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Hep C Discussion Forum -> New Members Area -> Need Opinions Concerning Gastro Dr Please
Post Info TOPIC: Need Opinions Concerning Gastro Dr Please
skewedButNotBroken


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Need Opinions Concerning Gastro Dr Please
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I think the best doctors are the ones who know how to work the system, however, they are not necessarily the most knowledgeable about disease. This is sad, but is usually true.



-- Edited by skewedButNotBroken on Thursday 1st of January 2015 11:20:39 PM

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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Brownie


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Xifaxan 550 mg (Rifaximin) | Overt Hepatic Encephalopathy Treatment

http://www.xifaxan550.com/

http://www.rxlist.com/xifaxan-drug.htm

http://www.nejm.org/doi/full/10.1056/NEJMoa0907893

-- Edited by Brownie on Thursday 1st of January 2015 08:33:03 PM



-- Edited by Brownie on Thursday 1st of January 2015 08:39:06 PM



-- Edited by Brownie on Thursday 1st of January 2015 08:45:34 PM

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RudiRoo


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Happy New Year all,

 

I think the drug might be Rifaximin. I see this drug cannot be used during S/O therapy as it reduces efficacy, but don't know about Harvoni. It is very expensive.

Here's a bit of info from NEJM:

 

RESULTS

Rifaximin significantly reduced the risk of an episode of hepatic encephalopathy, as compared with placebo, over a 6-month period (hazard ratio with rifaximin, 0.42; 95% confidence interval [CI], 0.28 to 0.64; P<0.001). A breakthrough episode of hepatic encephalopathy occurred in 22.1% of patients in the rifaximin group, as compared with 45.9% of patients in the placebo group. A total of 13.6% of the patients in the rifaximin group had a hospitalization involving hepatic encephalopathy, as compared with 22.6% of patients in the placebo group, for a hazard ratio of 0.50 (95% CI, 0.29 to 0.87; P=0.01). More than 90% of patients received concomitant lactulose therapy. The incidence of adverse events reported during the study was similar in the two groups, as was the incidence of serious adverse events.



-- Edited by RudiRoo on Thursday 1st of January 2015 07:46:56 PM

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Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
Dzdayscomin


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Yes I'd be curious as well, because all I am aware for this is lactulose to remove the ammonia which is the root cause.

 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
pl1952


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If there's an actual prescription for this brain fog that I have been complaining about for years I'm gonna be mighty pissed at my Dr... lol   I wanna know too!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Greg D


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I too would be interested in learning the name of that med for brain fog. Please / thanks.



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60 yo (2013), genotype 2b, started 28 week tx Sept.14, 2013. Triple Therapy (ribavirin, victrelis, peginterferon), VL 235k prior to tx, UND right through. EOT March 29, 2014. EOT24 Sept. 15, 2014 and EOT + ONE YEAR April 1, 2015 UND.... SVR!

 
Bills


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Brian1412 wrote:

When I talked to the 2 Drs who are reviewing my Gastro   and to others, they were surprised when I told them some version of this "brain fog" they were surprised  my" Dr " had  not asked or mentioned it. "  ammonia build up."


 Hi Brian

Do you know what that med was ?  I had discussed brain fog  with my doc many times  I have a scrip for an antibiotic at home however I didn't use it  I was given it just before Harvoni so I didn't want to mix. I'll check in later when I get home and get the name from my script

BillS



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Brian1412


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When I talked to the 2 Drs who are reviewing my Gastro   and to others, they were surprised when I told them some version of this "brain fog" they were surprised  my" Dr " had  not asked or mentioned it. "  ammonia build up."

 

 

 

They gave me a med and poof, it was gone.   It is astounding to me how many Drs, particularly  Gastro's who "treat"  Hep-c and liver diseases, that have no idea of this fog.   Harvoni people asked me right off the bat.  The Liver Foundation  also mentioned it right off the bat.

 

This is why advocate is important . I am starting to wonder if my grant Dr has ever treated a case of Hep C

Also, Harvoni people  also said they would like to know liver damage  degree, I think they said for  dosage or something like that, but they said it would NOT stop treatment because of it .

When I had testicular cancer, the first Dr wanted to take out part of the testi. That was wrong on so many levels.  He " thought that is what one did, which was "nuts" ..

I am seeing a lot of like minded stuff from the Gastro Groups.   Let the people inform you here, and make sure when you walk into the Drs, you ask her the questions and make  sure  they answer them. If they don't or won't, something is seriously wrong. Always a dead giveaway.

Hang in there



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Tig


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Hello Rose,

Welcome to the forum! I'm sorry to hear about your situation, but am glad you're here and hope we can calm some of your concerns.

The advice given to you by Mallani is sound and I echo his suggestions. To provide an informed opinion, we need more information. That doesn't mean we can't help though. It sounds like you are presenting several symptoms of HCV from your description. HCV can manifest itself in so many ways and we have discussed it several times here. Search HCV manifestations in our search function for more info. Aside from that I think that you need to start by documenting your symptoms and the problems caused as far back as you can remember. If you can get copies of your lab tests, include them in your file. The idea is to have as much supporting evidence as you can find before you sit down with your doctor. I would request a sit down with the doctor, not just his assistant. You are your own best advocate and nobody knows how you feel more than you do. Present your evidence, the description of your aches, pains, how it has affected your concentration and your ability to work, all count when they make their consideration and report. The more you can provide, the more powerful your case becomes. If your first specialist won't help you, find another that will listen and take all your documentation with you. Ask your insurance company for a referral and see if there is a local HCV support group that might provide you with some leads. If you do get turned down for treatment, you take all of your gathered documentation and you request an appeal from insurance and/or present it to another doctor. Don't take no for an answer! Many here have been working on this for quite awhile, so you're among friends in a similar situation. We network ideas and support each other in the process.

So keep your spirits up and keep at it. Don't drive yourself nuts pursuing it, but don't quit. Gather your documentation and stay on your healthcare team. When they know you're serious, they will know you're not going away! If you have any additional information on your case, please share it here and we will do our best to help with support and informed opinions. Just remember you're among friends and many of us have been where you are or know several who have. There is strength in numbers!! Hang in there Elizabeth....

Tig          



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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mallani


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Hi and welcome Rose.

I removed your duplicate post.

Sorry to hear about your symptoms. Some have symptoms from HepC, some don't.

Do you know your Genotype and Viral Load? Treatment options may vary.

If you've had HepC for a long time, blood tests don't always tell the full story. For assessment of liver damage you need a liver biopsy or Fibroscan. With your symptoms, you should insist on this.

The assistant may have been referring to treatment with Harvoni (for Genotype 1). Access to this can be difficult depending on your Insurance company. If you are Geno type 2 or 3, treatments are available.

Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Rose 57


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Hello,

 

     I have my first visit with my new Gastro Dr tomorrow morning.   The physician's assistant who ordered all my tests and blood work has informed me that she does not believe that I will be afforded treatment because my tests show no liver damage and it is not enlarged as she thought when she examined me.  In fact all of my blood work and tests came back "stellar", in her words.  She explained that available treatments are not given to people until they show signs of liver damage.  She said in effect, that I am not sick enough to receive treatment so I should not get my hopes up about it.  

 

     I did not realize until recently that I have been symptomatic for a long time.  I have been a croupier for 35+ years so I used to dealing very high limit games where hundreds of thousands of dollars were in play.  The last job I had (WSOP 2011) I was often sent home because (much to their surprise)  I could no longer keep control of my game.  I now attribute my "deer in the headlights" appearance to the symptom known as brain fog.  It has progressively gotten much worse to where I cannot leave my house without getting lost in a city I have resided in for 40 years, and often my short term memory is non existent.  I also am so severely affected by constant fatigue, terribly sore muscles, extreme weight loss that combined with the brain fog, I find myself unable to work.   

 

     Here is my question to anyone who will offer their opinion.  What course of action shall I take if my GP's assistant is correct and I am denied treatment by the Gastro Dr because I am not sick enough on paper and my being so severely affected by symptoms is not taken into account?  Do I have a leg to stand on here?  Has anyone reading this post been denied treatment for this reason?  Please advise me.  I do not think I will be able to keep my composure if this is the case.  Is it even lawful for me to be denied treatment if I am willing and able (because I am SO HEALTHY) to undergo it?  Thank you for any help or direction I might be provided with as a result of this post.  Thank you sincerely Elizabeth, for helping me write this post.

 

May God shine a light on all of you during the holiday season,

Rose 57



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