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

[Gee-ma]

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

[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

[DoubleDose]

I can't respond to that.

Are you a lawyer?

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]

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

[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]

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

[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

[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

[bobbyullc]

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

[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.

[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]

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?

[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

[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.

[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.

[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.

[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.

[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....

[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

[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

[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.

[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.

[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...

[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.