I can't eat

I'm on treatment with NM283 and pegasys.  I'm in week 34 (I think).  When I first started treatment, I was vomiting a lot.  My dose was reduced and I was ok for a while.  

Recently, I am unable to eat without vomiting.  I have phoned the nurse several times and she keeps saying that I picked up a stomach virus.  Noooooooooooooooooo, this has been getting worse and worse for several weeks now.  It is to the point that I eat a small amount in the morning, barf in the afternoon, and then I eat again later that night.  Today, I am so sick that I cannot keep anything down, including my zofran.

I usually do ok with fresh vegetables like corn and snap beans.  I can't eat canned foods, meat, fast food, fried stuff, etc. Fruit is ok sometimes.  I've also tried potatos and soup.  They take sometimes but not always.  It feels like I have morning sickness and smells gag me.  This makes changing diapers very difficult.  No, I am not pregnant.

What should I do?  Should I switch to only fresh veggies and fruit for 14 more weeks or should I demand to be seen by the doctor?  Or both?  Any food suggestions?

My monthly checkup isn't until next Friday (not this Friday).

[Alady1620]

I know there is one other person around here on NM283.  I wish that person would show up.  I'm curious to know if he/she had gastro issues towards the end of the trial.

[Morgaina]

Definately see a doc!! When I was having a real bad tummy, I put vanilla protien shake in instant porridge and used whole milk for Riba. Ready really fast before you puke and 1 bowl can last for an hour.Helped to keep my tummy calm (See your doc!!)

[jmjm530]

Are you referring to Dragon Slayer. Here's a thread where he brings up NM

http://medhelp.org/forums/hepatitis/messages/41746.html

[jmjm530]

Have they eliminated GERD (severe chronic reflux) from the equation?  If the nausea and vomitting are caused by GERD you should  probably be on a PPI like Nexium. I would definitely demand to be seen by the doctor right away and try and get to the bottom of this or at least have the symptons treated more agressively.  Not only are you losing your Zofram, it's possible you will lose some riba, not to mention the possiblity of dehydration, etc, etc.

-- Jim

[Alady1620]

I'm not taking riba and I don't think I'm losing the other.  I take my medicine (nm283 and a zofran) in the morning first thing if my stomach is ok and I'm not getting ill until the afternoons.   I think I'm getting sick when the zofran wears off.

At first I thought I was ill bc my stomach was empty but I have discovered eating makes it worse.  Sometimes I have one slice of bread and that helps.

I had reflux when I was preggers. I will ask the doctor what he thinks.

I think  you're right.  I am on an experimental drug and the doctor should be made aware of the problems I'm having.

Thanks for reinforcing that, jmjm.  :0)

[EquineLori]

Does anyone know if Phennergin (sp) is an option for ALADY1620?  Of course, Jim (et.al.) is correct about seeing someone in the med. community who will listen to you and respect your plight.

[sfbaygirl]

I was having a problem with not being able to keep food down, still do on occasion. I don't have to much problem with liquids, so I will drink an Ensure, which gives all the vitamins and stuff. At least I felt like I was getting some nurishment. My doc blew me off after 5 days of heaving. Finally he gave me some Nexium, it wasn't covered, so I now am on aciphex, which I take all the time now and does the trick so far.

[jmjm530]

I might be 100% wrong on this, but I somehow recall reading that they were having major intestinal/stomach problems with nm283. If this is indeed the case, and you keep getting stonewalled by your med team, you might want to consult with a liver specialist outside of the study for a more objective point of view.

[Snookmiester]

I wasn't taking NM283, but I did experience the same sx's, and inability to eat and keep food down. I could put something in my mouth, and just chew, and chew, unable to swallow without gagging. It got very serious, and I lost over 25lbs in nearly a month time frame. Dr's where going to pull me off tx, and I was ordered in to the office for weekly checks.
This inability to eat started at about week 32?
I also had no luck with Zofran pills, and suppositories where just out of the question..Sorry, not going there! My wife suggested the injections, which helped greatly.
But the real culprit, turned out to be severe anxiety. I was Rx'd Xanax, which calmed me down and actually relaxes stomach muscles, and allowed me to get food down. I was also Rx'd Effexor Xr for anxiety, and to level the mind out. I only took 75mg a day.
But I honestly think the Xanax helped the most..

[DragonSlayer45]

I am really sorry to hear that you are having problems. I hope this too will pass for you. If I recall correctly they had you on a higher dose didn't they? I know they said that it causes GI problems in high doses. Are you still on the higher dose? I really hope you begin to feel better soon.

[Alady1620]

My dose was reduced to 400 mg some time ago.  I am worried that they will reduce my dose further or pull me off treatment if I go to the doctor about this.

Are you finished with your treatment?  Are you still clear?