Aa
I am humiliated
After 9 weeks of this treatment (peg intron & ribovirian) I have to stop. I cannot take the sides anymore. I am a 1a, and am raging so bad that I have told all of the people that I love to get out of my life. I have zero quality of life right now and by continuing on with tx I will alienate everyone in my life....I asked the doc if I could just stop the ribavirian...he is not in favor of doing that. This is the hardest decision I have made in my life.....I filed 2 HR complaints at work last week and I have never filed one in my life before. I have some time to figure out what I can do...I hope you can support me
are you taking peg/intron or Pegasys?
At 8 weeks, my hubby found himself in the very same situation. He was on Peg/intron & riba. Whew! Talk about no quality of life! Anyway, he switched over to Pegasys and riba and the sides were like night and day. Pegasys was much easier to tolerate.
If you are on Peg/intron, please try Pegasys first before stopping. You have already come a long, long way...and your 12 week test is just around the bend.
...and instead of stopping, why don't you cut your dose down for a few weeks? How is your bloodwork? You might need Procrit if you are amenic.
Best wishes,
Shebee
At 8 weeks, my hubby found himself in the very same situation. He was on Peg/intron & riba. Whew! Talk about no quality of life! Anyway, he switched over to Pegasys and riba and the sides were like night and day. Pegasys was much easier to tolerate.
If you are on Peg/intron, please try Pegasys first before stopping. You have already come a long, long way...and your 12 week test is just around the bend.
...and instead of stopping, why don't you cut your dose down for a few weeks? How is your bloodwork? You might need Procrit if you are amenic.
Best wishes,
Shebee
I was diagnosed 3 years ago, went through tx with Interferon and Ribavirin. At 6 months, although there was a significently lower viral load, it was still present so they discontinued my treatment. I entered a clinical trial at UCLA and am nearly finished with my 2nd year. I am in the "non-medicated" group. When I was on the interferon, I was definately "raging" They put me on Effexor and it totally wiped me out! I literally slept for a week and then I stopped taking it! About 6 months later my MD asked me to try Zoloft. In a week, I felt SO much better! Like my old self again. I didn't feel "drugged" at all. Not up, not down. Just normal! I was on it for 6 months and am now off it, mostly because I just started forgetting to take it so I figured it was just my body's way of telling me I didn't need it.
I am 1b and stage 3-4. I am going for my second biopsy next month. I am 51 years old and in very good physical shape and have always worked physically hard all my life. My fatigue is still there and I am trying hard to "pace" myself and I force myself to rest when I can. I really like this web site... Not many "whiners" and lots of informed and educated people. Keep your chin up and try the ZOLOFT... it truly is a miracle drug!
I am 1b and stage 3-4. I am going for my second biopsy next month. I am 51 years old and in very good physical shape and have always worked physically hard all my life. My fatigue is still there and I am trying hard to "pace" myself and I force myself to rest when I can. I really like this web site... Not many "whiners" and lots of informed and educated people. Keep your chin up and try the ZOLOFT... it truly is a miracle drug!
i have one more shot and i am ready to quit today. friday seems so far away. if i had 39 weeks to go, i just don't know.......lynn
I am one of the people who have done both Pegasys and Peg-intron and for me the Pegasys was so much easier. It's no party but I really suffered with the other. People have switched and though I haven't seen any studies on switching it can't be worse than quitting all together. At least there's a chance it will work and that you will have an easier time. I would also suggest seeing a doctor about mood drugs. They can really help tremendously and you may as well explore this alternative before you just chuck it. The interferon without Ribavirin is probably a waste of time so I definitely wouldn't pursue that course. I don't know what else to tell you except I would discuss with my wife or a good and sensible friend any action like filing complaints prior to actually doing it. We can get quite impulsive on tx and it would be wise to consult another before you put things in writing. Other than that I feel for you and wish you the best. I hope that you can continue one way or another. Mike
Riba rage can be the worst, at the end of my tx I didn't think I could make it through. The friends that I told I explain the side effects and to please forgive me up front. I became very isolate to myself and that work for me and I opted not to take a mood drug. I do agree what Mike has said and try the pegasys and talk with your doctor about another drug for the riba rage. I wish you the very best in what you opt to do, you have mild damage, now, so you may wait for something better in a couple of years. Take care
I am on week 33, Pegasys and 1000 mg Riba, and it's tough. I know what you are going through. Try Xanax maybe? It calms me down within a half-hour.
I would also try to switch to Pegasys. Mike has done both and said Pegasys was easier, others have said the same thing. I would try that before stopping.
I would also try to switch to Pegasys. Mike has done both and said Pegasys was easier, others have said the same thing. I would try that before stopping.
Don't feel like you are a failure. there are new drugs out all the time. I had to stop for 8 months from anemia and neutropenia. We all have our breaking points. Mine was laying in the hospital and not being able to draw a breath from being so tired. Maybe they can cut back on the Riba. I am on half dose to start out and then will go up to full doses later on. Pegasys is easier or maybe the half dose is easier. Don't know. But am a lot better at 4 1/2 weeks than I ever was on Peg-Intron. Only got to 5th shot on Peg-Intron.
Take care and be kind to your liver.
Take care and be kind to your liver.
a couple of thoughts -
- there's no reason to feel humiliated (and it wastes energy!) Every single large test of combo therapy has reported that a sizeable fraction of patients had to discontinue because of unmanageable sides. You've seen in this forum how variable the sides are across different people. Neuropsychiatric disorders are one of the most common sides. If in your case those sides are at high end of the distribution, you have no more reason to be humiliated than if your rbc count fell through the floor.
- remember how variable the sides can be, from hour by hour to week by week. It's probably wise to give yourself a window of time, say 10 days, and make a final decision at the end of that period
- wanting *everybody* to get out of your life seems to be a pretty common reaction to tx based on the comments posted here. I was socially dysfunctional before tx, but now keep interaction with others to a minimum. The only time the most even-tempered of my dogs bit me was when I was trying to investigate one of his wounds. He just wanted to be by himself and heal.
- make sure your doc is clear about explaining both the inflammation and fibrosis components of your biopsy score. The fibrosis one is the important one and is usually scored in the range 0-4(HAI, Metavir scales) or 0-6 (modified HAI scale). If the fibrosis is in fact minor, waiting another 5-8 years for better therapy, with a biopsy in 3 years say, may be a very good choice.
Best wishes in getting through a hard time.
- there's no reason to feel humiliated (and it wastes energy!) Every single large test of combo therapy has reported that a sizeable fraction of patients had to discontinue because of unmanageable sides. You've seen in this forum how variable the sides are across different people. Neuropsychiatric disorders are one of the most common sides. If in your case those sides are at high end of the distribution, you have no more reason to be humiliated than if your rbc count fell through the floor.
- remember how variable the sides can be, from hour by hour to week by week. It's probably wise to give yourself a window of time, say 10 days, and make a final decision at the end of that period
- wanting *everybody* to get out of your life seems to be a pretty common reaction to tx based on the comments posted here. I was socially dysfunctional before tx, but now keep interaction with others to a minimum. The only time the most even-tempered of my dogs bit me was when I was trying to investigate one of his wounds. He just wanted to be by himself and heal.
- make sure your doc is clear about explaining both the inflammation and fibrosis components of your biopsy score. The fibrosis one is the important one and is usually scored in the range 0-4(HAI, Metavir scales) or 0-6 (modified HAI scale). If the fibrosis is in fact minor, waiting another 5-8 years for better therapy, with a biopsy in 3 years say, may be a very good choice.
Best wishes in getting through a hard time.
I was remiss not to echo the sentiments of others by saying you should never be humiliated. There's no shame in being sick. You're a hero for the honesty you demonstrate. Mike
Hi Lurch,
Steve here. Used to post a bit but have not lately as have been very busy and somewhat depressed. Wanted to let you know that we all understand what you are going through and you have no reason to be humiliated. We have all been where you are. My viewpoint, as a nonresponder, is that if there is any way you can, stick it out until your 12 week viral test. If it shows undetectable, or at least a two log drop, the pick up in your attitude, knowing that you are slaying the dragon, could make a lot of difference. Maybe you could even talk your Dr into an early test. Whatever you decide, the folks here will support you and help in any way they can.
Best to you and good luck,
Steve
Steve here. Used to post a bit but have not lately as have been very busy and somewhat depressed. Wanted to let you know that we all understand what you are going through and you have no reason to be humiliated. We have all been where you are. My viewpoint, as a nonresponder, is that if there is any way you can, stick it out until your 12 week viral test. If it shows undetectable, or at least a two log drop, the pick up in your attitude, knowing that you are slaying the dragon, could make a lot of difference. Maybe you could even talk your Dr into an early test. Whatever you decide, the folks here will support you and help in any way they can.
Best to you and good luck,
Steve
I am on Effexor after changing from Prozac, Neurontin was prescribed for my tingly arm, it made me insane and even more on edge. I could not take that. I am a 1a, significant viral load and the results of my biopsy showed on a scale from 0-10 with 10 being the worst, my results showed a 0.5 amount of damage. The doc is in agreement, as even though I know I will never do something my mind is playing hardball with me and making me think all sorts of crazy thoughts. I am going to manage my disease and when I have to do something about it I will.....I do feel like a failure....this sux.
Hi there Lurch,
I'm a 3a, 3months post-tx and still undetectable. Haven't posted in a while but still read the posts every day. I actually did 'quit' at week 11 but was talked into trying to hang in one more week until I could get the results of week 12 pcr....which showed the virus undetectable. I, also, alienated many but my family and true friends rallied and hung in....God bless 'em!
I'm a 3a, 3months post-tx and still undetectable. Haven't posted in a while but still read the posts every day. I actually did 'quit' at week 11 but was talked into trying to hang in one more week until I could get the results of week 12 pcr....which showed the virus undetectable. I, also, alienated many but my family and true friends rallied and hung in....God bless 'em!
I agree with oldhippiechick67 on every point. Maybe you could take a couple of weeks off to get your meds under control. I would up the dosage of your AD for starters. I am on Peg-Intron too, and the first 10 weeks were the worst. After that, I had occasional reall bad days, but overall life got a bit easier. We are all here for you whatever you decide.
Please NEVER, EVER feel humiliated. This tx can be so ruff.
I am an easy going person and while i was doing tx, I became a raging lunatic.
Its the tx. doing this to you..thing is it has to be under some amount of control. This is your life and yours only, to make this hard decision.
I wish you the BEST. I always agree with Mike Simon.
He makes so much sense to me..
Be Well,
Lize
I am an easy going person and while i was doing tx, I became a raging lunatic.
Its the tx. doing this to you..thing is it has to be under some amount of control. This is your life and yours only, to make this hard decision.
I wish you the BEST. I always agree with Mike Simon.
He makes so much sense to me..
Be Well,
Lize
"Ditto" to what Mikesimon and Willing had to say. This can be brutal for some. My hats off to anyone who does the "second" poke! Wish you the best.
Ditto on Indiana's comments. Even trying the tx is a very brave thing to do. For most of us, it is the scariest time of our lives. For every one of us who has the guts to try tx, there are 4 more who won't consider it. That is not inclucing those who can't because of other medical problems and also doesn't count all those who are avoiding medical care to even find out what is wrong with them.
I agree with mikesimon that you shouldn't feel humiliated about stopping which I hope you haven't done yet. You didn't say anything about your physical symptoms. Are you having any? If not, and rage is the only thing that's making you want to quit I"m with those that urge you to try to stick with it and try to get some meds or whatever. As long as you can get yourself to a place where you're not gonna hurt anyone (including yourself). Ask for PCR test and if you have already cleared that will give you even more incentive to go on.
I don't mean this to be cold blooded but I guess it might sound like that. If I had a choice between "alienating all the people in my life" and getting my liver healthy I would say a very sad but determined adios to all of the people in my life. Those that truly love you will come back when you get sane and healthy and those that don't .........
Stick with it if you can. Good luck to you. Travis
I don't mean this to be cold blooded but I guess it might sound like that. If I had a choice between "alienating all the people in my life" and getting my liver healthy I would say a very sad but determined adios to all of the people in my life. Those that truly love you will come back when you get sane and healthy and those that don't .........
Stick with it if you can. Good luck to you. Travis
Just adding another voice of support here. A PCR could make your decision a lot "easier", as if an easy decision here existed. Try really hard to get some help - medical, chemical help. I think Xanax can calm you the first time you take it, and am I correct, you can take it just as needed? Other AD's sometimes teke weeks to kick in, and then getting the right one/right balance can be tricky.
At 9 weeks, you're probably coming to better times, actually, in terms of sides! You've paid your "induction dues".
At 9 weeks, you're probably coming to better times, actually, in terms of sides! You've paid your "induction dues".
You haven't said if you are also seeing a Psychiatrist or other kind of "head doctor". Our Gastros or Hepatologists are fine for the general stuff but they are NOT the most highly trained in psychiatric problems. The psychotic effects of these drugs should NEVER be blown off or underestimated. It can be VERY serious for some folks. NO WAY would I stop my tx without first seeing what a real professional could offer me in that area. I believe that GIPA sends all of her patients for a psych evaluation both before and during tx. This stuff is really important.
I liked Willings analogy of getting bit by the dog when it was hurt. That can certainly apply to most of us on tx. We all feel like **** on these meds and really just want to crawl into a hole and be left alone. Unfortunately, we can't all do that. What you are feeling is normal for us. You are not crazy because you KNOW what is happening and why. You see it and know it isn't really YOU.
How you handle it now is key. Cutting the meds or changing to Pegasys might help but I really don't think that is the best course of "First Response" to this problem. Try to get an appointment FAST with a Psychiatrist and let them help you. It's NOT YOU....IT'S THE MEDS.....But those doctors should be able to work with your Hep doctors and come up with some way to help you through this.
Don't try to figure this out on your own. We are not thinking straight on tx. Use friends, family, and professionals to help get you through.
One last thing....Whatever happens NOBODY can say that you are a failure. You are giving this your BEST shot. That's all anybody can ask. Not everyone can do these meds. They affect everyone differently. You are a WINNER in my book just for having the courage to even try this tx. Not all heroes succeed but rather they are heroes for what they TRIED to do.
Best of luck..............HERO
I liked Willings analogy of getting bit by the dog when it was hurt. That can certainly apply to most of us on tx. We all feel like **** on these meds and really just want to crawl into a hole and be left alone. Unfortunately, we can't all do that. What you are feeling is normal for us. You are not crazy because you KNOW what is happening and why. You see it and know it isn't really YOU.
How you handle it now is key. Cutting the meds or changing to Pegasys might help but I really don't think that is the best course of "First Response" to this problem. Try to get an appointment FAST with a Psychiatrist and let them help you. It's NOT YOU....IT'S THE MEDS.....But those doctors should be able to work with your Hep doctors and come up with some way to help you through this.
Don't try to figure this out on your own. We are not thinking straight on tx. Use friends, family, and professionals to help get you through.
One last thing....Whatever happens NOBODY can say that you are a failure. You are giving this your BEST shot. That's all anybody can ask. Not everyone can do these meds. They affect everyone differently. You are a WINNER in my book just for having the courage to even try this tx. Not all heroes succeed but rather they are heroes for what they TRIED to do.
Best of luck..............HERO
Ditto, sorry bout the sides giving you grief. First, are you on antidepressants? I take Zoloft and it helps with my rage. The others have mentioned that Neurotin helps with rage. Ask your doc about other meds to keep you calmer...or get a psych appt with a dr. to prescribe something to help you get through these long weary weeks. I know what you mean about quality of life and alienating loved ones, I am lucky my hubby is very mellow. But my teen and I have had some "screamers". Also is there anyway you can go on short term disability till you feel better? Secondly, you ONLY (hahaha) have 3 more weeks till a PCR can be drawn...and then you would be able to tell if your viral load is down, OK? I dont remember if you said what your biopsy showed, that could tell us if you need tx NOW or can put it off another yr or so till there is a milder tx available. Thirdly, the Pegasys we have heard is supposedly better/easier with the sides. Hugs, pulling for you to make the decision that you can be at peace with.
OHC
OHC
I am so sorry that you are going through such a hard time...ONLY you know your body, and only you know what its limits are. I cannot tell you how many days I have said that I have to stop this. I think that if it were just a smidge worse, halting treatment will become a reality. You need to follow your heart and your body on this one and trust in the fact that you gave it your all. I am proud of you for recognizing that you need to stop - it takes a lot of courage to realize this. Take care of yourself and know that you have a family here to help you through this.
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