Diabetes,Htn.,hypothyroid,joint pain,short term memory loss?

[Gee-ma]

Are these after effects common? Why was I not warned by my physician!!??

[timedog]

are you being treated right now?

[NYgirl]

Nothing is really "common" and it all depends on the individual's body but you should be warned that there can be side effects before starting treatment.

Unfortunately, most of our doctors don't tell us these things and it's only when we have a big problem that we go to them and they then do.

That is why I truly believe it is each persons responsibility to learn as much as they can about THEIR disease.  That way they can catch things as they happen.

Since the side effects don't happen to everyone and it's impossible to figure out what will - they don't really tell us what could I guess because they dont want us to freak out.

[Kalio1]

Are you on treatment? There is a list of complications in the insert that comes with the drugs that's about a mile long. These issues are listed there. In a small percentage of people these issues develop. The doctors can't know if you will be affected by them ahead of time, we all are provided with the drug information and warnings with our drugs.

[Gee-ma]

I was treated for 48 wks., 2003. I agree we should be informed but that should also be the Drs.' responsibility-esp. w/ a newer tx. and in a teaching environment. I believe I was used as a guinea pig w/out my knowledge or informed consent.

[Gee-ma]

I am a former rn who spent much time on pt. teaching and in the quality improvement dept. I don't believe these aftereffects are as rare as you imply and I don't need chiding by you,please. When a person is ill, they are not in the best position to research and I live in a rural area and was not computer savvy at that time.I trusted my Dr. who promised "a full recovery", period. I went on forum merely to ask if others are having my same problems. I do think informed consent is imperative.

[cuteus]

the fact seems to be that those same conditions can be attributed to hep c, and tx.  I read the inserts many times, because my dr could not tell me what I might encounter in detail, the list is quite long.  It seems that according to the trials used in the inserts, up to a third or 40% might have experienced some of the symptoms.  If you then theorize that some of them will probably remain post tx, it should not be above the number who experienced it while on tx.  check the extrahepatic manifestations of hep c, and you can see where the things you mentioned are related to it. maybe we felt them in a mild form or maybe not at all. tx does enhance the pre existing pains, and can trigger conditions in those predisposed to them.  
thankfully, I did not get thyroid issues, but expected them, and BP did go up, but now is back to normal.  THe joint pains were there before tx, got aggravated while on tx further, and are still with me post tx and post svr.   are you svr?  if you still have the virus, its presence can be contributing to the problem.

[NYgirl]

I don't believe Kalio was chiding you in any way.

Doctors just simply do not tell you every single side effect that could possibly develop when you take a medication.

Have you ever seen what a simple ANTIBIOTIC can do? My mother took sulfa and lost ALL of her skin and mucous membranes and spent six months in the burn center of the areas biggest hospital.

They didn't tell her THAT could happen - but yup there it was as one of the possible side effects.

It is pretty much our responsiblity to read the inserts that come with the medications from the pharmacy or drug company. I know that ALL of the meds I have taken in the past few years they always say do you have any questions for the pharmacist? and they include an insert into the bag with instructions and side effects.

It would be kind of stupid for a doctor to say anything that might EVER happen because honestly we'd never take anything ever again.

I don't think you were used as a guinea pig...they pretty much do know all of the sides that might happen with these regular meds - and if you sign up for a TRIAL (ie: Vertex) you realize that is WHY you are in the trial.

Remember - those side effects most of them can be caused by just simple old old age...something we just all have to deal with.

[motheroffour]

Also many of the issues described by the poster occur in some people when they hit a certain age.  Thyroid, Diabetes, Fybromiallgia, memory loss etc. etc. occur in the middle ages. The age when many of the Hep C folks are also treating.  Did one cause the other, would you have had one without the other?  There is no real way to know with any certainty.

[Kalio1]

Im' sorry you aren't feeling well. You didnt give any info about your tx, you just said "why wasn't I warned by my physician" and I said you were warned. That isn't "chiding" you. A doctor can't verbally go over every possible problem that can arise on any medication, we have to read the inserts. The evidence that is available shows that MOST people do not have these issues after treatment but some do. Doctors can be blamed for a lot of things but it is our responsibility to read the info given to us and ask questions rather than their duty to list all possible side effects. All the things you describe can also be caused by Hep C, are you SVR?

[Gee-ma]

I don't know what svr means- assume you're asking if I cleared the virus and yes, I did. I reread an insert just now and there is no mention of lingering aftereffects of med. tx., merely s/e of meds.concommitent w/ usage. All I know is I was on 2 meds. prior to tx. and on 10 afterwards, as more new dx.s occurred.I think that's alot to be coincidental but whatever....
So, anyway- anyone out there having similar problems????

[cuteus]

you are correct, it does not specify that they will linger, maybe because the trials did not involve a follow up of those who experienced the effects while on tx.
There are a few members here who feel the tx aggravated some of their conditions, and created new ones. they might see your post later on.  On a curious note, FLguy here, was dx with diabetes prior to tx (or high blood sugar, can't remember) got stabilized while on tx and is back to pre tx condition, but no SVR.  SO, in some, hep c can trigger the same things you mentioned.  DO you remember feeling anything before tx or dx with any of these things prior to tx?  what kind of tests did they do on you before tx?  
check the thread later, you might get those who feel the tx gave them long term conditions. there are some.

[Gee-ma]

Other than Hep C.(which was detected when I gave blood)I have never had any health probs.other than depression,which was controlled w/ meds., prior to tx. I have/had a very healthy lifestyle.I'm not sure the trade-off is worth it.

[SoCal Lady]

All of the symptoms you describe can be attributed to the aging process, and/or to the American diet and lifestyle.  I'm sorry you're experiencing so many problems.  I hope you are able to resolve them.

[NYgirl]

The interferon actually GREATLY IMPROVED my immune system...I have not been sick since treatment (in the conventional way).

Unfortunately, realizing we are taking serious hard strong meds (chemotherapy) I guess they assume since the word "CHEMO" is so well known to people that we would do some research on our own or ask questions.

If you did get these problems because of treatment be GLAD you are SVR for God's sake that is GREAT!  Lately people like me have to do 72 weeks just to TRY and get that!

I have most of the problems you mentionned (thyroid etc) and don't even HAVE SVR (yes...cleared the virus for good).....so when you get mad try to remember that the treatment may have SAVED YOUR LIFE!

You don't mention how much liver damage you had but...aren't you glad to nkwo if you were a guinea pig that it paid off?

and remember - if you need to take other meds in the future...do some research before you take them.  It IS our responsibility to know what is going on with OUR bodies.

[cuteus]

"they should be stuck in a room full of folks who have done IFN for a year or so and share experiences. But I don't think it would have changed my mind." that is true for me also.
  you are one wise grandma.  weird about the thrush sensitivity. It never ceases to amaze me why some of us get things that others don't and expect.  so true about impossible to say who will or won't!

[sunspot]

Before I was allowed to start tx, the NP read <i>every</i> side possible. It took a good deal of time and no mention of lingering after effects of tx. He was a cookie cutter GI and I should of looked for a Hep Dr but I didn't know there was such a thing until I learned about them here at MedHelp.

[willows]

Tx gave me sicca syndrome, dry eyes and mouth and it is permanent.  I stopped tx about three years ago, but still catch more colds with fevers than the usual person, or so my doc says.  Treatment left me unusually sensitive to yeast infections, so I have a prescription for yogurt everyday.  At one time the infection was so bad in my nose and throat (thrush), it left scar tissue on my vocal cords and now I have a low, gravelly voice, kind of sexy for a gramma, but still a pain. I am fatigued so easily since stopping treatment, but still walk every day to keep the ticker healthy.

Interferon hyperstimulates a person's immune system so I can understand how it is impossible for a doctor to even GUESS at what lingering side effects any one person might have.  But we don't have to guess at the progression of Hep C.  For me, I would do it again, maybe it would work this time because I love my liver, want to keep the original equipment!  I forgave my doc for not knowing all that might happen to me permanently from treatment, perhaps before anyone started IFN treatment, they should be stuck in a room full of folks who have done IFN for a year or so and share experiences.  But I don't think it would have changed my mind.

Hope you start feeling good soon.  If I understand your post, you are still undetectable....you were given a gift some of us would walk thru hell to have.  Appreciate.

Willow

[Algernon]

Sorry you're still having trouble.

I was as healthy as a horse before TX--on no meds at all.  Worked out a lot.  Liver enzymes usually in normal range (when elevated, only slightly).  Stage 2.

17 weeks post:  Hyperthyroid, can't sleep without elephant tranqulizers, my cholesterol is high for the first time in my life...  So far, the virus isn't back and that keeps me going.  If I had made the decision to TX now, knowing what the whole process looked like, I don't know what I'd choose.  My doc told me that side effects go away for "most" people.  

I do not think all of my problems are the result of my aging from 48 to 49 years old.

My two cents.

[bobbyullc]

i have most of those affects 4 months after tx and it IS NOT from old age...i never had them before tx...many of these are listed in very small print with the meds... the drs never took the tx so they treat the sides as minimal as it is not them...i never knew of this site or how to research sides on line and was never told of the chance of lingering sides...

[returntosender]

While we are on this subject again, check out these posts on MSNBC regarding lasting side effects of chemo in cancer patients:

http://www.msnbc.msn.com/id/15136453/
http://www.msnbc.msn.com/id/15224278/

The post tx side effects and general health problems of cancer patients include something they call "chemo brain."  Looks like they are finally looking at the effects of cancer treatment on children and others maybe 40 years after the fact -"We've never looked at the big picture for pediatric cancer survivors"

If they didnt take time to look at the "big picture" for cancer treatment survivors they certainly arent paying attention yet to hepc chemo survivors.  Scary stuff.

[DoubleDose]

You are correct in your assessment that the tx CAUSED your post tx problems.  I am three years SVR, and have similar symptoms.  They are not due to aging, as some wish to think, because all of us are of differing ages, and guess what:  these strange symptoms all seem to begin in the year that we finish interferon!  Now isn't THAT a coincidence! I Guess we all age incredibly during that year on tx!  Those that are 39, those that are 48, and those 56 and 62.  Its a strange thing how aging works...hits you RIGHT after you do interferon.

Seriously though, many of us suffer from pretty nasty post-tx effects including autoimmune flare ups, fatigue and brain fog, depression, demotivation, joint pain and muscle aches, increased cholestorol and triglycerides,higher blood pressure, sun sensitivity, rashes, bone aches, sexual dysfunction, dry eyes, enlarged glands, and so on.

I have suffered from most of the above, on and off, since about three or four weeks after ending treatment.  Boy, I never knew getting a year older caused all those problems!!!!  (Sorry for the sarcasm, but I get so tired of hearing that same old lame commentary that we are just showing signs of aging).  My Dad is close to 90, and has almost NONE of the above symptoms.  

Unfortunately, there is currently little understanding of what to do for these problems, and in my opinion, there is a concerted effort by the drug companies and medical community to 'underplay' these issues, and to not do a lot of follow up after tx ends.  You're CURED you know!  So, go on, get out of here, you will be just fine!!!  Have any of us gotten follow up phone calls from our doctors after two or three years off therapy, to see what, if any, problems we might have????

Have the drug manufacturers sent us their 'survey' questionnaire to see whether we might have some issues after taking their drugs????  Are you holding your breath waiting for them to check in on these issues????  Here's a secret:  I think they just don't care!

We will have to conduct our own surveys, and perform our own 'intelligence work' to uncover the extent and breadth of these problems in the post-tx community.  Maybe at some point we can present some of our findings to the medical professionals who are really doing objective research on HCV and treatment.

We deserve to have our issues addressed!

DoubleDose

[Algernon]

In the news this past week, yet again--concerns that the FDA (and, of course, the drug companies) does no followup on drug safety AFTER people have taken the drugs.  

In the decades ahead, I'm sure we'll see more attention to this problem.  But it won't solve our problems.

[Kalio1]

People could have these symptoms due to having hep c for decades too. It could be a combo of aging and other unknown factors such as some other underlying illness. Could be lifestyle habits, who knows. There are too many unknowns to blame tx out of hand. Some blame treatment even though after treatment they felt fine and only started having these symptoms months or even years later yet they still pin the blame on tx. It seems to be the catch all for blame of any future ailments that arise.
I think post tx studies need to be done. I also think they will show that most people do not have these chronic problems from treating. No matter WHAT drug therapy people do, some will have problems, that is the way it is. People with these issues want to blame something, anything, and tx is the easy answer, it already has a hideous reputation. It is not a solution to their problems however. It doesn't make the problems go away it just gives their frustration a target. We need studies to confirm or dispute it before it is claimed as fact. We do know for a fact that tx can damage or affect our thyroids, and we see that happen to treaters. We do know Hep C lowers your cholesterol so when you clear the virus we see people's cholesterol go up since the virus is no longer suppressing their cholesterol levels. The average age of a Hep C treating patient IS middle age which brings a whole host of wellness/health issues all by itself.
I find that many achieve SVR but then seem to take that key point for granted once they achieve it and from SVR side of the fence say that they would not have treated had they known this would happen even though they have the HUGE advantage of having had the treatment WORK for them and they are free of this virus, which was the reason they treated to begin with.

[DoubleDose]

I don't think anyone is saying that they wished thay had not treated!  Where did you get that impression?  I am thrilled that I treated and became SVR.  Nonetheless, I am now dealing with a host of post-tx, interferon induced, autoimmune issues.  You see, the reason so many treaters hang the cause for their problems on interferon treatment is that almost all of us have similar, if not identical problems that occur right after treatment!  Do you not read all the posts?  Sometimes I wonder if you take the time to note the extent of the post-tx issues, and the  extreme similarity of the problems across the symptomatic post-tx group.  Also, most of the post-tx symptomatic people seem to have not had the same problems before tx.  

Several prominent doctors that I have met with, from a leading research oriented medical institution, both indicated that they believe interferon causes years of altered function across major systems and organs.
Both doctors also stated that they had treated an increasing number of post-tx, former HCV patients (SVR's) who exhibited the same syndromes.  Even the autoimmune blood markers were similar in pattern, though they did not fit exactly with standard autoimmune diseases like Lupus, RA, etc.

What you do not seem to get is that someone can support treatment, and be happy that they did the tx and became SVR, but also can express alarm at the problems that have developed as a result of the therapy.  Cancer patients grapple with the same issues, and are very vocal about the after effects of chemo and radiation therapy.  Now, just why do you think we can't express our feelings, and speak the truth about what we have experienced?
I am insulted when someone with little knowledge of the facts disputes the veracity of experiences and observations of the very people who have had those experiences.  

The only way to discover the truth is to not fear hearing the truth!

DoubleDose

[SoCal Lady]

Unfortunately, "truth" in the medical world can only be established by research, not by the anecdotal experiences shared on a website.  I'm sure there are many people who are feeling great post-treatment (I know one personally).  If we listened to only those people, we would be convinced that treatment results in no long-term ill effects.  

Perhaps future research will reveal markers that point to the strong possibility of long-term adverse effects for certain people.  The medical use of interferon is still relatively new and the negative effects are probably only coming to light just now.

I'm really sorry you're not enjoying the kind of great health that we all hope to have once we complete treatment.  It must be such a disappointment...

[SoCal Lady]

I don't know why your posts have been on the receiving end of so much criticism on this thread.  Your contributions are always thoughtful, reasoned, polite responses which I appreciate.

[bobbyullc]

MY SYMTOMS ARE from treatment PERIOD. BEFORE I RAN 2 - 3 MILES A DAY AND DID NOT KNOW WHERE THE COUCH WAS... NOW I DO NOT WANT TO GET OFF IT????? OLD AGE??? CAME ON FAST...I LOVE THAT WORD ---DEMOTIVATION...WHAT I FEEL...I DO NOT THINK THE DRUGS COS ARE HIDING IT I THINK THE DRS IGNORE IT OR UNDERPLAY IT AS I SAID BECAUSE THEY DO NOT GO THROUGH IT THEMSELVES.

[SoCal Lady]

Who said "old age"?  I (and others) said "aging" which is something we are all doing, no matter how old we are.

I've heard that it can take months for the meds to clear the system, and you're only four months post-treatment.  I hope that more time will bring you relief from your symptoms and that you'll be able to resume running...

[jmjm530]

How long have you been off treatment? I can relate to the lack of motivation post treatment, big time. Think part of it is the body (and mind to some degree) has been trained to shut down in many of us who had a difficult tx experience. Just because tx is over doesn't mean it's going to start right up. At least I hope that's what it is and not something less reversible. Tx sucks big time.

[see me]

Sounds like cryoglobulinemia symptoms.  I have these symptoms now (except diabetes) and more and have not yet started tx. I wonder what it will be like after tx!  But, had I not had these symptoms and had them after tx, knowing what I know now, I would test for cryo. Even though the tx for HCV can be the same for cryo, one can be a SVR with HCV but the cryo does not always clear. Most physicians I know don't regularly use a PDR-they rely on the pharmacist or nurse.  Even though they are prescribing the meds, their specialty is the disease - the pharmacists specialize in drugs.  I'm not saying this is right but in the real world that is the way it is.  The pharmacuetical sales person comes in and does a little inservice with the doc about the drug - but the person is trying to sell the drug - kind of like a used car salesman - doesn't focus on the problems.  Then, to make matters worse, the pharmaceutical companies are certainly doing their long term studies on the drugs.  However, problems in their research are not revealed to the public until they have a pile of law suits against them. MONEY! But, even taking aspirin has risks - nothing is free. Info on drugs - always ask a pharmcist.

[Eisbein]

Just want you to know, when you speak, you speak for me to.

You have yet to post a post tx side effect that I didn't expirience as well. I can relate 100% to your sides, every one of them.
Most of mine came after finishing tx, some that came during tx are still with me, and NONE were there before tx.
Nothing more to add.
I have been reading your posts for a long time, long before I crossed the finish line. Never thought I would follow in your footsteps.

Sorry we aged so quickly...;)

Ina

[DoubleDose]

Just a quick additional comment:  I also used to work out at a gym on a regular basis.  My workouts were pretty intense, and I did everything from aerobics to heavy lifting.  Usually I would spend two hours in the gym, three to four days a week.  I also walked, and rode a bike on very hilly roads.  After tx, I have hardly been able to do just the walking, and that really knocks me for a loop.  I become fatigued during the walks, and have post exertion pain and fatigue.  Using weights does the same, AND makes my joints ache.  Its hard to fully recover after tx when exercise seems to put you on your back.  I will keep going at it, slowly, and maybe things will change eventually....but it has been three years !

I am not bitter at all when discussing these issues...just trying to find a way to overcome the problems.  I am not a whiner, and never have been.  I do not point fingers or blame, but I DO want the medical community to understand these issues, and find some approaches or therapies that might help mitigate the problems.  Solutions and answers are all I ask for.  Oh yes, and honesty about post-tx issues.  I do not think that some of the doctors WANT to know what is happening after tx.  They feel great that they helped people get the SVR, and 'cured' them, and being human they do not want to feel like they also may have harmed their patients.  They just need to be more aware of the post-tx possibilities, and they need to help identify ways to deal with the problems.

DoubleDose

[bobbyullc]

i have been off since june-4 months now. i let the jet skis, atvs boat and hunting guns in storage as i had no motivation...
it is frustrating when even your fellow heppers do not believe you...no wonder the drs. are sceptical.
hope you are well...missed you for a while and glad to see you are back...need that informed unemotional opinion here....

[cuteus]

"Perhaps future research will reveal markers that point to the strong possibility of long-term adverse effects for certain people. The medical use of interferon is still relatively new and the negative effects are probably only coming to light just now."  

"for certain people" is the key phrase!  the fact that not all of us end up with HTN, skin issues, malar rashes, thyroid problems, etc is proof that CERTAIN people might be predisposed to these things and the exhausting tx and powerful drugs aid in their development. Add to that the lack of tx for them while on tx, and they might become permanent in some individuals, but I don't think the majority falls within those walls, given the fact that no more than 40% experience adverse events such as depression, for example, according to the inserts.  The tx for these post tx conditions caused by tx is the same as for those who develop them due to other causes.  Why would it be different?  You have joint pains they give you NSAIDS, you have HTN they give you the correct meds for that, diabetes, same drugs as those who did not do tx for hep c.  
The benefit would be to get tx for these things if they develop while on tx, trying to keep them from becoming permanent, we hear from so many whose drs don't want to prescribe pain meds, Procrit, etc.  Who knows if early intervention could avert some of the post tx issues some suffer?
A long time back, they used to test for antithyroid antibodies prior to hep c tx, and if positive, tx was denied.  They don't do that test anymore, so we should ask for it.  ANd, even if knowing we are predisposed to something, we choose to tx, it is a chance we took knowingly.

[Kalio1]

This same group always does the same thing, they turn it into a "they don't believe my suffering" story. That isnt what is being said at ALL, no one has EVER said you didn't have these things happening. What IS being said is you do not KNOW if tx is causal to your situation. In many cases doctors have told you your symptoms are NOT related to tx but you choose to not believe them either and decide they are all lying or in denial about it. I doubt that, I think it is that their clinical experience doesn't back up such claims. As So Cal said, antecdotal evidence does not constitute science. And I will add, symptoms are NOT a good basis for a diagnosis. Symptoms are very poor indicators. You can have swollen glands and have anything from a head cold to leukemia for example. Its SCIENCE that proves a diagnosis.
Most if not all of the things described as "post tx" long term issues as they have been dubbed are also symptoms of DEPRESSION and ANXIETY as well as other physical ailments that have nothing to do with tx. How many of you with these issues have been told by your doctors that he feels they are depression/anxiety related? I bet most if not all of you have been told that.
"Demotivation" is the number one symptom of depression. Taken as a whole, these symptoms are all over the map and not some concise group of symptoms as has been suggested. Logically it sems to me long term treatment like this is likely to cause anxiety and depression and even PTSD. That makes sense to  me.

It does seem like a SMALL group have skin issues after tx, but it is already known that that is a possibility of these meds. It is KNOWN it can take 6 months to a year for things to return to normal. Particularly if you had psorasis or some other skin disorder prior to treating. It doesn't solve your issues to blame tx, it does no good. All it does is scare newly diagnosed people who read this into not treating for fear of this happening to them. You hear it said "if only I knew or if I had it to do over again I wouldn't or I lost a year of my life,etc. etc. and most if not all of them acheived SVR!
I don't deny some people are suffering, but I do not believe they have any valid basis to claim it is caused by tx other than them vehemently saying it is so.

[Gee-ma]

Thank you! Thank you! Thank you! You have said it better than I could and I so appreciate the validation! My point is not to blame but to identify probs. so that new patients can make an informed consent to tx. My Dr. admitted that he will begin getting lab prior to tx. for blood glucose, thyroid and any other markers of suspected potential tx. related disease. It's an imp.step forward.

[Gee-ma]

I have to wonder if you have medical training? You speak with such an air of authority but are, in my opinion, incorrect in many of your broad statements-esp. concerning the use of symptoms in diagnosis.Documented experiences of response to tx.(symptoms) are very imp. in research and I hope all will report any problems to their physicians. For you to discourage this or diminish the imp. is not helpful to those of us dealing now w/ chronic illnesses.My doctor does believe me. I started this thread for those who are faced w/ aftereffects in order to fing
d any patterns and report them. Since you do not fall into this category and have made your feelings known, could you please get off now? Enough is enough.

[jmjm530]

You should be commended for continuing this discussion of post tx symptons.

I just don't get it when people suggest that these types of threads needlessly "scare" people off treatment -- as if treatment is THE correct option for everyone. I can make the opposite argument that not having these kinds of thread can lull people into treatment who probably shouldn't treat (no liver damage for example) given the possible risks. The more you know, the better choice people can make.

Hope your issues start to reslove soon.

-- Jim

[Kalio1]

If you really do care about reseach being done, then add your info to this survey.
http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp



Who are you to tell anyone to get off a thread?

[Gee-ma]

And just who are you to second guess my intentions and tell me which site to go to? My subject,my thread. Get your own box.

[Kalio1]

The site I posted is one that is compiling information regarding post tx issues if you'd bothered to look. If you wont even add your info to the survey then to me that says you don't really care if this data is gathered and can lead to some answers or help or proof that it is connected to tx, you'd rather just complain about it and do nothing towards a solution.

It isnt "your subject your thread" this forum does not work that way, you don't own the thread here and you can't tell anyone here to leave unless you are the owner, and you are not. People thread jump here all the time, besides I DID comment on the subject you brought up. You just don't care to hear any opinion that doesn't jibe with your own.

[bobbyullc]

hey what site did you post..i will participate in the survey...thanks...
bobby

[Kalio1]

Here is the site I posted above with the survey collecting data on these issues
Hopefully it will result in some answers and solutions.

http://www.hepcuk.info/data/usercontentroot/home/treatments/Post%20Treatment%20Survey.asp

[DoubleDose]

I think that part of the problem is that you really don't hear what people are really saying.  You seem to reinterpret everything with your own meaning, and you respond to things that were not even said.  The fact that many of us develop a certain pattern of symptoms after ENDING tx, is just that, a fact for a sub-group of tx'ers.  You seem to rephrase whatever is said to suit your own preconceptions, rather than listening and observing objectively to what is unfolding on the forum.

You could go to several other HCV forums (as I have) and find the same post-tx symptoms and problems being discussed.  At this point I am sure that nothing will get in the way of your own desire to twist information to fit what you want to believe, but there are a number of people on this and other forums who will continue to make the facts known.  Not to scare anyone, not to discourage those contemplating treatment, but just because we happen to be experiencing these unusual symptoms and problems, and we have all noticed the similarity to other tx'ers posts.

The fact that many doctors, in a variety of other fields, especially rheumatology, are seeing these same patient problems cropping up after tx, fazes you not in the very least.  You continue to contradict everyones' experiences, you ignore comments that doctors are making to us on this subject, and you seem to just 'steamroll over' everything that has been said.
Your own personal experience does not equate to that of the larger group
discussing this problem, yet you feel comfortable contradicting anyone whose experience is different than yours.

You don't really need to understand any of this, because it is not relevant to your situation, but please when we are discussing obvious patterns, and personal experiences, don't tell us that we are incorrect.  You don't even seem to realize just how stubbornly closed minded that makes you appear.

I am not quite sure why you are so adamently in denial about OTHER PEOPLES' experiences and observations....but maybe you understand it.

DD

[DoubleDose]

Kalio,

I just have to ask you if you even bothered to read the results of the HCV post-tx survey that you linked for us???????

If you read the results of the people surveyed (mostly SVR's) you would find that 35% of them feel CONSISTENTLY WORSE after treatment than before.

Did you bother to read all the post tx side effects they listed, and the bar graphs, and the individual comments????????

Seems like you just posted a link that thoroughly contradicts and undermines your arguments, in just about every way.

The survey seemed to reinterate ALL the post-tx problems I, and many others on the Forum have discussed, but also they seemed to list even MORE problems!!!!  Seems like the post-tx group is overall plagued with a wide range of symptoms, and medical problems...even as severe as neuropathy!

I think that if you take the time to read the entire survey that you linked, you can answer all the questions that you had about post-tx problems, and how common they are.

THANKS for the info.!!!!!!!

DoubleDose

[cuteus]

to be fair though, the group was plagued with many symptoms and conditions prior to tx.  and since almost TWO thirds saw no change or felt better, it seems to match what the insert results documented. yes, some can retain the troublesome conditions after tx, and perhaps that warning should be added to the drug literature but  the survey does seem to confirm that the majority is not worse off than before tx.

[DoubleDose]

35% being WORSE off after tx is NOT a significant number in your estimation?????

Did you read the individual comments in the 35% group?  This is not minor stuff!  I think 35% is a pretty serious number, especially in light of the symptoms listed.

And the other 65%, EITHER the same or better......

Does not leave a whole lot for the BETTER!!!  If you have as many Worse off as Better off, then I think we have something of significance to discuss.  This is NOT the rare exception some people want to claim.  Unless you feel 35% is a 'rare' number!

DD

[Kalio1]

Of course I read through the site, I POSTED IT! It would be better if all doctors kept this info on all their patients but the survey is better than nothing. I hope those who think they have tx related issues contribute info. to them.
I as much as anyone am sorry anyone has to deal with these problems and want to know IF these things are related, the fact that people say it is so doesn't make it scientifically valid. Info. to validate a causal connection is needed BEFORE anyone can go around claiming it as fact. That is what bothers me. In your words "tx CAUSED these issues" when the truth is MAYBE it did, maybe it DIDN"T. Maybe it was your double dosing that did it, maybe other factors are contributing like having HCV for many decades or some other underlying undiagnosed illness. Maybe after we clear the virus we are still left with residual problems from long term positive status and it isn't the tx at all, we don't know. You need more than people with symptoms or antedoctal evidence to establish a factual, causal relationship. Why do some have a delay between tx and these problems arising? One theory is that the IFN could have been "protecting" you for a time from the fallout from having HCV for decades and only after it completely "wore off" did you begin to have the problems crop up. Who knows, my point is we don't KNOW what has caused this to happen yet, there are too many variables and not enough evidence.
That is now and always has been my point, never have I denied it is happening to people. WHY it is happening needs to be established. To say, as you do, that "tx CAUSED these issues" has to be established scientifically before that claim can be legitimately made. That is what I take issue with.

[DoubleDose]

I can't respond to that.

Are you a lawyer?

DD

[DoubleDose]

One hundred people ran a marathon one sunny bright day.  As they crossed the finish line throughout the day, twenty-five of the racers jumped up and down and celebrated, feeling euphoric.  Forty of the finishing contestants sat and just tried to recover after the race, feeling not much worse or better for the effort.  The final thirty-five runners died of heart attacks after crossing the finish line.

The question is: Why in the heck did those 35 marathon runners die????

Answers below, multiple choice format.  100 points awarded for the correct answer!

a.  The racers aged rapidly during the race, and in the final seconds after reaching the finish line, natural death from aging occurred.

b.  The 35 racers had experienced previous contests,labors, and stressors in their lives, that all culminated on this day, and caused them to expire at the end of the race, coincidentally of course.

c.  The 35 dead racers all shared a unique genetic trait that caused them to die on this particular May date of the marathon taking place.  It was genetically predetermined.

d.  The 35 racers bit the dust because the long race itself killed them.


The answer to this question will NOT be found in the HCV survey, but you might make an educated guess!!!  Not really scientific though, mind you!

DD