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Avatar universal

Tx stopped

I'm Ilene, I have hep c, 1b, known for a year and a half but started tx Aug'08. I started to get a rash, small at first but  2 weeks ago I got real sick. My temp went up to 100.4 and I had vomiting & diarrhea. I went to hospital and was even sicker. Nothing would stay down for 4 days and the rash went to large boils. They keep me on i.v. They cut back on the ribavirin and gave me 3 once a day but wouldn't give me anything to eat with it. the next a.m. I was covered in boils. Still in a great deal of pain. They finally got me where I could keep something down. They stopped all hep TX. I'm still week and tired. Pain meds returned. They also gave me predizone it is helping the rash. I go to Doc on March 30 for them to decide what to do. They did blood test to see if the virus is back.I'll find out than. Dr did say he has heard of tx stopping at 28 weeks, but my viral load was over 3 mil. Any advise I could really use some support too. My family think I'm just felling sorry for myself and I should just tough it out. This was said to me the day after I got out of hospital. My daughter also said if I continue to"act" so sick she will keep my grandson away from me.
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Avatar universal
Thanks so much for the info. It makes me feel better. I wasn't undetectable until 28 weeks but I'm not sure. I was taking the benadryl but the hospital wouldn't give me that until after a week and they stop my tx.  Thanks so much for your support. I hope your tx is going welll and you are surrounded by people that care.
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Avatar universal
Thank you That means so much to me.
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233616 tn?1312787196
here's something else that happens to people on tx.

http://en.wikipedia.org/wiki/Cytokine_storm
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233616 tn?1312787196
gosh thats tough and awful....you are bound to be worried and depressed coming off of all this, A little understanding on the part of your daughter would go a long way.
Perhaps you need to give her something to read about depression in HCV people. My doc has pamphlets on it in his office. My kids were inpatient with me too...and wanted me to stop talking about my health....funny but when you have this disease you end up reading and thinking a lot about it, its only your life you are fight for after all.
anyway, I gave them stuff to read...but who knows which kids will be compassionate...some are just looking for excuses not to come visit...especially if a parent is sick or weak. I know my son got very concerned the time I collasped in the store isle with him there...but a week later he was chastising me for reading and thinking again. He is 30..and says if he had it..he woulbn't think about it at all...or read...
but then, he wouldn't learn, or be aware of things that might help his tx either.

what happened with your kidney function? Were you drinking enough water? Did they determine if it was the riba?  It could have been an allergic storm, which happened to me and I was covered with boils.  Had you eaten anything unusual or put on any new perfume or lotion?  If it was an aphalactic reaction to something else, you might be able to return to treating, so I would try to think really hard about what changed.
also, did they try adrenaline on you when you first came in, or a steroid, and how soon did the boils go down.  Just saying, it may have been the tx drugs, but not always. What you described could just as easily have been a food allergy/poisoning...I know...I've been there.

mb
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Avatar universal
I'm so sorry you had to be hospitalized!  When you speak of "boils" do you mean the welts of hives?  If so, benadryl might have taken care of that problem.  I have to take benadryl prior to every dose of riba or I get red puffy circles around my eyes and a hot rash on my skin.  Sounds like the hospital didn't know much about how to properly take riba since they didn't give you food to take with it.

When were you first determined to be undetectable?  4 weeks?  12 weeks?

To give you some hope, another internet friend of mine (from another Hep C site) was only able to take 9 weeks of treatment (out of 24) and her WBCs went crazy so her doctor pulled her off treatment. She had a negative VL at 6 months post treatment so her doc tells her she is as good as SVR!

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Avatar universal
I'm sorry to read about your troubles. I havde no words of advice but I am so sad about what your daughter said. I hope she realizes her foolishness and apologizes. There is never a reason to deprive a child of a grandmother's love.
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