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week 12 and UND...sad n wanna quit

My doctor told me I was UND at week 12...The side effects are too much for me. The tiredness, the itching, depression andd sadness for no reason. Should I quit? i dont know what to do...will I relapse if i quit now? does anyone have this experience?
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338734 tn?1377160168
It is the drugs that cause your depression. Sometimes antidepressant drugs can help. I just want to reitterate the advice of NYGirl, Bill, Trin and others to make the most of this treatment. Don't quit. Get help in the way of rescue drugs for cytopenias if you can. You are already in the deep end so swim for the far end. It will be easier in the long run than having to deal with treatment again under more difficult circumstances and lesser odds of success.  GOOD LUCK!!!!

Brent
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Avatar universal
Have you heard of an online support group called hepcnomads.co.uk ???
I am on there...life saving x
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Avatar universal
I'm in the same situation as you are, tired, itchy depressed and irritable.  I'm in week 19 of 48.  I will not quit.  If I have to go through this whole thing all over again, it will be because the meds didn't work, not because I decided to quit.
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Avatar universal
Hang in there.As my husbands doc told us when we got the UND status @wk 12.Not to yippeee yet.He said "this does not mean treatment is working,it just means that treatment is not NOT working."It seemed weird to us the way he said it but if you think about it he is right.Wish you the best.
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250084 tn?1303307435
Amazing how long ones posts can get without realizing it!
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250084 tn?1303307435
Hi Quietstorm, so sorry your going through this so young and sure it's tough with a 2 yr old full of endless energy!  You may want to show your husband some of this, some facts on the sides of tx so he is prepared, and understanding in taking over some days with him,  for days like yesterday, days you want to just crawl in a hole and rest, rest, veg, even melt down. Days you NEED to.
  I can't tell you how many threads I posted saying "I have to quit", "I think it's killing me". Nor how many times I felt that way. MANY of us did and do. And then soooo many here would come here and coach me on, and often, as sometimes needed...."buck up and keep going!" You will need to vent, whine, cry and that's all welcome here and probably the only place you will have so many that have been through exactly what your going thru, and truly know. I know I would have quit, never gotten thru it without this place, the people.
Another good piece of advise I got here, in trying to live my 'normal' life at the start of tx (busy, rush, rush, handle everything, etc) is that 'the world will revolve if you get off for awhile" and it did. Allow yourself the bad days, the TLC you need during this. Do not feel guilty and do not feel it's unusual. These drugs, as many stated, can be h*ll, disrupt so many normal things in your body, your mental health as well. On the hard days, keep thinking, know, that there will be some more easier ones too. Use energy when you have it , even at 3 am. A lot of jokes during my tx about shampooing rugs at 4 am and cleaning up my garage until 5 am. If you feel like doing it, do. If you can't that day, the vacuuming, chores can wait a day. It's just not that important thru this, taking care of yourself is.

And yes, quitting now your odds are slim to none.

Some questions......
  I don't see your geno type anywhere? Nor the amount of time your doing tx.
Did you have any viral load test before the 12 weeks UND labs?

Have you seen, read some of the tips here in tx? Read any past threads? Reading a LOT of past ones brings a wealth of information. Like drinking a LOT of water, it is detrimental during tx. Or how getting any nutrition in you is a must, if you can't eat much, make healthy shakes (yogurt, fruit, instant breakfast, etc). When you are very fatigued, and push it, force yourself to do too much, you will suffer for it, even for days. I learned that the hard ways (didn't listen here!). Lots of helpful tips here.

The best one though, is take care of you during this, you can give your 'all' to everyone again once you are done, healed and cured :)
And keep on venting, it's what we're all here for.

Push on dear, better days ahead, LL
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179856 tn?1333547362
Dear Quiet,

As everyone is saying hang in there!  I finished my 72 weeks three years ago and have been CURED since then. It's worth it :)  I wasn't very much good to my children at the time but every time I wanted to give up I had to remember I was doing it for THEM - so that I would still be here many years to come to love them.

So, try not to think of it as you aren't doing anything except laying on the couch right now.  What you are DOING is taking care of your child.......where would he be without you?

It will be over sooner than you think and you will have a lifetime of health and happiness to spend enjoying yourself AND your child.

it doesn't get any better than that!  :)
deb
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1051313 tn?1284780795
Hey, Hang in there.  It is sooo hard, I know.  I finished my 48 weeks March 5.  Now, it almost seems like a long time ago.  But I remember feeling exactly like you.  I have a nice husband and three kids.  I felt guilty for being so miserable all the time, I felt like I was this big damper on everyone, but they never felt that.  They were great to me and the more they understood, the more sympathetic and forgiving they became. I cried, complained and yelled at them when I wasn't sleeping! I was cranky and crazy.  I fed them crap and they didn't complain D;
I came here too looking for some hope and found so much more.  I remember how good it felt to be validated.  I thought I was going crazy, but I found out all my experiences were not only normal, but actually  not as bad as some.
I think most people would agree, there are good days, and there are lousy days. Take advantage of the good days and try to survive the bad ones.  At first I tried to fight the fatigue, but then I just submitted to it knowing that it really was temporary and there was nothing I could really do anyway.  So I slept whenever I could. My house was a disaster and  I think I need a new mattress now!.
No one will deny that is hard on the family.  After all, your the mom.  But they love you and want you to be better.  Now that I am done, my kids are happy and tell me how happy they are because I am feeling better.
You will make it. Through Summer Vacation, 4th of July, School events, weddings, funerals, Holidays and even a trip to the grocery store.  It is hard but most of us make it to the end and are so glad we gave it our best.
When it was over, I started feeling mentally better pretty soon.   Probably within the first couple of weeks.  I didn't take any anti D's (but they probably would have helped!)
I wish you well. Share with your family that it's the meds. I hope you can get some help and you will stay well.
Vicky
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Avatar universal
Thank you guys for all of your comments. It really means a lot to read the fact that Im not the only one who felt llike quitting. Looking back at how I felt yesterday, I dont wanna come off like I am ungrateful. I am, very grateful to have this opportunity to get my life back and to be making good progress. I needed to let it out because sometimes this treatment messes with my head and I honestly contemplate quitting but if it came down to it, I wouldnt be able to live with the guilt of knowing that I was almost halfway there, and ruined it.

There are also a lot of stresses that add to my misery on treatment. I have a 2 year old who runs me more ragged than I already am. Its hard to juggle it all because I dont want to take away from my son, time that I could be spending with him instead of being a corpse on the couch. I want to be as normal as I can but working, married, kid, treatment....burning the candle at both ends. So I have my moments that makes me question why I am doing this, at THIS POINT. Maybe its too much right now.

When I started treatment I was so determined, I could taste the hunger to get better. Now I am trying to get bits and pieces of that back. The only hunger I feel right now is for sleep. Insomnia, coupled with lack of rest, stress meds etc; yah, you go a little nutty.

To answer the questions, I did have a biopsy done and I have very little swelling, stage 1 fibrosis. My doctor didnt seem too concerned with it, I of course was petrified. My white blood cells are being monitored extremely close because they were very low and the doc says if they go down even more I may have to be on another med to help elevate.

Anyway, thank you for all of your support and comments, I would like to get to know  more of your stories and hope to hear from you all. Thank you for guiding me through one of my "i swear im going to quit today", temper tantrums :)
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Avatar universal
A congratulatory salute to you on your last shot.  Even though you probably feel like poop it's still a good feeling to know you're at the end.  Things will improve over the next month and wishing you a mighty SVR.

Trinity
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656703 tn?1224536603
HANG IN THERE! I have had all of the side effects you mention. There is medication to deal with the side effects and it sounds like you need some anti depressents. By the way, it doesn't always get worse!

My last injection today. Week 47, 48th shot, 1 week of Ribavirin pills to go.  My results are good. The undetectables are undetectable and the non reactives are non reactive.
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Avatar universal
First of all ((((((((((((((((HUGZ))))))))))))) Treatment *****. By the time I was where you are at now, I was convinced the treatment was going to kill me. My blood levels were in the toilet, my hair was falling out, and I was so short of breath from the anemia that (if i wasn't so weak!) I would have rolled a little old lady for her oxygen bottles! (I'm not really sure that would have helped, but I was grasping at ANYTHING that could possibly make me feel better. At one point I even made up a little "treatment pity party" tune...
(to the tune of Achy Breaky Heart) -Picture some poor soul going through treatment, madly scratching like a monkey and then doing the "poodle scoot" across the floor...
                                                 Riba Rash Boogie
                           C'mon scritch my back,
                           My itchy scritchy back,
                           Riba rash breakout dont'cha know?
                           Then I scritch my sides, my itchy scritchy sides,
                           and I scootch my rump across the floor!

P.S. some of the remedies I found to help...For the night-time "leather tongue" -Oragel's mouth moisturizer -it lasts several hours and keeps your tongue from adhering to the roof of your mouth. For insomnia, 1-3 mg meletonin tabs. For the mad itching...Aveeno bath and body oil (heaven in a bottle) -bath in warm, not hot water and pat dry...Visiting Delphi live chat forums out-of-bounds room for heppers of all stages (quite hilarious but they can get a bit naughty -so not for the easily offended!)
Hang in there. More than likely you need some anti-Ds to get you through txing, and you feel exceptionally cra@@y because your blood levels are tanking. Monitor them closely -they should level off soon and your body will adjust...~MM
                        
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Avatar universal
You don't have sadness and depression for no reason, you feel like that because you're taking mind-altering drugs and these are some of the side effects that can occur.  The odds are extremely high that you will relapse if you stop now.  If you stopped now and managed to stay clear, it would be a rare occurrence.  The odds are of success if you stop now are incredibly remote.  

Lots of people get fed up at a certain place in treatment.  It's important that you deal with the side effects and hang in there as long as you possibly can.  I'd talk to your doctor about meds for your depression and sadness, particularly if you find those feelings overwhelming.  A number of people on treatment found it necessary to take meds temporarily to allow them to deal with the emotional upheaval the treatment drugs can cause.  

The itching can be so frustrating.  I ended up with steroid cream from my doctor and scratched myself til I bled sometimes.  Try the suggestions for itching that have been given to you and see how it goes.  Take it a chunk at a time and don't think too far ahead.  It can overwhelm you.  Try setting shorter milestones and then when you get there, aim for another milestone, like another four weeks.  You'll hit a day eventually where it's closer to the end than it is to the beginning.

You don't mention if you've had a biopsy and if you know what stage of liver damage you're at - do you know?

Don't expect the same things out of yourself and life that you would off the drugs.  It ain't gonna happen.  You've got a mission for the next number of months and you'll get there a step at a time.

Hang in there....see if you can get that depression treated and take care of yourself.  Good luck.

Trish
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Avatar universal
Dying from end stage liver disease makes TX  walk in the park
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179856 tn?1333547362
LOL I could have used it back then I should have gotten my boss to buy me one then - gosh my job is a lot of fun!  ;)
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87972 tn?1322661239
AND… if that’s not enough, nygirl apparently has a portable lavatory you can borrow… :)
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179856 tn?1333547362
PS Trin and I were typing away like mad fools at the same time it appears sorry I covered the same stuff - great minds do think alike though!

Don't stop now - you will relapse if you do and if you have to treat again in the future it will be even harder to succeed! Make this one count!  HANG IN THERE!
Helpful - 0
179856 tn?1333547362
No you should not quit if you can possibly stay on treatment.  You are having good success here as you are one of the very lucky ones who are UND by week 12. Just ask some of us who were not and had to treatment for 72 weeks or longer!

So you see in the midst of the sadness you actually have really good reason to be happy - you are winning this battle!

Treatment *****, plain and simple.  Nobody likes it everybody hates it (guess I'll eat some worms...LOL remember that song from being a kid?)   :)

As Bill said interferon can cause all sorts of problems with depression and sadness and anxiety - really mess you up big time.  My doctor started me on Paxill a month BEFORE I started treatment so that it would help offset anything that would come up.  It takes a few weeks to work but you definitely should get your doc to write you a script ASAP it could help you a LOT!

Go out and buy a really good thick lotion - something like Gold Bond Triple Threat Anti Itch Medicated Lotion.  Put it on several times a day - it will really help with the itching.  Also hydrocortizone .1% is helpful too. I had the rashes very badly and looked like my skin was just bleeding all the time I itched so much (I still have scars from it).  I tried everything but found that the lotion really truly helped me. Also, are you drinking half your body weight in water a day (ie: if you weigh 120 you need at least 60oz of fluids).  The dehydration really is one of the reasons we develop that horrid itch.

Unfortunately the tiredness well.....it's part of treatment.  I made the day after shot day my "Day of Rest" and sat on the bed with my remote control and some ice cream and whatever other treats I could think of and made it into something sort of fun. As an adult I never really got to do much of that but this was the perfect excuse!!!!

I don't know if you are working but if you are not getting up and dressed every day and getting out of the house helps a lot.  maintainning some sort of routine where you get to see people sounds draining but it helps you to feel the normalcy of life returning.

You have a lot of hope here for success.  Try and remember treatment is not eternal - you do have an end date in sight.  We all know how miserable it can be but if I could do it then you can to. I'm a big big baby and believe me if this tired old girl could hang in there just one more day every day until the end........you do it too.

Remember just worry about today today and then the rest will all line up just fine.  Welcome to the forum - keep posting making friends in here helps a LOT (and you know what sometimes you will even laugh and have a good time too). Most of the folks in here are the best you will ever find and everyone will help you as hard as they can because they genuinely do CARE.

Good luck,
Debby (Aka very long winded Debby at this moment sorry about that but there was alot of ground to cover!)  :)
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Avatar universal
If you are a geno 1 and quit at 12 wks you will relapse.   We all experience what you are going through now to some extent.  The best thing you can do is talk with your doctor about starting an anti-depressant for the depression and sadness.  

Fatigue is a given while treating.  How are your hgb levels?  If you are experiencing hemolytic anemia it will increase the fatigue and the drug Epogen can raise the hgb levels which will make you feel more comfortable. There are medications for fatigue like Provigil but it comes with it's own side effects too.

For the itching Benadryl, Gold Bond Lotion or an Rx such Atarax can help.  Atarax can also be used to help with anxiety and insomnia.

Drinks adequate amounts of water to keep the skin hydrated because the treatment drugs cause dryness.

Talk to you doctor, there is relief for most of the side effects you are experiencing.  We can't eliminate all the bad things we go through on treatment but we can make things a little more pleasant in our lives.

You are UND by week 12 and that is a postitive factor.  Hang tough because you don't want to have to do this again so stick with it and go for that SVR.
Good Luck
Trinity
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87972 tn?1322661239
Yikes, don’t quit yet!

You haven’t mentioned any particulars yet; do you know you’re genotype? Have you undergone treatment in the past? Too many questions to even begin calculating odds of relapse at this point.

If you’re feeling depressed, it’s not surprising. Interferon can cause chemical changes to bring this on. Do you take antidepressants along with the treatment drugs? If not, it’d be wise to discuss this with your treating doctor as soon as possible.

Have you had labs done recently? The drugs can cause blood abnormalities, including hemolytic anemia that can be debilitating as well; there are many side effects that can be dealt with and successfully managed… don’t give up yet.

An undetectable viral load suggests you’re responding to the treatment for now; the odds of relapse are *extremely* high for most genotypes at this juncture; genotype 1 patients only have 45-50% odds under the best of circumstances.

Welcome to the discussion group, by the way. Others will hopefully be by soon to offer their perspectives… until then, keep your chin up and best of luck to you—

Bill

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