaches. (I guess the docs have begun to realize that HepC DOES have symptoms or related problems before advanced liver disease sets in--the immune system is so overtaxed by dealing with the dragon)My memory is back and better than ever.
It is so worth it to have put up with the tx!!! Don't give up--fight to get procrit if you have to, go with the mood 'swings' and beg forgiveness later. Just do whatever to get through it--anti-depressants, painkillers, ritalin, sleeping pills, muscle relaxers. Don't let your dr, like mine, tell you that you just have to 'put up with the sides or quit the tx'--make them help you or find someone who will.
Stay with the forum for support
Debra "
and this one

I was a 1B, did 48 wks tx, starting VL was 596,000; VL at 12 wks was 370 and undetectable at 24 wks. Still clear at 1 year post.

My doc had explained that 1's start with a 50% chance of SVR; if a 2-log drop or more at 12 wks, then chances increased to 60%. Undetectable at 24 wks, chances increased to 70%. Still undetectable at end of tx, chances increase to 80%. And darn near 100% if clear 6-month post. My doc only does the end of tx PCR and 6-month PCR (many dr's do a 3-month post PCR) so I talked her into waiting til 1-month post rather than testing right at end of tx just to give me a better feeling that I would stay clear. I'm not sure where she got the figures from but I liked the idea of increasing my chances as my tx progressed.
Good luck to you and may you have a Happy Thanksgiving.
Lynne"

what if the collection of post tx data actually confirmed that the percentage of issues was actually low rather than more as we are implying? it could go both ways.
Most of the post tx issues are mentioned in the insert literature as possible side effects of tx, it might not say that they might linger post tx, but I think we can safely infer that  it could happen, and weigh in  that information while deciding on tx. It is not like the medical community does not think it can't possibly happen. If it can happen while on tx, it can remain after tx for some. What are we trying to find out, the percentage of actual cases? would that make a big difference? Those that want to treat will do so whether the effects  happen to 10% or 80%, even if their liver damage is mild. They will go for the meds regardless. I read the inserts many times, the list of possibles scare the heck out of me, but people like the posters above alerted me to the fact that it doesn't always happen. Bless them for also dropping by, to add another view to the tx picture.

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You guys 'said it all' on this thread.  All of the issues around what to say or not to say, and how to deal with post-tx problems, how to conduct one's self on the forum, what people need to hear about from us, etc. are all summed up wisely and honestly in your responses.  

I have to believe that this forum is a 'mini cross-section' of the general HCV and tx population out there, and that the issues we hear about on this forum represent a 'typical' slice of what the general HCV population experiences.  Since most people come to the forum BEFORE beginning tx, there is no chance of 'skewed' or biased commentaries, or of having a population consisting chiefly of those who develop tx problems....because, when coming here, nobody really knows WHAT their experience will turn out to be.

If doctors are finding a big group of people to treat, who almost NEVER develop any post-tx problems, then I would LOVE to know who the heck these people are!!!!!  Because, this board is open, democratic, and probably utilized by the same cross-section of HCV patients as those that the doctors see.  Where in the world are they finding all these wonderfully cured, problem-free, happy-go-luck tx'ers?  Because, maybe we should all have gone to those doctors!!!!  OOPS, I forgot, I did go to one of those doctors.
I sure would love to personally interview all the patients who have done the tx!  Might just get a little different perspective than that held by the doctors.  Just my guess!

Anyway, thanks for making very clear what we are trying to accomplish, and why it is the right way to go.  I truly think that the 'fear mongers' are in the OTHER camp, in that they seem to truly FEAR honest commentaries, and anything that might contradict what they probably 'wish' to be true.  The people who wish to 'censor' personal commentary often come armed with nothing more than quotes like: "a bunch of doctors say...." etc.  Very little in the way of scientific studies, hard researched numbers, etc.

I personally enjoy hearing everyones' experiences, and realizing that there are a multitude of differing patient reactions, sx, pre-tx problems, post-tx problems, and attitudes about therapy.
What we do not need to hear is people saying 'don't talk about THAT, you are in the minority....your experiences are not true.....you are making people nervous...'etc, etc.

This is a FORUM, and what it asks for is PERSONAL insights, and experiences.  

Thanks for your clarity, and strength of opinion!!!!

DoubleDose
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Avatar_f_tn
"But Cuteus has asked for clarification about why we would even bother to relay our subjective impressions about the after-effects of treatment, so here go some thoughts"

that is not what I typed or inferred. I was wondering what difference would it make whether it is a small or a large percentage suffering a particular issue, if someone wants to treat regardless, but I am glad you posted your why, because I was wondering that also, reasons why folks post these issues, because there seem to be several, from wanting sympathy to urge the medical community to rush more effective, gentler treatments.

But once we have accomplished this, the drug companies and drs are informing the world that there is long term severe effects happening to a large sect of the population(this is hypothetical) and neuropathy can be rampant(again hypothesis) what then? are we looking for them to just inform all their patients so that they can be well informed when making a tx decission, are we wanting them to warn of severe conditions and spur research on tx for these conditions, or a cure(even though things like neuropathy don't seem to have a cure regardless of the cause)? If I am a Dr and give my pt the product information, and tell them that some might experience these post tx, what else do we want them to do? What might happen is the same thing as with Vioxx, lawyers will jump at the sight of lawsuits for tx induced conditions, drug companies pay millions in settlement, pull the drug off the market because it is not worth more lawsuits and hep c infected will have a harder time at choosing tx, unless they are at ESLD. Why couldn't the manufacturer of Vioxx just add the possibility of cardiac events to their inserts and allow for consumers to decide whether they would risk it? because they did not want to create new sources of litigation in newly affected patients. Does anyone not see this happening to hep c drugs, should the manufacturer ever step up and say "our drugs are causing your myalgia or neuropathy'? Why isn't it enough that they acknowledge it in the inserts?
Does anyone really think that lawsuits will not sprout left and right, thus jeopardizing the freedom to chose hep c tx? I can see this easily happening in this country.
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Avatar_n_tn
Let's have a moment of silence, please.   Other people's litigious behavior, whether actual or potential,  is of no interest to me, nor is it my responsibility.  The last thing I want to do here is offer up my painful past history as fodder for further argument.  Support forum, anyone?
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Avatar_f_tn
by all means, let's be concerned with what afflict us personally since we are the ones that have to live with it. but no man  is an island and what might not be of interest to one, it might be to another.
make things available for all to read  and let them assess what is important to their situation, and skip readings  that lacks relevance in your status quo.
allow for those with a Mother Theresa complex to express their concern for the other  group without making them feel that they are not worthy enough to do so.
I guess we will continue expressing what we feel is important, and hope that no one will jump at us because they are taking the post personally or it is of no consequence to them how things started. but things don't get posted here by others  because we have  considered them  relevant, sometimes it is not about me only.
as mad as we can get at each others postings, things are at least, civil, for now.
be well
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Avatar_f_tn
how can anyone argue with the fact that those who feel the need to express how they believe tx affected them physically and mentally, should not feel free to do so? They should by all means. Having said that, if others feel the need to balance a series of post tx comments and post tx issues by posting references to medical data that states it is not a high percentage of people suffering those symptoms, if they can back it up with medical articles, studies and related arguments, they should feel free to do so also, without anyone  accusing them of trivializing, minimizing and dismissing their personal suffering. As stated some time ago, support comes in many forms and trying to present as many facts relating to hcv and tx, so that we can make informed decissions is one way.
  By presenting relevant data and published articles, some of us are not saying, "so what if you are suffering?, it does not happen to too many folks, so is not that important to mention it" At least in my case, when I present a point that might be in opposition to one about ongoing issues, it is to alert those who might not have read or come accross what is out there on tx conditions, and perhaps balance the feeling that this is happening to the majority on tx. We might have the right to say that we believe it is happening to 90% of people, but that does not make it correct, and a reader could go away with a distorted conclusion. You should say what ever theories and guesses come to you, but please allow for opposing facts to be presented without you feeling dismissed.
I might not say it often, but I feel bad for those who are facing qol issues that might have derived from their desire to rid themselves of this infectious agent. How severe the impact is on qol, might be as individual as the perception of pain.
As much as I can, I will, (not contradict that anyone's belief that their post tx symptoms were caused by it because if that is what the person feels is true, I can't prove otherwise), but present articles and publications that might shed some light as to whether the belief that it happens in a large majority is possible and whether all the conditions attributed to tx are indeed only due to tx.
A balance bt information gathered from our drs and internet reputable sites appeals to me the most.
I don't agree that the medical community is not recognizing the effects of tx. By acknowledging them in the product information, and most of what is mentioned here has been listed, they might be alerting the consumer to the possibility that those conditions might not clear completely after tx.
During my search for specific conditions triggered by interferon(and you can search any condition's name + inf and get articles on long term outcome) I found the following one on thyroid problems. I admit I have been getting the feeling that blown thyroids are very common based on what I read here, but this is the kind of thing we have been debating recently, reality is a different matter. We might 'feel' that is happening everwhere, but reality says maybe not:
http://jcem.endojournals.org/cgi/content/full/89/8/3656
from the above:
"In addition to constitutional and treatment-related factors, the risk of developing thyroid dysfunction during IFN therapy is closely correlated with PREEXISTING thyroid antibodies. A metaanalysis of the literature by Koh et al. showed that about 50% of patients with positive thyroperoxidase antibodies (TPOAbs) before IFN treatment developed thyroid dysfunction in comparison with 5.4% in antibody-negative patients (37). The relative risk to develop thyroid dysfunction, mainly hypothyroidism, is 2- to 14-fold higher in patients with preexisting positive TPOAbs, compared with patients with negative antibodies (25, 64, 65)."
How many of us get antithyroid antibodies testing prior to tx? would it make a difference if we were positive for them? would we still tx?
I encourage people to get as many baseline tests as possible, in addition to read about side effects on boards, and do their own research on side effects and its prevalence.
here is another site found, it lists conditions and the percentage present on tx, I find it hard to believe that if 30% suffer a particular condition while on tx, that post tx 90% will suffer from it. I would have to assume that the same percentage or less would be left with the condition post tx.
http://www.hepatitis.va.gov/vahep?page=tp06-cs-01#t-1

If you look, you can find enough information to make a good guess as to how many suffer from particular situation post tx. Of course, new conditions might be harder to research and compare.
Let's feel free to speak about our post tx issues, whether present or absent, but allow for medical literature to contradict some of the speculation we are engaging in. We can accept it or dismiss it, after reading.


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I'm reading your words here and thought WOW! how does this person know exactly how I feel! I have been in treatment for 9 mts now,  I have 15 weeks left. I started reading all the messages of how other people are going through and  feel exactly what I go through. It is a very harsh tx. At first  maybe I just being a week person. loss of concentration,anxity, fituge, nausea, stiff neck, constant ache, loss of interest at times, shortness breath, ringing in ear, taking tome off of workbutto finish tx.On the good side, I pull myself through each day, stay positive, keep busy with projects etc. On good days I take advantage of it and Bad Days just rest. Getting toucher the futher I get into tx.  My tx is sponsorecd thru reasearch study the 1st 12 weeks I was on a study drug and standard care Interferon, ribavirin now just pegs and ribaviron,  and Procrit to keep my hemoglobin up. It is taken a toll on my body, Just wanted to see if there was a website to talk about this tx. and the side effects Thanks for listening.
Victoria
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1130586_tn?1316269892
Welcome to MH !

I'd like to point out this thread is from 2006 ...

Maybe you would like to start a new thread or join one that is focused on the trial you are in ?

Cheers
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