Not sure if I can continue---?

60 years old 1b geno on triple treatment for 4 weeks and stage 4 cirrhosis- on 3rd day of headache I cannot stop or cope with, throwing up and cannot imagine taking more of these toxic pills or how I could keep them in me.  I feel like I am killing myself off.  Last dose of Invicik, Riba and Peg all last night...... how do I find the ability to go on with this treatment when I cannot function?
So sick, explosive bowels, vision issues, this horrible headache, non stop nausea, vomiting.  Doctors office just says go to emergency room if I feel I need to...... do I stop this insanity?    

[can-do-man]

Sorry your having so many problems, not taking all your meds for the day is not really a good ideal. For some people treatment is just to hard on them but being cirrhotic is no good either....... Hoping you feel better.

[pooh55811]

I am so sorry to hear that you are still suffering from such severe side effects. It sounds like your side effects are not being managed very well.

The headache and the nausea and vomiting seem to be the most critical side effects to get under control now (ASAP). They are jeopardizing your treatment success. It may be a good idea to go to the emergency room and get treatment for the headaches, nausea and vomiting. You do need relief now and the ER seems to be your only option.

I don't know what your vision issues are. If the issues are loss of vision or pain in the eyes or partial loss of vision or a drape over part of your vision then the ER should also check the eyes for retinal detachment. They may have to call in an opthamologist to do it. If the vision is  a little blurry or focusing is not as clear, those are pretty common. It's one reason I cannot read on treatment.

The bowels also need to get under control. I used Loperimide as needed. If Loperimide is not working, they can prescribe Lomotil for the explosive diarrhea.

As far as continuing on with treatment, only you can make that decision. Whichever decision you make needs to be made ASAP because, if you are going to continue treatment, you need to take the pills soon, very soon. There is already a gap in the frequency of the medications, especially the Incivek.

I know you are sick as can be but I would suggest trying to weigh the pros and cons of stopping treatment and try to continue treatment if at all possible. If you were at liver fibrosis stage 1 then you have time on your side. But you have cirrhosis. You are 60 years old. Time is not your friend. No one knows how fast your liver fibrosis is going to progress, but you already have cirrhosis so it is progressing. No one knows how long your cirrhosis will stay compensated and when you will develop decompensated liver disease. You do not want to end up with End Stage Liver Disease. This triple med treatment is very difficult, but if it cures you, then you can go on with your life and live a normal life. If you stop now, you cannot retreat with the current protease inhibitors (Incivek or Victrelis) due to resistance issues. It could be several years before any of the newer Hep C meds are available for treatment (other than studies). So it is extremely important to consider the possible consequences of stopping treatment now.

If it was me, I would try everything possible to continue treatment. I would go to the ER now if necessary (and it sounds like it is necessary). Then this week I would try to find a doctor who is more responsive to managing the side effects and getting them under control with appropriate medication.

I truly hope you get relief soon and get the medical care you need.

[FrontRangeMom]

Grammy: your doctor should be able to prescribe meds to help with your side effects. For diarrhea, try Imodium (immodium), you can get it over the counter and you can get a generic for low cost.

I feel your pain. I spent the Incivik weeks in bed. I was able to control the diarrhea with Imodium (immodium) with a "helping" of Tucks and preparation H on the side. I was given promethazine for the nausea and vomiting - you need a prescription for that.

Keep your chin up and try to remain on treatment. The time goes by pretty fast. I too have cirrhosis and have reached 43 out of 48 weeks. That felt like forever when I first started.

Regards - Mom

[GrammyA]

Thank you - I am going to start swallowing some of these pills and try again and appreciate all your words of wisdom.

[GrammyA]

Thank you

[GrammyA]

Thanks for sharing your words and strength.

[FaithforHealing]

It is heartbreaking to read posts like this; we really do feel for you, and especially the anxiety of not getting answers or help from your doctor.

I don't understand these doctors who respond to someone in your position with nothing, but "go to the ER" Is this a private doctor or a trial?

Regardless, since you were told to go to the ER, I'd go there and say, "I talked to my doctor and he told me to go to the ER."  I think they will take that seriously. Hopefully, they will have good people on staff who can address your issues. Dehydration seems to be one impending serious concern with your vomiting. Also, they should realize the serious consequences of not getting your HCV meds as prescribed.

Go, and good luck! Keep us posted.

[trolleater]

  I know how you feel, my biggest thing is the rash, It is making me want to quit, but at week four I am UND, so this treatment works, but everyday I force myself to take this, and I just want to scream, I am so angry, my whole life is turned upside down, I am not working because this treatment is making me so sick, and the depression from the interferon makes me cry like a little girl for a couple of days after shot, half of my body is covered in rash, and the bill collectors keep calling... then I look at my kids, my six year old keeps telling me of all the daddy son days we will have, and the games we will play when I am better, my daughter calls to check on me even when she is just upstairs, so I dont know how I could quit, I am not doing this just for me....Hang in there, I am the biggest cry baby in the world, and I will hang right in there with you through this whole thing.... I so hope you start to get better.  I dont pray often but I will for you because I do know your pain.........trolleater

[Steph_MHModerator]

Hi GrammyA,

While MedHelp is certainly a supportive community, we are not a substitute for emergency professional medical care.  Please go to the Emergency Room to get some relief from your symptoms.  

Please update us on your symptoms.  We wish you the best.

Stephanie
Moderator

[orphanedhawk]

During my first treatment my GI was going to stop treatment. Instead I switched to a hepatologist experienced with hep C.
If you can do the same, I'd highly recommend it. You need someone who really knows about this virus and treatment.
My hepatologist will do most anything to keep a patient on treatment including giving various prescriptions or doing a dose reduction. But if he thinks the patient is endangered, he does indeed stop treatment.

I asked his nurse once when I should consider going to the ER. She said if I'm vomiting blood, have diarrhea that won't stop or a sustained high fever. Getting an infection while on treatment is not a good thing, and can indeed happen.

Go to the ER. Tell them you're on treatment.
The doctor may have not been available because of the weekend.

Let us know how it goes.
Wishing you the best~

[coeric]

my heart goes out to you, i had some of the same side effects as you.  if you have vomiting and diarrhea that cannot be controlled then please go to the ER.

it is difficult to know how hard to push the treatment. but i hope with the help you receive at the emergency room you can at least make it long enough on treatment to talk it over with your treating doc. and then decide how to proceed.

my thought and prayers are with you tonight.
blessings
eric

[Idyllic]

Wow sorry you have having such a hard go of it. Incivek can really come with bad sides. There are a few people on here who switched to Victrellis by days 3 and 4 and I am very interested to see how they progress. Their individual doctors seemed to think they have a fighting chance this early in the game so it will be interesting to see what happens.

I was just "thinking out loud" But if you can't switch meds then maybe you might want to consider seeing another doctor. I would never in a million years tell someone to dump their doctor - but what I am saying is that very few of us are treating with the first or even second doctor we ever met. If it looks like you only choice is to quit then I guess I am thinking what would the harm be to do like Orphanedhawk did and see someone else.

There has to be a reason you are not responding to OTC anti-diarrhoeal meds. I'm unclear what your doc has done to address your rash so I will leave that to the other posts.

It sounds like the Zofran kind of worked at first but ultimately ended up causing worse headaches. If the Tramadol, Hydrocodone, Tylenol, Advil and or ice packs are not helping then it might be time to consider a different route of pain management.

Not to mention "Common side effects of Tramadol include nausea, pain, fatigue, nausea and vomiting." Ditto with the Hydrocodone.
http://www.ehealthme.com/ds/tramadol/neurological+symptom

It seems like if you could overcome this one thing the rest might be surmountable - indeed, the rest might be manageable. I know that when we are in pain everything can seem overwhelming. I encourage you to hang in there until Monday and ask for a referral for a specialist. Definitely to see a neurologist but perhaps maybe a Hepatologist. Treating the virus often involves collaboration with other doctors when there are underlying (new or existing) conditions.


There are all just ideas since I know you must feel frustrated and trapped  and like you are out of options since the traditional stuff does not seem to be helping. In other words I am just spit balling here.

I agree with the others if you think you need to go to the ER then you should definitely go. I am not sure the extent of trouble shooting they will do since their goal is usually to address and treat the chief complaint. It seems to me if by self-report the cause of a problem is a drug-related nausea & headaches or a drug reaction their first action might be to address the drugs the patient suspects is the cause of the problem. (??)

I hate to see you throw away your chance to clear the virus. I know the last thing you probably feel like doing is experimenting with different meds - or doctors. Again I am truly sorry this is happening.  Ultimately the decision to persevere is yours to make.
I hope you feel better soon.
God Bless

[zako7]

Sorry to read your treatment problems. This forum is supper supportive. I think every response from members to your post is very valuable. Please take time read them and understand them. Orphanedwalk made a very good and a basic suggestion which is as a cirrhotic you need to be treating with a hepatologist. I understand your age as regards treatment. It may be harder for you but nothing compares to saving your life. Always remove from your mind that treatment is "insanity". Everybody doing the treatment has experienced almost the same or even worst. They came to this forum, they found strenght, insight, solutions and inspiration and broke away from fear of tx sx and pushed to the finishing line and SVR in the bag. Members will be here for you every step of your way.

[FaithforHealing]

Hopefully, GrammyA listened to Stephanie, the Moderator, several hours ago and is in the ER getting help.

[fretboard]

Doctors office just says go to emergency room if I feel I need to...... do I stop this insanity?
----------------------------------------------------------------------------------------
Sorry you're going through such brutal sx's.  With that said, your doctor should give you something instead of simply referring you to the ER.  Maybe you should ask your doctor for something that will help keep the explosive diarrhea at bay.  I suggest you talk to your doctor at length when you are feeling bad so he can see it for himself.  Most doctors have never taken interferon or riba so all they know is books and what the side effects are.  They don't know that some of us on tx drugs go through some of the worse sx's possible.  Get that doctor to write a script for something or get to the ER.   good luck!!      

[GrammyA]

Well, I listened to all of your great advice and decided to get back on the TX horse.  I did end up missing 2 doses of the Incivek and 1 dose of the Riba and hopefully that will not damage my program too much, however there was absolutely no way at that time I could keep the pills inside me anyway.  It is over now.  I want this to work so I will try to be stronger and have an appt. to see my doctor on Tuesday.  That will be my 4 week lab work and at that time I will have a chance to address some of the side effect issues and attempt to get some solutions in advance for next time I feel like it is all exploding at the same time.
Again, thank you sooooo much for your words and support. "I know that U know"

[trolleater]

  Good to see you back, I hope that your test are UND , I almost hoped the tx was not working so I could quit, but then when I saw it was.... well it made me rethink this whole thing and realize that I can make it.  Today is a very bad day for me, the rash is really bad (all over my back) and I woke up with a headache so bad that I almost called an  ambulance, it did go away.  I have slept maybe 2-3 hrs (itching).  Last night I got a call that my best friends wife passed away, she was 49yr old, and I think the added stress and sadness had a lot to do with the insomnia also, all in all just a bad morning, then I read that you are going to give it another go, Grammy, you and I started at almost the same time (I am in wk six), so we are going through this together, I am not taking this treatment well either, I dont think anyone does, but I am having a hard time, I have a great support system with my G.I. they have a Dr. just for hep c and when I leave a message they always call back, and will give me meds for whatever problems I have, to help clear up, and then check back to see how it is working, my insurance company has a nurse that calls every week to make sure they are taking care of me, and of course I have this place which is my greatest source, the people on this site are the best, they are caring and generally concerned for all of us, I was very worried about you last night because I have mentally been where you are at, sometimes I am still there.. just think when this is all over, you can hold your head up high , and when you have to get a blood draw, you can say I used to have hep c......

[BoceprevirGal]

    Your symptoms sound so hard.  I always felt better, with as much in my stomach as possible, when I was on the Triple Tx.  Since your stomach is upset, I would try white rice, and add some unsalted butter to it, for the fat content. White rice, white bread, bananas, and apple-sauce. White foods are easier on an upset stomach. Stay strong, and good luck~

[GrammyA]

Lets keep fighting  it - together!

[trolleater]

   HOOORAAAA !!!!

[Advocate1955]

Hi Grammy,
As Idyllic mentioned above, Tramadol and Hydrocodone can both cause dizziness, headaches, and nausea too.
I'm thinking that maybe you've been in a "cycle" of nausea/vomiting, and I'm hoping that now that you're feeling a bit better you can get into a better "cycle" by making sure you have food in your stomach when you take your Riba and making sure that you're not dehydrated and drinking plenty of water.  I'm not sure why the typical medications (Zofran) and home remedies (ginger) for nausea and diarrhea haven't been working for you, but hopefully they will now.  Hopefully your doctor will realize that managing your side effects is a high priority in order for you to be able to stay on treatment.  If he/she doesn't, maybe you can switch doctors.  My husband's hepatologist and nurse practitioner have always been very responsive to any of our concerns and never hesitate to write prescriptions or offer suggestions to help manage side effects.
Congratulations for hanging in there, and I hope your side effects improve.
Advocate1955

[jerialice]

Hang tight and try to get big time help with the SX. i heard on here that you have to nip those in the bud!
good luck with your 4wk labs and getting the doc to do whatever it takes to move forward- hoping for UND for you!

[libzo2]

You are an inspiration Gram.

[Vicky948]

Hi GrammyA,
-- I'm 64 and 1b, advanced cirrhosis, failed IFN/RIBA treatment a couple years back but am now on a wonderful (so far! 8 weeks into a 24-week regimen) BMS trial without either IFN or RIBA.  No side-effects, and after week 2 my PCR was <25.  I started at 5.6 million and now I feel GREAT! If this truly does work over the longterm, 1b people like you who may not be able to tolerate triple therapy may possibly have an excellent option coming up shortly.
-- Another thing, headaches.  I get awful headaches which last several days, and they last even longer during treatment.  However I've been able to handle them really well the last few years with 1/4 of a 2.5mg tablet of Zomig or Mylan (zolmitriptan) at the beginning of each headachy day.  My doctor says it's safe for the liver at that dosage.  Maybe it could help you.  GOOD LUCK!!

[GrammyA]

Thanks trolleater - and I will pray for you too!

[Naya888]

Grammy I do not know who is your doktor but your present situation sound exactly like mine when I was at 3rd and 4rt week,constant  nasea and vomiting I lost much  more doses than you and then end up still detected /unquntifiable at 4 weeks.and told I have to do 48 weeks. Went to ER as doktor said,nobody there knew these  meds they said to stop them ,went to dermatology with rash all over me said stop the meds,my Gi said i should stop also instead prescribing me some rescue drugs.My Hg was 8 down from 14 ,he was not concern.I got some nausea drugs Ondasteron finnaly from my family Md which help.At that time I discovered this forum which helped me to fight thru,otherwise I would quit.I feel your pain and frustration very well. I am so angry I had to suffer so long unnecesarily because of so many quack there who has no right to manage this Tx.My advise to you find Hepatologist and for now try to get thru this so you are UND at 4 weeks.Follow advice from people above we all went thru this to certain degrees and know best.Good luck!!!

[cindyh113]

Hang in there it will get better. Just finished my 12 week and last dose of the Invcivek. My first few weeks were rough also. But you can do it. Sleep through as much of it you can. I did and worked also.