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Author Topic: Feelings of malaise and bilirubin spike on S/O  (Read 13433 times)

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Offline amocuatli

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  • Posts: 43
Feelings of malaise and bilirubin spike on S/O
« on: November 04, 2014, 04:32:23 am »
After reading about the deaths in Japan, and checking my labs I realize that I too had a bilirubin spike (it went from normal to a high of 1.6) and I have had the malaise they talk about. I just recently had to have a d&c procedure due to unexplained bleeding as well. My bilirubin has not been monitored since any ideas? Has anyone else experienced these side affects?

Offline rainbowray

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  • Gen 1B
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #1 on: November 04, 2014, 11:45:14 am »
Hi amoucuatli,

Honestly, if I were you I would keep on top of this. If your not scheduled for lab work soon press for it. If not possible then get your own ordered and pay for it.

http://www.healthonelabs.com/

Perfectly legal. I would do it once a week, and if the bilirubin stays high it is the warning signal they say that can cause the big problems. The bleeding is not cool either. Alt and/or Ast may rise too. Check the info from Japan and other sources that is released. Lucinda's blog has some info resources.  Sometimes waiting on scheduled appointments with our Doctors is not the wisest decision.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #2 on: November 04, 2014, 04:00:08 pm »
amo - I suggest you call your doc and express your concerns. Although I am a proponent of being in charge of your medical records, it can be dangerous or frightening to read your own if you don't know what you are doing. I have seen many people lose sleep over an abnormal lab only to find out that abnormal doesn't mean clinically significant. I've also seen the opposite - patients who slipped through the cracks because they assumed their docs were paying attention. I think it is up to us to be sure our docs are paying attention. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline amocuatli

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  • Posts: 43
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #3 on: November 04, 2014, 07:40:05 pm »
I called my doctor today and asked them to call me but got no call back I'll call back tomorrow :o

Offline Mike

  • Member
  • Posts: 999
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #4 on: November 04, 2014, 08:29:25 pm »
Hi Amo,

Lucinda and Rainbowray are right. Make sure you stay on top off this. Write down a list of questions to ask your doctor. Ask him/her to explain things you're not clear about.

Using phrases like, "Can you tell me more about that...", "I was wondering..." and "Help me understand..." can be really beneficial when seeking more information.

Keep us in the loop.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

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  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #5 on: November 10, 2014, 10:52:30 pm »
Hi Amoucuatli,

I am waiting for full results from week 4 but I can tell you that for me at week two my Bili went from .6 to 1.1 however my AST and ALT dropped to about half of what they were. Please don't wait to see your doctor, I am now going weekly because of other challenges due to the Cirrhosis but my doctor is keeping a really close eye on me because I am having such a hard time and I asked for it.

All of the people on the forum are correct about Dr Questions and notes. I get in the office, we start reviewing what's going on, get on a topic and I forget all about what I wanted to ask him about so now I have a Notepad in my iPhone that's full of questions for the doctor so that if a question comes up during the week I can ask him next time I visit. I also put the answers to the questions in there when I get home so that I am reiterating the discussion in my own head.

We are all individuals and will all react differently and you need to do what feels right for you but just know it's ok to see the doctor more frequently when you need to.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline amocuatli

  • Member
  • Posts: 43
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #6 on: November 11, 2014, 03:08:38 am »
Thanks Mike and Mel
I got the bleeding issue taken care of, I have decided to wait until the 17 to do my blood. I like your suggestion Mike...maybe a kinder and gentler approach is why this needs--doctors are people too? Mel my Dr gets defensive when I ask too many questions.
They definitely got the bleeding issue wrong and my gynecologist told me constipation is one of the first signs of uterine, ovarian cancer and that chronic constipation should be looked into, not told to take remedies for extended periods.
That is the exact question I asked "why would I be having constipation and back pain since February when I never had any issues before?"the PA and she just blew me off. That really makes me angry. But you are right Mike in this situation I am not getting good care and my attitude doesn't make it better and doesn't help me or any of the people this dr will see in the future.
On a lighter note I see the FDA approved Olysio SovAldi

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #7 on: November 11, 2014, 05:46:24 am »
Amocuatli,

Any options for you to possibly change your doctor? Is there perhaps someone else in the same practice? Some times we just don't have a good connection with the doctor and it makes it way harder for us to deal. In this situation considering what we are all going through it is important for us to be able to have open conversations with our physician.

Hopefully the suggestion about asking in a very non confrontational way will help.

FYI: I've been fighting constipation(turned out to be medication change) and lower back pain myself for a while aka a few months before S/O and before I knew I had HEP C or cirrhosis. Personally I've have every test in the book including an MRI and ultrasound and they couldn't come up with any real reason for me. Please pursue getting checked for this because if something inside doesn't feel right then fight for an answer.

~MEL~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline melody

  • Member
  • Posts: 5
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #8 on: November 11, 2014, 03:22:52 pm »
I have seen people bleed horribly after taking this medicine from their mouth and gums, with no explanation.  Be careful.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #9 on: November 11, 2014, 07:17:53 pm »
Hi Melody,
That has not been reported as a side effect of the medication - the kind of bleeding you are describing is more likely from cirrhosis, which is why people are often eligible for treatment in the first place.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #10 on: November 11, 2014, 07:38:58 pm »
I am currently entering my 6th month of treatment, I have stage 3 fibrosis, and I was bleeding a lot from my gums before starting treatment. After being undetected before week 4, and about a month after that the bleeding subsided, now it hardly exists.
And the blood in my nose mucous is almost gone too.

Offline hlthy8

  • Member
  • Posts: 12
  • Eat Well
Re: Feelings of malaise and bilirubin spike on S/O
« Reply #11 on: November 21, 2014, 06:38:47 pm »
The three deaths in Japan were very interesting because of the quick escalation of rise in bilirubin and hence liver failure in matter of two to three weeks.  the protocol says that Simeprivir - which is Olysio - is processed differently in the far east nationalities - they say it can accumulate at a rapid rate. When the patient's started to have rising levels of bili it really shot up fast
you can read the patient report at

www.pmda.go.jp/english/service/pdf/letter/141024-sovriad.pdf



 


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