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Avatar universal

quiting treatment

ive been on the treatment now for 16 weeks and im deciding to stop treatment,im raising 2 boys 7 and 15 i have a high degree of agression and irritability,my injection day is wednesday and i stopped the tablets only satureday i know that i have a two day window. i cleared the virus in my first 4 weeks,my doctor has stated that its a high probability that it can return,i was thinking of returning to treatment in 5 to 10 years when i dont have as big a responsability,im not sure whether im being selfish or lazy,what i do know is that the boys deserve a bit better,and in that time i can still manage my health and exercise,ive been clean and sober now for the past 2 years,at the moment im feeling positive still about life...what do you think?
22 Responses
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179856 tn?1333547362
I am a single mom who treated for 72 weeks.  My odds were not as good as yours so I had to perserve.  Like Trinity said if I had had those great big fat 90%s next to my name come hell or high water wouldn't have stopped me.

That being said there were times I was positive it was my last week.  I came in here and whined and cried and said I was quitting.  Then, the encouragement of all the posts (just like you have right now) got me to thinking "Oh I can't let these guys down".  That might sound silly but just knowing others understood what I was going through and that they cared so much that I should see it through, well it gave me hope.  And hope was a great energizer.

I was an absolute witch sometimes to my poor kids - they 'understood' it was the meds but it didn't make my guilt any less.  Kids are resilient and you know they will hardly remember this one day at all.

My advice would be to hang in as long as you possibly can, one day and one week and one month at a time.  We all know how not fun treatment is........but if you can finish this now you can put it behind you and never have to look back.

You CAN do it,
Good luck.
Helpful - 0
1225178 tn?1318980604
I am extremely short tempered with my kids too. Mine are 11 and 14. I explained to them what riba rage was. It is really caused by the interferon, but "riba rage" is more memorable. Some times I'll snap at them and then realize what I did and say "sorry, riba rage" and they are very understanding. Stay to yourself as much as possible when you're feeling short tempered.

I'm at week 25 and I really understand what you're feeling... we get so sick and tired of feeling sick and tired, the thought of another day sometimes is more than we can stand. I try not to think about tomorrow... just get through today.

The light at the end of the tunnel is getting brighter, and think about this, once done and SVRed you may be able to feel better than you have for years, and have the energy that your kids will need you to have as they get to the older teen years when they will really need your involvement to keep them from making some of the mistakes we made when we were young.

Hang in there!!!
Diane
Helpful - 0
548668 tn?1394187222
And.. you said 'the boys deserve a bit better';   that's a real statement of love and whether you stop the tx or carry on, you will manage to give them a bit better by virtue of that thought.... best wishes with the outcome, and may your heart rule your stategy.
Helpful - 0
548668 tn?1394187222
You're stronger than you think you are.  Live every day as though it's your last and plan your life as though you're immortal.    

The boys are going to live without you one day - if you decide to carry on, put something in place to that you are a little more absent from them now.  AD's are a good idea.     My boy was 17 when I did 6 months tx;  sure there was a bit of aftermath to mop up, but it made us closer in the long run;  he really made some sacrifices and learnt not to rely on me while I was a physical and mental patient.   The anger came from the pressure I put myself under rather than what was, in realty, going on in his life.  I really had to back off, keep my mouth shut, keep my expectations low, block my ears, chill out and concentrate on the love.  

I struggled off to a psych for advice, tried AD's, and eventually spent a lot of time in my bedroom.   You are going through similar to Chemo - how 'normal' is that;  how angry would anyone be without support;  you have got too much to try to concentrate on and I can see how it would be absolutely not possible to try and carry on.   Every time I tried to 'talk' to my son it turned to custard - I just had to remove myself a little from his world and trust and pray we'd both get through.

It's pretty hard to think rationally on these meds and I gave up trying and stopped trying to be 'normal'.   I wasnt', the situation wasn't and the only heartening thing was that I had a choice, when there must be thousands of parents who are ill and actually looking at not being around for their children in the longer term.   If there is anyone you can ask for assistance from, now is the time.  

I'm in NZ but lived in Aust for 10 years.  At LEAST you don't have the perpetual cloud, and summer is on the roll.   Hugs and lots of prayers for your decision.

Helpful - 0
476246 tn?1418870914
If you decide to continue I would strongly suggest you start taking antidepressants. They will get rid of the anger and irritability. This is one of the most common side effects during treatment and I am surprised your doctor didn't suggest this to you. Being on AD's for the course of treatment is what got the majority of people through treatment, including myself. I stopped them slowly within 2 weeks after treatment with no problem. (Doctors suggest to do it over a few months through)

Don't worry about not having taken the riba for some days, just get back onto them.

Also, the irritability is caused by the interferon, even though most people call it the Riba rage.

This is one way to look at it.


Then.... There is always the wait and watch approach, if you have minor damage to your liver and can afford to wait for the new drugs. In the far future treatment will be shorter and the drugs won't be as invasive. They are working towards an interferon free treatment. Just be sure to get yourself checked regularly. Keep a close watch on your liver! Live as healthy as you can and stay away from any stimulants which can add to your liver deteriorating at a quicker rate.

Wishing you good luck with your decision!
Helpful - 0
1399376 tn?1287357648
I agree with the others...you have a very high chance of ridding your liver of this virus. I understand the kid issue. When I was first diagnosed, 8 yrs ago, my girls were 5 and 7. At the time, I had low vl and no liver damage, so I decided to wait for a "better time" to do treatment. I now wish I had treated before. During that 8yrs of waiting, my viral load had risen to 5.5 mil, and my liver was in stage2/grade2. I'm in the middle of tx now...also rvr, and my girls are now 13 and 15...alot of drama. When you have children, there really is no "good" time to go through treatment. My kids are my reason for doing tx...to be around as long as possible. Talk to your dr about how you're feeling. These feelings are normal during tx. I've wanted to quit a couple of times, but I have to keep reminding myself of why I'm doing this tx in the first place...my kids. Good Luck with your decision. You have to do what you feel is best for you.
Helpful - 0
Avatar universal
I agree, why stop now if you have such a good record so far? And your chances are so great. Your kids deserve a healthy mom and one to be around for them. Maybe see a counselor with your boys to help them better understand why you are soo irritable. I had to go get on drugs for anxiety and I'm really not that gripey as much. My doc put me on Buspar. Maybe give it a try before you make your final decision!! Good luck to you and your family, I will say a prayer for you!!
Helpful - 0
338734 tn?1377160168
TRIN, bali and Trish have good advice. YOU ARE VERY LUCKY to have RVR. Try it one week at a time. You have every reason for not failing.
Helpful - 0
Avatar universal
Good luck,
Mike
Helpful - 0
1264839 tn?1273676444
Hang on in there Robert, please, I am in Spain so have to have 52 weeks of treatment and I have wanted to quit many times and now with only 5 weeks left to go it is especially hard when I know most people would be thinking of finishing around now. I was viral free within the first month and could easily justify quitting but I think of my husband, my kids, my old Mum and all of the great friends who have taken my mood swings, my tantrums and my depression and still supported and loved me. I refused ant-depressants for over six months on the grounds that I had enough chemicals going around my body but I nearly lost the plot and finally accepted my consultant's advice and went on citalopram. I realise now that although treatment is tough the anxiety and depressions are yet another sympton, a treatable one. My advice is to ask your doctor, give it a try, it does help and remember, everyone in here knows what you're going through, everyone in here is willing you well and everyone here is there for you xx
Helpful - 0
163305 tn?1333668571
There was another person on this forum who stopped after 14 weeks and cleared the virus.
She was genotype two and had EVR by week 2. Then there was a guy pulled off of treatment at 7 weeks who cleared.
However, many people do the full treatment and relapse.

Nobody knows for certain whether those 16 weeks will have been 'wasted' or not.
If your liver is in good condition, there is no reason why you can't re-treat in the future when better meds are available.

I say follow your  gut instincts.
Good luck.
Helpful - 0
Avatar universal
I would assume you thought about your kids and their care before you started treatment. My guess is that you treatment is a lot more on your mind then theirs, and that this will not be a huge memory for them years from now. Perhaps years from now it may weigh on their minds much more then kids their age who are generally absorbed in their own lives.

Are you the only caretaker for the kids? What Genotype are you and what stage of liver disease do you have? You have treated for almost four months already, you have a great chance of svr because of your rapid response (there is no guarantee you will have a rapid response next time). Keep going, we all get to these points of wanting to quit. Your kids will be fine. On the other hand if you have gotten to the point where you've had enough, only you can decide that.

Good luck, don't quit,
- Dave

Helpful - 0
Avatar universal
Don't do it !!
I cleared my virus in about 8 weeks, and still did all the 48 weeks as advised by my doctor
Two years later still negative
Helpful - 0
Avatar universal
I would strongly consider hanging in there until the 24 week mark at the least.  With an RVR under your belt, there are some studies that support quitting at 24 weeks with an RVR for Genotype 1.  Not enough for me to recommend this across the board without a PI in the mix but if you are thinking of quitting and you really really can't continue...at least get yourself to 24 weeks and you have a good shot at never having to do this again.  I'm sure your boys can make it through another 8 weeks of this, yes?

Having said that ... many people hit a crossroads coming up on halfway through treatment or so.  This is tough stuff and it seems like a very long time left to go and it's already been quite a difficult haul.  This is about the point where you need to stop looking at how much left to go and set it at shorter milestones for yourself.  Say you'll get to another two weeks or another month.  Determine to get to the next milestone and then the next.  It's much easier to do it in two week increments at a time.  You can always get through another two weeks it seems but looking at it as another 32 weeks?  Overwhelming.   You don't look at the finish line, only the next goal marker and just get as far as you can.  

As for your boys ... it's great that you care about them and the impact this has on them.  The reality is that if you stop now and want to come back to this in another ten years or so, you may not have that luxury.  This is not a linear disease and you don't know how fast your liver disease will progress.  If you find yourself in a situation where it's progressing faster than you would have hoped and you're forced back into treatment, it may not be at a convenient time then either.  And frankly, you may not get the same RVR results next time.  I'm not trying to be a scaremonger, you just need to know what you're gambling with.   Right now, you have RVR in the bag - that's a *known*... and it's like a golden ticket to a Genotype 1.

Along the lines of what Trinity said, your boys are old enough to have a conversation with.  To be able to become part of your team and to work through this adversity together.   Life sends  us alot of unexpected things and it's a teaching moment for your boys to learn to deal with situations like this.  Believe me....it's not easy but kids learn resilience and they learn what they are made of and it's a good thing for them to learn that they can handle what life throws at them.  Be careful you're not protecting them too much but rather teaching them how to deal with life as it comes to us.  

I had a conversation with my adult children and warned them that the drugs would potentially alter my moods and I might be difficult to be around sometimes.  I'm sure some will remember my daughter's response to that - she offered to spray me with a water bottle if I got out of hand or put a Hannibal Lecter mask on me or an electric shock collar to keep me in line.  I'm glad my kids don't live with me or I'm sure at least one of those strategies would have been invoked!  Joking aside, have a talk with your kids and your 15 year old in particular and perhaps have a frank discussion about this and the impact of the drugs and discuss strategies to employ when you're just too grumpy.

You know your family dynamics and this is your decision to make in the end.  Nobody else's.  I would again strongly urge you to hang in there until at least 24 weeks and then take the rest a chunk at a time and if you really really feel that it's the best decision to stop now, I hope this all turns out well for all of you.  Good luck with this.

Trish
Helpful - 0
979080 tn?1323433639
this is what i think
you need to take care of yourself first to be well to be able to help others you have a great chance that many would give almost do anything for
in my view it is actually in your kids most interest that you continue tx
side effects come and go and agression or irritability can be managed relatively easily
with anti anxiety or AD meds
Helpful - 0
Avatar universal
You say your boys deserve better.  They're 7 & 14 and that is old enough to know there needs to be some changes in their life until you have finished treating.  They also deserve a father who is hepcfree but most importantly you deserve to be hepc.

I could give you a big motivational speech about why I don't think you should quit but in the end it's your decision and treatment isn't for everyone.  Having failed 72 weeks of treatment I really hate to see you give up a 90 percent chance of SVR.  I don't think wild horses could have made me quit had I been RVR but everyone is different.  

I wish you the best,
Trinity

Trinity

Helpful - 0
1431734 tn?1421011671
with such a chance to clear in your favor, i strongly urge u to revisit your decision. there are some good meds for the psychological effects of the tx, maybe even family counseling for a while to help sons understand better that u have less control of your emotions. i even named my altered personality Riba and joke with my friends when she comes out and i blame all my sharp words on her. you have made a big investment and the numbers are on your side...as the others said of course, timing has to be right and only u can decide. wishing u good luck.
Helpful - 0
338734 tn?1377160168
I agree with Hector. You were on the inside track with a 90% chance of success since you cleared by week 4. Too bad to waste that. Even TX for 24 weeks might give you a decent chance of success.

For sure TX can be very rough. I wish you the best and good health in the future.

Helpful - 0
691935 tn?1421027090
Like the first poster stated, it has to be your decision.  I'm not sure I could have completed tx if I had young children but I know others here that have.  Everyone reacts different to the tx, some with heavy, very little side effects (sx) or none.  My sx's were bad and my platelets were so low in the 4th wk the dr. was going to stop my tx.  I remember hoping he would so I would have an excuse, I was so sick and miserable.  But, my labs showed slight improvement and I continued with my dr's, husband, and this forum's encouragement.  After the 3rd month of misery I made up my mind I was going to do this if it killed me which like a fair amount of us, it almost did.  I made it 45 wks before the dr. stopped my tx. I cleared and I'm sooooooo glad it's behind me.   I did take Lexapro, an AD.  I see you just joined this forum.  Maybe you could continue for a little more, reading the posts and sharing your story.  You will get a lot of support here and believe me you need it.  I contribute my finishing tx to the folks in this forum.  Good luck to you in whatever you decide.
Helpful - 0
446474 tn?1446347682
Sorry to hear that you need to stop treatment. Since you cleared the virus by week 4, you had a 90% chance of ridding yourself of the virus. It is too bad you can't somehow manage treatment for another 8 months assuming you are genotype 1 .

As long as you have little liver damage(stage 1 or 2 of fibrosis) you can wait until you can find the appropriate time to treat. The decision of when to treat is always an individual one based on each person's circumstance and should be thought about before starting treatment.

Best of luck, whatever you decide.

Cheers.
Hectorsf
Helpful - 0
Avatar universal
I'm sorry that you are having such a tough time. I think that most people on treatment think of quitting  many  times during this extremely difficult tx.  I am on week 5 and was just telling my wife that I don't think that I can go the distance.  She  urged me to not give up, and I think that you should try to hang in there also.  You were clear at week 4, so your chances of beating this disease are very good.  

I don't know how much damage your liver has suffered, and that would weigh heavily in the decision.  I have cirrhosis, so my options are limited as I'd like to avoid end stage liver failure.  This treatment is tough on the entire family.  The last time I tx'd my sons were teenagers living at home and I was pretty harsh with them.  I was always either yelling or apologizing, but we got through it and have a very good relationship.  Unfortunately, I relapsed and have to go through it again.  I was not clear at week 4, and had some dose reductions, so my chances were reduced. You still have a good shot at this!

I guess the obvious question is whether you are on any meds for depression/ anxiety.  If not, this would be something to consider.  Also -- if you have not done so-- have a talk with your sons and explain to them that it is not their fault, but that the meds mess with your head and thaat is why you are short tempered.

Sorry for the long post, but I know your pain and wanted to help.  In short: You have 16 weeks invested in this trreatment already, and a good shot at clearing, so I think you should try to hang in for as long as possible.  Good luck in whatever you decide.
Helpful - 0
1477402 tn?1287623054
Hello, I first want to share with you that whatever you choose to do is your choice and no one else can make these huge decisions for you.  My interest/knowledge in your question is from my father having Hep. C and going through the same type of treatments.

It is a lot different for you, since you have 3 kids, and hats off to you for even getting this far.  I know the side affects that the treatment causes...it's just horrible at times.  Whatever you decide, has legitimate reasons and only you can weigh out the pro's and con's.

I will tell you that in my dad's situation, the complete treatment did give him an extra 5 or so years to be with us.  However, he suffered with the treatments most of that time (with some time off in between sessions.)  He did the 1st round with little problems.  Then they said his virus was cleared, but they wanted to do a stronger treatment, to keep it clear longer.  That treatment was horrible for him and yes, he did stop that one early.    He was also dealing with other health issues at that time and he felt his system was just not strong enough for the illnesses and the treatment.  He began looking into a healthy / holistic way of living and he added various OTC holistic vitamins, began yoga, and began eating a lot more vegi's and fruit...etc.  When he had lost a good amount of weight and felt stronger, he went back on the 2nd treatment and finished it...but it was horrible for him.  After being through with his 2nd round, he was off of it all for a good amount of time and then they found that the virus came back.  So, he went on a rd and stronger treatment that just wore him down.  He stayed on it for as long as he could and he then decided that he could live longer, but suffering or possibly die earlier...but feeling well and living life until his last day.  He chose the latter.  I was very proud of him for sticking up for what he wanted to do.  All the Drs. wanted him to cont. the treatments and my dad stood tall and explained his wishes and did not back down.

I am sorry that you have such an awful disease and I hope that you are getting help from a good support system.

LAF
Helpful - 0
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