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Avatar universal

Want to stop

I have done one week on the triple therapy while trying to continue to work (my days are 10-12 hours). I have been sick the whole week. I have had a fever the entire week.  I know some others say they get sick for a few days from the shot but I was really sick for 3 days after the shot and then just sick (fever 100, nausaus, diaherra, rash), you name it, I got it, the the other days. There is no way I can do this treatment and work my current schedule so I am considering postponing this until March 1 and then taking a six month leave to do the treatment.  My questions is this:  will I be allowed to try it again then or will having started and stopped ruin this for me???
18 Responses
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1654058 tn?1407159066
So sry you're getting hit hard. You've already been given a lot of good advice that I couldn't add to.
My 2 cents would be this: "Think about how you're thinking."
When I'm hit hard w/ the challenges of SE, I get still and listen to the commentators running in my head. The one that brings fear, hopelessness, and dispair? I shut that voice down. I strain hard to listen to the voice that tells me that I have this ONE year (48 weeks) to have another shot at life. There are lots of folks on this forum who will shout HOPE in your ear.

Be kind to yourself. Try and listen to the voice that leads to peace. xoxoxo Karen
Helpful - 0
Avatar universal
cyn621 posted, many people took the time to responsed but no answer from her. Makes me wonder why people want to post to begin with............ Oh well, good luck
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1658980 tn?1330711550
I am sorry that you feel so badly but please don't give up.  I have worked 10-12 hour days through 5 months of sx and am just now starting to cut back to about 8 hrs. per day.  It has not been easy, no.  There were days that I went to work itching so badly from a rash and scalp problem that I could have cried and screamed.  For me, telling my boss was the best thing from the beginning.  He has been behind me from day one and on those days that are not great, I don't have to explain.  Make use of helper drugs - I would not be this far without ointments, shots, pills,steroid drops - you name it.  No one can promise you a cakewalk but there are things that help.  Please think hard about your decision - you do not want to look back ten years from now and regret that you did not do this because you are then untreatable.
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1749655 tn?1321800934
Thinking about you and hope you are feeling better today.
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1755562 tn?1314793246
i feel bad for you all. i am going to be starting treatment in month. i am a incomplete spastic quad. when i get regularly sick its  hard on me, im scared what my nerves through my body will do with this treatment. i think about all the people suffering and it eases the fright of it all.
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Avatar universal
So sorry you are having a rough time of it.  I too am on the same meds (Week 2)  and work a full time job, I am also a mother, wife, grandmother and all that other wonderful stuff.  I have been just trying to take it one day at a time.  Trying different things to fight nauseua and the dreaded rash.  For the naseua I have been drinking ginger ale and it helps.  I also found that Frito's help with the naseau.  Don't know why, but I think it has something to do with the salt in them???  Another thing that has been helping me is eating about 6 times a day.  3 of them are the dreaded 20 grams of fat, but the other 3 is just a little something, maybe a piece of toast or a banana.  I found that it eases the naseau a bit if you do not let your stomach get empty.  I have also been trying to get plenty of rest.  I have alot of support at home so I am very lucky and thankful for that.  After supper is made and cleaned up I retire to my chair and rest.  I have been trying to get at least 8-9 hours of sleep which appears to help with the fatigue.  Please try to stick with it.  We all know it is not easy, but we need to fight like we never fought before and put an end to this virus!!!!
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Avatar universal
Are you eligible for FMLA?  If you employer has more than 50 employees, you should be eligible for 12 weeks off, though it will be unpaid unless you have disability insurance.  At this point, I would do whatever it takes to continue on with treatment since you already started with the new meds.  Please contact your doctor and find out if there are things he can prescribe for some of your symptoms so you can keep going and please check with your HR at work and so what you can to ease up your schedule.  I wish you the best!
Helpful - 0
Avatar universal
I am sorry you are having such a difficult start. I am on the same meds as you, week 7, also work 10-12 hours a day. The early weeks are the most difficult as you adjust to the sides. I admit there were times when I wondered how I would keep going for 6 months and then began to focus on dealing with the sides I currently had and trying to take it one day, one week at a time. I always hated to hear that kind of stuff before but it has carried me thus far. Things have improved much especially with an undetectable reading at week 4. Try motrin for the flu symptoms (it never did much for me in the past- it does now-don't know why), try fiber for diarrhea (I love bran flakes-one small bowl of bran cereal a day and no diarrhea). Get some cream for the rash and your doc can give you something for the nausea. I would call right away on that. It is real tough to deal withthe nausea but for me that element is gone at least for now and that is all I am worried about. Good luck to you! I hope you can hold on.
G
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Avatar universal
Now that your already on the Incivek i have to disagree with the postor on just going with SOC. You would then be looking at 48 weeks of treatment instead of 24 with about half the odds, plus a relaspe might cause you not to be able to do the Incivek again do to developing a resistant virus.

Alot of us thought about throwing the towel in sometimes, just try i give it some more time things likely will get better.......... Hang in there.
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789911 tn?1368636783
dont forget the strong cortizone ointment or creme for the rash.  Get something from the doc!
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789911 tn?1368636783
I hate it for you that you feel like stopping.  I totally understand.  You know what you can handle and what you can't.  With that being said, If there is anyway you can hang on, please try.   I dont know your health status,  but there are so many things you could take to help you thru this period.  Anti nausea meds, tyenol, anti diarrhea meds,  get your doc to order a CBC now and see how your blood levels are doing,   Im here to tell you if you can get these things straightened out you'll do much better.   Got any sick leave you can use?  Can you cut back some hours,  working is good to make the time go by faster, It makes you get out of bed in the am.   We are here for you when you need to talk about how your doing.    
For all you know, you could be undetectable right now and on your way!  I dont know how many weeks before the resistance variable comes in if you stop.   Im already on week 13 and the first 4-5 weeks were really tough,  I took my last dose of incivek on Wednesday.  Please let us know how you are getting along.   Best wishes   Lydia
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408795 tn?1324935675
That's terrible that you feel so bad.  Another option is just to go with SOC cause you may be able to clear without the Incivek.  I mean unless you're in a trial you're your own boss, right?  Also, in a week or so you may be fine and done with all the sx's.  Of course you would want to talk to your doctor first but if you've already gone for a few weeks of SOC it might be easier for you.  Just a thought, good luck with your decision!!

  
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1749655 tn?1321800934
I, too, had a very rough week 1....same sx that you describe but for the rash.  I had diarrhea so badly that I could barely make it to the toilet and then due to the pain could barely get off the toilet.  I had a fever from Friday night to Thursday morning.  I was nauseous that I could barely choke down a 1/2 cup of ice cream necessary to take the incivek.

But let me tell you, Week 2 was totally different.  Yes I ran a fever over the weekend but only in the evenings.  I still had diarrhea but not as severe.  I suffered from occassional nausea.  Overall, however, I had a great week.  

I work in a professional capacity and own my own business.  My days are long but if I really get tired and have no appointments, I do have the freedom to go home.  I think you do need to talk to your boss.  You don't have to give details, but you should explain the medicine you are taking and its side-effects.

I urge you to hang in there and not to make a hasty judgment that you might later regret.  I did not expect this to be easy and have tried 2 times before to clear this damn virus.  Week 1 was much harder than I expected, but I will not give up.  The results of this course of treatment are so promising that I have to take advantage of this opportunity.  You do too!  Please try to make it through another week one day at a time.  Take this weekend to rest.  Drink lots and lots of water.  Do not drink coffee.  Eat more cheese and peanut butter.  I incorporated these things and do believe they have helped alleviate the diarrhea.

I also urge you to discuss your options with your physician before you make any unilateral decision.  In the end only you know what is right for you.  But I think you need to give yourself a chance.

Good luck.
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1756592 tn?1315363237
Goodluck Cyn I hope things get better for you and you can continue to find the strength and will to keep going with your treatment.
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1751426 tn?1399007484
I have just finished wk 4 of triple tx and I thought I would breeze through with little or no sfx.  I was very vocal about my condition and entering a clinical trial at work so no one was caought unawares (except me).  First day of tx left me puking and running for the washroom feeling all messed up and sick as a dog.  Somehow I made it through that first day but since then I am putting myself first and I want to be cured.  Today I called my boss and told them I won't be coming in for at least 8 weeks maybe more.  Luckily I have a union job with sick leave/EI benefits so it's a no brainer.  My heart goes out to all the troopers who struggle through all those sfx while continuing to work - BRUTAL.  
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Avatar universal
good words from Spectda. Since you're  on inci/tela the sx  are due to all three, not  to an ifn/rbv lead in. The decision to stop is not an easy one and it's definitely worth talking to your Dr. while still taking the meds.

The old ifn/rbv mantra of  "if at first you don't succeed try again" does not necessarily hold for triple. There is zero data on how soon you can reuse the PI and how effective it will be, though there are promising indications that resistant variants usually are replaced over time. Good luck!
Helpful - 0
190885 tn?1333025891
boy do i know about being sick...i want to work so bad but can't...i have so many sx..my anemia is way out of hand so i would just pass out if i had to do almost anything...last two days i feel like throwing up almost all the time...for now work is out of the question...i'm lucky to have lots of help and for now i'll have to find a way to keep going...i always thought i would be one of the folks with light sx..so much for that....anyway i'm on shot 5 in two days and trying to hang in there....i think you should do as much as you can to continue tx...i feel like if i can make it another 2 weeks the rest will be easier....i wish you good luck....billy
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Avatar universal
What triple therapy are you on? If you are taking Incivek already then you could develop resistant virus by stopping so early that will not allow you to treat again with a similar protease inhibitor for 2-3 years. Also there is no data yet about people who retreat several years after having taken one of these new drugs.

Did you no understand that this treatment can be really tough before you started? I am sorry that you are feeling so poorly. What you are describing sounds like par for the course for hep c treatment, but everyone's tolerance is different. I hope you can stick it out but if you can't do it you should thoroughly discuss this with your doctor and be prepared for possibly waiting a long while to treat again. Are you seeing a hepatologist who has expertise with these drugs?

Good luck,
Dave
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