This forum is for questions about medical issues and research aspects of
Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new
Hepatitis Social/Living with Hepatitis forum
Jamie
I'm four weeks after tx and feeling emotionally unwell. I've discussed with my doctors, the GI says it's from depression, The psychiatrist says that I still have the Riba and Interf in my blood. Don't know what to belive. I ask you because only people who went through this nightmare could say if this are still tx sx or is something wrong with my mind.
I had't never have trouble with depression and anxiety, the level seems to become unbearable, I just can't work, I can't watch tv or see people on the street without crying and feeling like my body is shaking and chills or flushes are going through my body.
Most in the world are less fortunate than I am (and I am just a middle class -- you know that vanishing breed -- American): I mean they don't get enough food, they don't have running water, they die from things we in the US take for granted. I have a contribution to make to the world before I go.
I love life and I'm scared if I don't treat I will die from complications of HCV. You know? Being diagnosed with this has made me realize just what a gift life is.
If I don't get a SVR I am treating again, and again, and again. This disease won't take me without the fight of my life. I'm going to kill it or it is going to kill me.
P.S. I ALSO OWN 3 DOGS WHO NEED DAILY WALKING AND 2 PARROTS WHO NEED THEIR CAGES CLEANED OUT EVERY DAY...LOL
My understanding is that it takes 3-6 months for the ribavarin to leave our system (someone please correct me on that). As far as the peginterferon I am not sure and not at home so don't have my handy links available.
I've read of patients rebounding quickly but also read of some of us taking 6 months to 1 year to recover from the medications.
I would try another AD or get some Valium or Xanax -- I don't see any need to suffer like you are when there are drugs to help. I am not sure if you are already on a AD or something else but I'd try that.
I know how you're feeling though. I felt better during the last few weeks of tx than now.
I really can't trust my mind? This treatment took my confidence...I lost my patience and want my life back. Fortunately I have SVR at 50/48 but thinking that I could relapse at 6 month after drives me crazy
Anyway, you're not the only one, and maybe, as posted above, a different AD might be worth a try.
But I weighed a couple of factors.
1.) The idea of living with a contagious disease and having that "cloud" hanging over me. Though I was at an age where I would most likely die of something else, If I ever was in a position to transmit it, and did, that is something that I would not want to live with.
2.) The lack of timeframe for lesser intrusive treatments. The idea of waiting on them while trying to change a lifestyle completely because of it was not very appealing.
3.) My general health and well being.
Having said that, the six months of hell was worth it, in my personal opinion....
There are alot of other issues, very real which may make people decide not to want to do TX....financial, social, job reltated, etc..etc...and any decision you make is totally your own, and should not be judged.
But those were my reasons...
When I was first diagnosed (1991), the treatments were very ineffective, so I waited and was monitored. Also doctors thought that only about one in five people with chronic HCV will progress, and I didn't look like I was a progressor... Several years ago the monitoring indicated that things had picked up the pace; the VL, the stage, the grade had all advanced from my previous benign state. Being over 50, and with the pegylated combo tx offering ~50% odds for my genotype, it was now or never. Also, for now, I had good insurance coverage.
My first tries in 2002 had to end quickly because of drastic side effects. Starting in Feb.2003, I started again with a very highly experienced Hepdoc, and he controlled the side effects; I also tolerated Pegasys better than PegIntron. Third time's the charm; just finished 48 weeks this weekend. Waiting for test results...
Once you start a major task, you've got to stick to it and give it your best shot. That's all there is to it. Maj Neni
ambush :)
Jamie
I had NO symptoms or problems before I started.
I used all that I read about Hcv and the fact that the medical community finally came out with something that could give me a reasonable shot at beating this(Peg/Intron). The odds went from less than 10% for type 1's to about 50% then.....a reasonable gamble to me.
My thinking went something like this.....I have Hcv. It's eating my liver....EVERY minute of EVERY day of EVERY year....24/7. Sure, my body "might" hold it at bay for awhile, but there's no reason to believe that it won't eventually start to overcome me. Then I'll be sick. Then the odds are worse that I will ever be able to kill it. Then, even if I do, I'll probably be stuck with whatever problems I have at that point....FOREVER. Given enough time, it WILL kill me. It's the leading cause of liver transplants for gods sake.
I want to live AND feel good too.
I also don't want to live in fear that I may infect anyone else and always feel like a "lepper" around others.
I don't want to go to bed each night knowing that something is eating my liver as I sleep.
I want to dance at my daughters wedding.
I want to have a beer while watching the Super Bowl....every year.
I don't want to be afraid to kiss my family.
I want to play with my cat and not worry when she scratches me.
I want to play with my WIFE and not worry when she scratches me.
AND.....I JUST HATE THAT DAMN DRAGON!!
Those were my thoughts as I decided to do my tx. I am almost a year post tx now after 50 weeks of Peg/Intron. I have NO regrets. We should find out this week if I win this game.
Either way....I am a winner. This whole experience has had a profound effect on my character and thought processes. I am just a better person for even attempting tx to save myself. I have shown many around me how to be winners at this game of life and that to win you have to at least try. Many people around me have benefited from my experience and seeing how I pushed myself through all this. It inspired them to push themselves through whatever their own personal problems were. We are ALL winners just for trying.
You just have to find that "thing" inside yourself that makes life worth living. Whatever trips your trigger. Find that "thing"...and then realize that if you don't fight for it with all you have, Hcv will take it away. Sooner or later.
SLAY THE DRAGON! NEVER GIVE UP! FOLLOW MEEEEEEEEEEE!!!!!!!
dheana have you had your thyroid tested? can you sleep at night? sometimes the zanax can actually cause depression.( do you use it daily?? )it did for me if i used it very much so i tried to rotate it. sometimes i used/still do use phenergan(for nausea) for sleep, or ambien. the lowest doses possible to do the job. also small amounts of the anti depressant. you may need a different anti depressant. some of the older ones can be better as far as stopping them when your ready. trazadone works for me at a low dose. many anti depressants make me weird. someone here mentioned bi polar. in some cases treatment can trigger bi polar. what does your psychiatrist say?? about the chills and flushes are you still drinking a ton of water??? im finding i still need to post tx. im still getting the cold/hot flushes in my head.
what about stress? are you expecting too much of yourself?? you need time to heal. working may have to be put on hold for a while. theres sure no way i could have held down a job on treatment. we have a home business so i am fortunate and could rest when i needed.
I decided to try tx cause things have been going downhill the last few years. Doc said I could wait cause my bx was relatively ok 3 years ago, but I got to where I couldn't work more than 60 hours a week anymore and that was causing friction, feast or famine up here for welders. Plus I wanted to see if I could get some relief from this RUQ pain I've had for the last 7 years, had to turn myself into a vegetarian because of it and I just can't get used to not being able to eat meat anymore. I sure would like to be able to go out and have a beer again too, but I guess that'll have to wait a while. Sure don't miss all the dumb stuff I used to do when I was drinking, though. I guess I just wanted to take a shot at getting some semblance of a normal life back again, being sick just plain sucks!
keep the faith, God Bless.
Tony Z
Oh, blueskies...daily infergen into your eyeballs????? I am still laughing!!!! How about under your fingernails, too????
YIKES! I almost pass out when the nurse draws blood!
Ah...it sounds like others motivate us all in some way.
All of us touch so many others, don't we? When I read your post, I realized that we all seem to put others before ourselves. We all have so much to contribute to the world. I have learned to have great patience and compassion. I have learned that it could happen to anyone. Hubby just went in for a routine check-up. (What a blessing, eh?)
When hubby is clear, I plan on working for at least another 6 months. We have never had "your money" or "my money", but once he is back to work, things will change. I will be saving all of "my money." You see, hubby has dreams also, and I plan to make them come true. Someday, he will find himself sitting on a beautiful beach with the ocean spread out before him. He can sit there as long as he likes...hours, days, or months. (ok...not years!) This will give his mind time to heal.
I hope each of you will do something really special for yourself once TX is over. Perhaps you will plan on meeting us on a beach?
(Of course, you do realize that I will not be there much of the time, don't you? I will be doing everything that is available & more!!!! LOL!)
My heart goes out to each and every one of you...
I don't think that I would handle TX very well at all.
I feel that all of you have made significant changes in my own life. I am a better person because I have met you. (You see, you have touched my life, too.)
Your,
Shebee
I decided to treatment my illness and get on treatment and start the medication and finish the medication because I was afraid of getting worse. I was scared that without giving the present treatment a try that my condition would NOT get better and then someday I would be faced with the alternative to the hepC meds, transplant or worse yet, early death due to liver failure.
I am 45 female, 2 wonderful beautiful grandchildren with one son and one daughter-in-law. Wonderful husband who I enjoy life with and just couldn't gamble with my condition and condition of my liver.
I am on week 38 of treatment heading towards week 48 with a possible 6 - 8 week extension.
Being on treatment and having the whole year of 2003 be somewhat a blur, well, YES, I am glad that I started treatment. YES, I am. I'm glad that it is almost coming to an end and YES I am thrilled that the medicine worked for me and I am clear (undectable) of the virus. That is the bonus to working so very hard to stay on treatment. Undetectable................, makes it all worth it. And if this virus should come back on me after my treatment is over, well I gave it the best effort possible. I will know in my heart and soul that I finished my recommended treatment, beat it down to undetectable and DID save my tissue from further, agressive damage.
And remember, you told me to put on my glasses on and keep my glasses on (around my week 12 or treatment) well my dear, thank you again. I've had my glasses on every day now and I can see OH SO clearly now.
I wish you and hubby all the best.................always SheBEE.
~dtr.
I also just wanted to thank you all for being there. I have learned so much about this disease and treatment from you. It's very reassuring to know that I can come here for support.
Thank you very much.
Sue
ambush :)
Moving my Pegasys shots closer together gave me a huge freakin drop in VL. I was going by the way I felt. I started feeling my worst a day or two before my shot day. My best day was the day after my shot. I kept moving my shots closer together in 12-hour increments until I felt pretty much the same all the time. I figured that meant I was at a more constant dose. So now, I gotta make sure I say that nobody should ever do this without a doctor's supervision. I started off with a slow response so I figured, what the hell. Why not give it a try? It ain't working like it's supposed to, so maybe I should listen to what my body is telling me about dosage. Of course, I've similarly experimented with illegal drugs in the past, so this was no big deal. I became an interferon junkie. I felt better during Pegasys treatment than I've ever felt in my life, but a lot of that may have been Zadaxin. I got this great rush from shooting Pegasys. It wasn't like Intron-A at all.
By the time I got to 227 mcg, twice a week, I was nearly blind. I once shot 240 mcg. The reason - 240 mcg was the highest dose ever used in a clinical trial, so humans had done it. When I shot the 240 mikes, I knew immediately why 240 mcg group had the lowest success rate. Within fifteen minutes, I could taste the stuff. Then, I started rushing, like the beginning of an allergic reaction. Then, my brains leaked out of my ears. I don't know how - but I swear I laughed through the whole thing - I knew I'd be okay in a few days. I kept laughing and saying, "Wow, that was really stupid." My wife wouldn't let me drive for a few days because I couldn't see a damn thing.
The day after that big shot, I suffered a retinal hemhorrage. I didn't tell my doctor. I figured it would go away. So whenever I tell about my retinal hemhorrage, I always show it to everyone - I had my wife take a picture. So here's the link to the picture of my retinal hemhorrage.
http://www.mkandrew.com/eyes/image1.jpg
See what self-medicating can do to you? It didn't hurt - it just looks painful. So I guess my motivation for treatment is the opportunity to indulge in drug abuse for a good cause.
Hope all of you are doing well.
Miles
will start 48 week treatment week of feb. 16.
why am i doing treatment?
BEACUSE I AM WORTH IT! ! ! !
I'M NOT DOING IT BECAUSE I LOVE MY WIFE, CHILDREN, GRANCHILD,
FRIENDS OR WHAT EVER. THE MAIN REASON IS VERY SIMPLE, I'M NOT
READY TO DIE(liver failure death is a very bad way to die, i have seen many people over the years die that way and its a slow nasty way to go) I WANT TO LIVE AND HAVE QUALITY IN MY LIFE.
I AM WORTH IT.
I AM WORTH THE SIDES.
I AM WORTH THE COST .
I AM WORTH THE PROBLEMS IT WILL CAUSE IN MY LIFE AND THE LIVES OF THOSE AROUND ME.
I AM WORTH IT.
I AM DOING IT FOR SELFISH REASONS IF YOU WANT TO SAY, BUT I DONT MIND BECAUSE.
I AM WORTH IT.
how many of you rember "I AM SOMEBODY"
well we heppers need to rember " I AM WORTH IT"
we are worth the pain, sides, cost, and problems we will experience with treatment.
as a health care professional i have alway looked down on hep-c pt's, shame on me! ! ! ! i always figured they brought the disease on them selves. i did give them the best care i could and never let my feelings effect how i treated them, but in
the back of my mind the thought always remained they brought it on them selves ( funny thing is i didnt feel this way about the aids pt's i have taken care of) well the gods have a way of waking us up sometimes, and they sure gave me one.
i do have a new attitude about the heppers i see in the er now.
they are my extended family now, and it doesnt matter how they got the dragon, just that they have the dragon.
they to ARE WORTH IT.
I AM WORTH IT.
YOU ARE WORTH IT.
WE ARE WORTH IT.
GET TREATED BEAT THE DRAGON, HAVE A NEW AND WONDERFUL LIFE.
But first I have to figure this whole "Husband" thing out. I wonder if my wife knows about this? I bet she's been keepin this a secret. The only thing I can figure out is that this must've happened while I was in my tx "Fog" days. So...I guess I'll have to start plannin a move to Utah...or wherever the Mormons live. This whole thing should be accepted there. Ya know....I bet that BADGER had something to do with this! Dam his Hide!
I may be crazy to want to take a medication that may cause for me some of the same problems I've heard described here, but I can't stand the idea of that damn dragon inside me eating away at my entrails and stealing my vitality, health, and future. Nope - I am going to insist we fight and fight with every available weapon until either I or that damn dragon lies dead in the dust.
To paraphrase the great Winston Chruchill
"We shall defend our bodies and our future, whatever the cost may be. We shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender."
And another beauty of Winston's:
"Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory, there is no survival."
God and St. George defend us - Peace and Strength to All!
How cool is it that your church is St. George - I take that as a good sign!!
Gods power to you, and thank you for your words of encouragement.
Ephesians 6:13-19 (NIV)
When we dwell on negatives, they grow and grow and grow.
Your thought life is can be controlled, but it is a battle.
For each and every negative thought, you will have to force yourself to have two positive ones. Depression is easy to tumble into, but hard to climb back out.
Most of the time you'll find that you will not have any help.
That is just the way it is...
Life is wonderful and you have much to give to others. Please don't waste days, month, or even years.
Your,
Shebee
Glad you keep going down the road...Don't stop! LOL!
My heart and prayers go out to you,
Shebee
It should have read as follows:
"Shebee or not to Bee."
LOL!