Aa
Aa
A
A
A
Close
Avatar universal

I can't believe what i'm reading

I can't believe what I'm reading here.  I too have taken the interferon and ribivarin treatment for 6 months.  I actually thought all my side affects were from old age. I was 57 when I started treatment and had contracted Hep C at the age of 23.  I felt relatively good, I had fatigue, but chalked it up to old age, though I had been a runner for 23 years and when I couldn't run due to injuries, I biked, and now walk. I had Restless Leg Syndrome/aching legs, before treatment.  I also now have more aches and pains, I have had an ex-ray of my hips which showed nothing was wrong.  I have had a lot of gastrointestinal problems which may or may not be exasperated by all the Advil I need to take just to be able to fall sleep and yes even at my age I get treated like I'm just looking for drugs.  I don't even ask for any (I know what the outcome will be "No") and they still look at me with accusing eyes. I now have pre-osteoporosis (though I've exercised my whole life).  I have worse ADD, the memory loss.  Even though I am aging I've always kept my mind as active as my body.  The treatment also cost me a fortune out-of-pocket, and I have blue cross/blue shield ($3,500).

I have a friend who took interferon and ribivarin for a year.  She has had far worse side affects than I have.  She contracted a rare form of pneumonia, had tooth abscesses, a pancreatic cancer scare and the whole slew of symptoms that myself and most of the other posters have experienced.  Her Hep C came back!  My viral load was undetectable at my 6 month check up, my Dr. seems to be resistant to testing my again.  I asked for another test and she just acted like she didn't hear me.  Maybe, the worst part of this whole thing is that my doctor told me I would feel 20 years younger after treatment.  I need a new doctor!

Personally, I think something has to be done to warn people about this treatment.  People should not be used as guinea pigs, guinea pigs that a profit can be made from!!!  What is this world coming to?!
27 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Thanks for the laugh!  I needed that.
Helpful - 0
419309 tn?1326503291
"How can you say that I only think of myself, you don't even know me."
-----------
"I happen to be the most giving, compassionate and considerate person I know."
-----------
Seems to me the question was asked and answered.
  
Helpful - 0
Avatar universal
Message boards are a wonderful thing for people who share a common issue, but it's prudent to recognize their shortcomings.  When we speak face-to-face with an individual, what we say, and how we say it is supported by our body language (our posture, stance, eye contact, even our local environment) as we engage in the dialogue.  It's a lot easier to read the other party.  It should be understood by everyone in a chat room that the experience is virtual and limited by its context.  I think it is appropriate to choose words carefully and always give the other participants the benefit of the doubt.  Reading the current posts does reveal an undertone of, if not hostility, then defensiveness.

This is not a forum in which anyone should get too personal!  I have sampled message boards before, usually related to current events, but have never participated.  Why?  I've been a trucker for longer than I care to reveal; I learned years ago to turn off the CB, specifically Channel 19, because I realized that "those who have the most to say have the least to say"; there was no point in even trying to have a rational conversation!

I certainly hope, for the benefit of everyone here, that discussions are not defined by the lowest common denominator.

PS -- Diane, thank you for your insight.  The ratio you gave was very helpful.  This is the kind of feedback I'm looking for.
Helpful - 0
Avatar universal
You may consider, or at some point considering whether to file for disability.

Yes, some doctors don't adequately explain the risks.  I've heard that one before, but frankly, I'm not sure that some doctors are even aware of them.  I've often read of doctors being surprised, in denial and completely stymied that a patient could feel worse long after TX and SVR.  I don't think I've ever read much that explains it, but you can see similar patterns in groups of people who have treated for cancer.  I don't think that modern medicine wants to acknowledge it.  You can see similar patterns in the way that Vets have been treated or classified as malingerers.  I believe that is one useful purpose for bulletin boards, so that some of this information is out there and available to patients that may not be from your doctor.

I am not aware of whether you needed to treat; what was your staging?  Many people with minimal liver damage may safely opt to wait to treat if they monitor they labs.  For instance, many doctors are encouraging their patients to wait until more potent and shorter treatments arrive; probably next year in 2011.

There are a number of people who have symptoms that linger on Post TX and may seem to be longer term and possibly permanent.

http://www.medhelp.org/posts/Hepatitis-Social/Long-term-side-effects-of-interferon/show/866107

One never knows; current TX has helped many people, far more than the reported injuries.  Even so, there remain many for which it had an unforeseen and unhappy consequence.  Unfortunately, it is difficult to predetermine those at risk for the longer term problems.  For the moment it is the only "cure" and they are working on improving the safety of the treatment.

I'm sorry for your outcome.  Yes, after 2 and a half years post TX, you have a right to feel like you are not whining.  Some people have post TX thyroid issues, some others may find that various diet and exercise changes may also help.

best,
Willy
Helpful - 0
179856 tn?1333547362
Hector is one of the nicest, most compassionate people on this forum.  Hector has a situation 100x worse than yours, yet never whines nor complains about it. Hector took the time to kindly and sincerely write to you and was absolutely correct in every word he said.

You asked a question and received an answer. If you just want to whine about how miserable you are then put in the original post "I do not want real responses but only to whine about how unfair life is to me".  Seriously how could you possibly say something like this to such a marvelous human being who was sincerely trying to help you?

Perhaps you need to discuss antidepressents with your doctor. There is no shame in such a thing many of us took them on treatment and remainned on them afterwards as the interferon was leaving our bodies. That is a good idea for you. A truthful and honest answer.

Hectors well wishes were anything but false. Perhaps if you knew what he was going through you would take back every single word that you said and kiss the ground you walk on for having it so easy.

Helpful - 0
Avatar universal
How can you say that I only think of myself, you don't even know me.  Are you a doctor or something?  I had a choice to take treatment, you are right.  My choice, however, was made by listening to doctors who told me it would make me feel 20 years younger and I was never told about the long term side effects.  I even contacted my old retired doctor to get his opinion and he agreed with the other doctors (later I found out that he had no real knowledge of the treatment, but said I should go ahead with it).  You will not find in the documentation you receive from your doctor (or meds) any mention of side effects past 6 months post treatment.

I happen to be the most giving, compassionate and considerate person I know.  I said nothing in my post to criticize you or any of the others who posted here. Which makes me wonder why such hostility. Do you believe that the FDA has our best interests in mind.  You are living an illusion if you do (i.e. Phen Phen).  If you watch trends at FDA you will find that they are only about the ever loving $.  

I am sorry if you are sick, my heart goes out to you and I will pray for you!

Just wish you had shown me the same compassion!  (It's not compassion if first you tear me a new one and then later apologize for it with false well wishing).  
Helpful - 0
Avatar universal
"Wow, such hostility!!!  It makes me never want to post another comment here"

If I had a dollar for everytime I've heard that said.  
Helpful - 0
179856 tn?1333547362
Wow, such hostility!!!

Can you please point out ONE place where anyone was hostile? I thought everyone was being quite wonderful and answering you from the heart. You have only been done with treatment a very short time. If you want to stay ill then continue to concentrate on it and probably you will.  If you want to feel well then take the advice which was given from the heart and go out and live and enjoy things - chances are when you are happy mentally you will be more happy physically.


I don't see how any of this advice (which I just tried to compile into a short one paragraph recap) is hostile at all but there you go.
Helpful - 0
Avatar universal
Wow, such hostility!!!  It makes me never want to post another comment here.  My comments are directed to everyone who responded to my post.  

Looking back at my initial post, I can see that I didn't fully explain my case.  What "I can't believe" is that so many others were experiencing the same symptoms that I was, however, none of my Drs. ever said any of it was from my treatment, which by the way ended 2 1/2 years ago.  Not to mention no one ever told me it took 2 years to supposedly be over the symptoms.  Which I now know is incorrect because I'm still having symptoms.  

My case of hepatitis was not bad, I was basically over it in a month (or so I thought).  I was not feeling that bad obviously, or I wouldn't have been a runner.  I have absolutely no liver damage, but I feel no better since treatment, in fact  worse.  I have had two instances of skin cancer in 6 months, and who knows if that is over with yet.  I know some of these symptoms may not be attributable to my treatment, but it seems that someone like me who was hardly ever sick, would now have this influx of ailments all at one time.  After reading comments from others I feel now that my symptoms are from my treatment.  I think it is wonderful if treatment has helped those who were really sick from their hepatitis, but I was only for about a month. My friend who also underwent treatment is also 2 1/2 years post treatment, and is still quite ill.  Thanks to all who wished me well.  I hope that all of you who have had hepatitis recover fully and live a long and healthy life. My best to all of you (even the hostile ones)!
Helpful - 0
1225178 tn?1318980604
YEP!!!! I'll get that math right from now on... or not put it in my post if my brain is all fogged up.
Helpful - 0
Avatar universal
Yes, thank goodness it is very few people in the grand scheme of things. When you are feeling super crappy, it is sometimes hard to remember the odds are with you.

Do your best to keep that in mind Itzova and congrats on your SVR. Keep us posted.
Helpful - 0
179856 tn?1333547362
See you gotta count on Diane with the math (and she says she has brain fog yeah right...sure.... ;)

Helpful - 0
1225178 tn?1318980604
Look at the dates on those threads. It seems that most people who are having a really bad time pull up an old thread and then post at the end of it, so one thread can range from 2002 to 2010... and have 20 people on it. That's 20 in 8 years... that's 2 1/2 people a year. Every time I read those scary threads I remind myself of all the MANY posts from people who reach SVR. Those threads are never pulled back up by new people because they aren't searching for good things... just the bad things that we might experience.

Diane
Helpful - 0
Avatar universal
Please don't misunderstand!  I'm not complaining.  I'm glad to have had the opportunity for treatment.  You're right, recovery takes time and at this point, my viral load is undetectable, my enzymes are back in the normal ranges, and there are no markers for liver cancer.  Am i happy about that?  Absolutely!  Do I wonder about long-term side effects?  Yes.  That's why I joined this forum -- to compare notes.  No crystal balls.  But I have read posts dating back to 2006.  There does seem to be a trend.  Will I be part of it eventually?  I don't know.
I hope not.
Thanks for your feedback.
Helpful - 0
408795 tn?1324935675
It's a shame that the meds didn't work that well for you, I think we have all read or know ppl who have tx stories from hell and other's who have very positive stories to tell.  Tx is like the future, you really can't tell what you're gonna end up with until it's over and even then it may take a little longer to feel better.  I used to be on this forum everyday for a long, long time and I have a lot of good friends on these pages and I assure you.  All of them are here to help other heppers who are searching for answers.  That's what they've done for me and that's what they continue to do for other ppl who have HepC questions and other questions too.  That's what they do!  Good luck with your health and I hope things work out and you feel better soon.
Helpful - 0
691935 tn?1421027090
I too have treated with interferon and ribivarin and thought I would surely die before 48 weeks rolled around.  I also wanted to feel perfect after treatment and have gastrointestinal problems and joint problems.  I also had restless legs syndrom pre tx, in fact I had it before they named it - lol!  But, I am slowly getting back to normal and the more I read the more I find out most of my problems are from the virus itself not the treatment.  So, knowing that the true culprit is gone, I feel even more positive about my future.  I'm happy and that helps more than anything.  We can only get better!!  
Helpful - 0
Avatar universal
Sorry you are feeling so crappy. Hopefully as Trinity suggested, in time you will feel better. As others have said, most go forward without long lasting health issues. The majority of people here (you may have gathered) have done well post tx.

Most here are internet savvy and know that treatment drugs could lead to long-term problems before they begin treatment. Heck, any drug can lead to long term issues. So I don't think you need to worry about people that have navigated to this site needing to be warned.

Unfortunate that your Doc didn't convey or that you didn't fully grasp all aspects of treatment. Do your best to find another doctor, that you feel comfortable with. Sometimes a tough thing to do also!

There are a few people who frequent the board and are struggling post-treatment as well. Hopefully they will catch your post and offer some support/suggestions for dealing with what you have going on. Try to be optimistic. The odds are with you, give it a bit more time and you will be on the path to your "old" self for the most part.

Helpful - 0
419309 tn?1326503291
" I too have taken the interferon and ribivarin treatment for 6 months.  I actually thought all my side affects were from old age. "
---------------------
You were probably actually right.  Beware the power of suggestion.

"People should not be used as guinea pigs, guinea pigs that a profit can be made from!!!  What is this world coming to?! "
----------------------
Many people here have been brave enough to volunteer themselves as "guinea pigs" -- participating in clinical trials -- in hopes of ridding themselves of this dreadful disease and knowingly putting themselves at risk for the good of the many.  As I see it, the people who profit are those who get to SVR such as yourself, because it is largely on the backs of people who treated in years past as true 'guinea pigs' that SVR is possible.

It's always important to be confident in your health provider -- if you feel your doctor is treating you poorly, it's well advised to seek a second opinion.  Good luck, and best wishes to you for improving health. ~eureka

Hector: Here, here:  we should all hope to be half as lucid and articulate as you even with HE... !  
Helpful - 0
446474 tn?1446347682
Thanks Trin. Just my 2 cents worth.

Hectorsf
Helpful - 0
Avatar universal
Bravo Hector, I hear ya brother!!
Helpful - 0
446474 tn?1446347682
Sorry your having so many issues.

We are all adults. We made the choice to treat or not. Your doctor or the drug companies didn't force you or anyone else to treat. We have the option to deny any treatment, even treatment that can save our lives. We can choose to die instead. It happens every day.

Please take responsibility for your own action and not blame others for the choices you make or don't make. "I think something has to be done to warn people about this treatment". Did you ever read the warning label that came with your meds??? Health is each persons responsibility once we become an adult.

Your health and life is worth more then $3,500. Right? Sorry, life isn't fair. Any idea what it costs not to treat and have liver failure or liver cancer? Or have a liver transplant? One month of post transplant meds alone costs twice that amount so you need good insurance to cover as much as possile.

I think most of the symptoms that you are complaining about are unrelated to the treatment meds. We can have other health issues while having chronic hep C. Please follow through with a doctor to help you with these issues. Self diagnosis isn't all its cracked up to be.

I find it "interesting" that you can complain about successfully having been treated. Ever think about us who have failed treatment and are slowly dieing with end-stage liver failure. Unless we get a new liver we only have a few years to live at most. What we wouldn't do to be SVR!!!

What's this world coming to? You are 57. I am 58. I would suggest you stopped thinking all about yourself for a minute you might realize how lucky you are to have the option to treat. You should know by now that most people in the world die from illnesses that are completely preventable or curable but have no options for getting any health treatment.

Yes, if you don't feel like your doc is helping you be proactive and find someone who will. It might help you state of outrage if you think more about what you have, instead of what you don't have. I bet you have a lot of things in your life to be grateful for. Friends, family, love, a place to live, a job,etc etc. From where I'm standing your life prognosis looks pretty good.

I'm am sorry for your suffering and I hope things work out for you in time. It just make me a little angry to hear you complain since you have been successfully been cured of this disease by those evil drugs. My life is on hold. I have a hard time functioning every day. But I know many people who are suffering way more then me. So it keeps it all in perspective. I am grateful for every day I am alive. Suffering or not. I have to do what I can to keep on living so what's the point of worrying about the other stuff if I'm not around?

Sorry if this is somewhat incoherent as my encephalopathy is acting up right now.

Best of luck to you! Hope you feel better soon.

Hectorsf
Helpful - 0
179856 tn?1333547362
Most folks who do treatment live perfectly normal healthy productive lives and they consider any side effect that might remain a trade off of dying of end stage liver disease.

It took me over a year to feel somewhat 'normal' again. But we have it lucky - look at  those who go through real chemo and radiation and end up in much, much worse shapen than us.

You are UND give yourself a bit of time before you consider yourself some long term legacy thing - a bit of optimism probably would carry you a long long way!
Helpful - 0
Avatar universal
"I'm detecting a long-term legacy to Pegasys/Copegus tx.  This is not what I was told to expect! "

Your are six week post treatment and I would like to know what crystal ball you're using to predicts a long-term legacy of post treatment side effects.  

Geez, give yourself some time to heal.  Everyone reacts differently while taking the medications and they also recover differently.  See if you feel the same way in six months or a year.

Trinity
Helpful - 0
Avatar universal
Hi, I certainly understand your feelings. Yet, we all make our decisions priot to tx. We all sign the papers (I guess?) stating possible sx from interferon/riba treatment. I remember what a struggle it was for me to agree to tx. Mainly, because I read a lot of posts like yours. It sounded pretty scary to me, but then when I started taking tx, I actually was surprised how "not so bad" the sx were in my case. It wasn't easy, but certainly, not as bad as I expected it to be... Perhaps, it was because I am younger than you, perhaps for some other unknown reasons. But I have had hep C since I was born, and started treatment when I was 33. I certainly am very glad tx is over. First month post tx I felt even worse than during tx, but now I am getting closer to 3 months post-tx and I feel GREAT. No sx, I feel more energetic than I've been prior tx. How long has it been for you? When did you finish your tx? I hope you will start feeling better (my doc said it could take up to 2 years for some patients to clear side effects)... Wishing you the best.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.