Welcome, Guest. Please login or register.
April 18, 2024, 04:32:07 am

Login with username, password and session length


Members
  • Total Members: 6307
  • Latest: golfer
Stats
  • Total Posts: 55125
  • Total Topics: 4851
  • Online Today: 60
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 51
Total: 51

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Questioning no cirrhosis diagnosis...  (Read 18806 times)

0 Members and 1 Guest are viewing this topic.

Offline byebyeC

  • Member
  • Posts: 286
Questioning no cirrhosis diagnosis...
« on: September 19, 2015, 05:34:55 am »
Hi all :)

So... After reading through many of the posts here, I'm realizing how critical it is to know, for certain, whether or not any cirrhosis is present for tx to be a success.


Forgive the long winded nature of the following, please:

In October of 2014 I had an emergency gallbladder removal laparoscopically. While the surgeon was in there, he took a looksee at my liver and put in his notes that it was "ropey", then mentioned I had a previous diagnosis of cirrhosis, but I actually hadn't.

I gave his notes to my GE, and he said he'd run tests of his own. He ordered a long list of blood tests, liver panel, cbc, vl etc. and an abdominal ultrasound. Not the thumping noise kind I've read about here. Just a normal ultrasound. He diagnosed as no cirrhosis based on the results...

Fear is creeping in. If I actually have cirrhosis, I should be taking these meds for 24 weeks, not the 12 I'm prescribed. People are relapsing if they're not given the appropriate tx length...  :-[

I've told my GE, given him the surgeons notes. I pressed the nurse to give me more information or an explanation of how he came to his conclusion. Questioning her, or him through her, is apparently a very bad idea. She turned openly hostile and told me he knew what he was doing and didn't even pass on my concern to him. She basically just shut me down.

I'm almost at the 2 week mark. Getting that blood work done Monday. No time to jump this Dr.'s ship.

Any suggestions or info would be greatly appreciated! <3 to all y'all fighting this wee beastie :)
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Questioning no cirrhosis diagnosis...
« Reply #1 on: September 19, 2015, 07:19:43 am »
Hi, byebyeC --

FWIW, none of the ultrasounds I've had during the watch-and-wait or just before treatment detected cirrhosis, yet the FibroScan put me at F4. Some people call a FibroScan a type of ultrasound, but you wrote "normal ultrasound," so I assume you haven't had a FibroScan. If you haven't had a liver biopsy, was there a FibroSure or FibroSpect or FibroMAX or similar among the tests your GE ordered? If not, I wonder how your GE is sure there's no cirrhosis.

Not that any of the tests is 100% accurate. A biopsy might miss cirrhosis if it is present. Two tests may disagree (my FibroScan came back F4 cirrhosis, but my FibroSure came back only F2, and people on these forums have had the reverse happen). My hepatologist is going with the FibroScan because I've had Hep C for 44 years (and submitting the F4 to insurance certainly helped get me the Harvoni), but I question it because I don't have any cirrhosis symptoms and I do have abdominal fat, which someone's GE said can result in a too-high FibroScan score. (Fortunately, with Harvoni, the protocol for Tx-naive is the same with or without cirrhosis.)

Looking at your signature, you got an excellent, fast VL drop from the Vpak+Riba, and your ALT and AST weren't bad to begin with. But it looks like your Alt has risen? I hope others taking Vpak+Riba will be able to comment on whether that's usual.

You'll soon have 2-week lab results. You have a right to hard copy of those results and the earlier ones (the GE's office may charge for the photocopying). Would you want to contact AbbeVie (https://www.viekira.com/proceed-support) before or after you get those results, to see what they advise?

HTH,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #2 on: September 19, 2015, 08:00:05 am »
Hi gnatty,

Thank you for all of that info. I'm having a hard time getting the info on what tests were done. I'm thinking maybe I'll just ask the lab and imaging folks to send all of my results to me that they've done so far.

Are the fibrosure, fibrospect and fibromax blood tests?... I haven't heard that brought up or seen it on the few labs I do have on hand. I've just added an app that will send any further test results to my phone from now on. But, what they've already done is def pulling teeth from my GE :(

I've had hepc for 32 years and have that awesome belly fat as well... Guess I'm gonna have to go all Terminator on them to get the real deal, (immediately reconsiders! 'cause  I can't change docs midstream and I need my nurse and Dr. to not be adversarial) waaaa waaaa waaamp :(

Philly did send me a link about Viekirans w riba having up to 5x normal alt, not good long term, but acceptable short term. So, I'm good there :)

I am hoping because I'm having such a quick positive response that I'm kvetching for nothing (I am extraordinarily talented in this arena :) ) I SOOOO want this cure to stick and for all of the sx and bodily healing that will have to happen afterwards to not be for naught.  ::) Guess I'm gonna have to think positive and let go and let God...
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #3 on: September 19, 2015, 08:01:26 am »
By the by gnatty,

You are a literal treasure trove of information!!! Extreme mad props to you! You make take a bow as I salute you :D

<3 bye
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Questioning no cirrhosis diagnosis...
« Reply #4 on: September 19, 2015, 08:34:03 am »
Glad Philly filled in the gap. Yes, FibroSure, FibroSpect, and FibroMAX are blood tests. FibroMAX actually includes FibroTest and a few tests for other things. Some insurance companies consider all of them experimental, so if your GE didn't order one of them, that could be why.

Excellent that you can get labs sent to you. -wish there were a test for cirrhosis that is 100% accurate, but there isn't. All of us Hep C'ers have to live with uncertainties. Even the people who get the max treatment length aren't guaranteed a cure -- the odds just get a bit higher.*  "Let go and let God" is great, but I don't think God would be offended if you also contact AbbVie support for a second opinion.

Wishing you peace,
Nerdy Gnatty

* A local hepatologist gave a presentation a few nights ago in which he summarized the cure rate improvements with the various treatments over the years:
1991: 16%
1998: 35%
2001: 44%
2011: ~70%
2014: >95%
We have a lot to be thankful for! The current treatments are much easier to stomach, and new treatments expected in 2016, 2017, and 2018 will continue to shorten treatment times.
« Last Edit: September 19, 2015, 04:25:04 pm by gnatcatcher »
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #5 on: September 19, 2015, 09:12:17 am »
Thanks gnatty :)

You're absolutely right. He won't mind at all if I call Abbvie. That's an excellent idea! Blaming brain fog that I couldn't come up with that since I just suggested that to another user on another thread!!! Oy VAY meeee head :D

We are indeed blessed to be getting tx at this particular time :D
« Last Edit: September 19, 2015, 09:13:52 am by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Questioning no cirrhosis diagnosis...
« Reply #6 on: September 19, 2015, 04:11:18 pm »
* A local hepatologist gave a presentation a few nights ago in which he summarized the cure rate improvements with the various treatments over the years:
1991: 16%
1998: 35%
2001: 44%
2011: ~70%
2014: >95%

I LOVE seeing this list, Gnatty! It makes me feel great just to look at it. Thank you for posting it! All of us here have lived to see and reap the miracle! :)

kim
« Last Edit: September 19, 2015, 09:21:36 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Questioning no cirrhosis diagnosis...
« Reply #7 on: September 19, 2015, 09:19:30 pm »
BebeC,
Firstly is that you in your avatar?  You big gorgeous spunk? the only 2 ways if assuring cirrhosis or not is through fibroscan or biopsy. Fibroscan is the most widely used here. Going by your fantastic VL drop I'd say not, but do get as test if some sort at least for peace of mind. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #8 on: September 19, 2015, 09:59:31 pm »
BebeC,
Firstly is that you in your avatar?  You big gorgeous spunk? the only 2 ways if assuring cirrhosis or not is through fibroscan or biopsy. Fibroscan is the most widely used here. Going by your fantastic VL drop I'd say not, but do get as test if some sort at least for peace of mind. Cal :)

Hi Cal!

Aww shucks! Yes, that's me, wearing my "I turned 50 today Birthday Crown", lol. I wanted to do a pic from the get go, but we older folks and technology...  :P Took me finding DM's thread on how to do it (plus an entire night of riba speeds and anxiety kept me up all night, so what else would I do with all that time? teehee, !)

I am going to call Quest Labs and ask them to send me copies of all of my labs from the beginning. Then I don't have to cheese off my nurse :) They ran a boat load of labs at the start, so maybe a fibroscan, fibrosure or fibromas is why my GE is so certain in his dx )(?)

How're you doing today?...
« Last Edit: September 19, 2015, 10:01:36 pm by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline julu49

  • Member
  • Posts: 63
Re: Questioning no cirrhosis diagnosis...
« Reply #9 on: September 20, 2015, 01:39:43 am »
i Bye Bye,
I don't know if there is any "for sure" test for cirrhosis. I had the Fibro Scan but the young gals who did the test were struggling. They were confused  because they said my liver was up too high in my body. doesn't give you much confidence in the results. Has your doc seen that your eyes are yellow? What does he say about your labs going up instead of down. Don't let him bully you. I'm very well known by all my doctors as, well, challenging. Damn right. We have a right to know. Have you had your first test to tell you how you are doing yet? Are you nauseous?  I really hope you get some answers, it's your body. Actually I have to fight for everything in my healthcare setting. I know how it feels. Good luck

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #10 on: September 20, 2015, 02:34:46 am »
My guess is that your doctors have used a plethora of information available through your blood tests, physical examination, ultrasounds etc to give them an educated idea of what's going on. Markers they'd be looking at in your blood tests will include your PT/INR results, albumin, bilirubin, ALT/AST, GGT, Alk phos and there will prob be a few others. They'd be able to see thinks like portal hypertension in your abdo u/s which is an indicator of cirrhosis.

Of course there are other tests they can run like a fibroscan or fibrosure blood test or a biopsy, and I suppose if you are concerned you could ask for them.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Questioning no cirrhosis diagnosis...
« Reply #11 on: September 20, 2015, 02:37:40 am »
Hi Byebyec,
You don't look fifty young lady! Imagine how good your gonna look when you give Hep C the arse?
I think Phily had the same kind of reaction with the bilirubin and the yellow eyes. You need to tell your GP or specialist though. A fibroscan is a bit like an ultrasound. They run a thingy across the liver to test for stiffness. The machine then calculates a number and from that you can tell if you have cirrhosis or not.  Nicer than a biopsy. I've had 2 of those as well, Ouch not pleasant. I haven't heard of the blood tests before so can't help you there. If your Specialist said no then he would know. If it was your GP, then don't know.
I get a copy of every single test they do. They are cc'd to my GP and she prints them off for me. Julu is right you need to kick and gouge for everything you need. Don't be meek, this is it doll and you need to have it right. Sorry to hear about the speeds and anxiety. I had them too around your time. I still get the speeds which is handy for doing jobs, but anxiety comes and goes. That's when I use valium if it gets to out of control. Revolting feeling.
I'm fine, still weak and a little shaky. Awful blurred vision, so excuse any mistakes in typing. That has come and gone twice so far. I am on Day 31. Mid week 5. I find it's ok if I don't have stress but that's impossible. There's always stress of some sort in life. ;D Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #12 on: September 20, 2015, 02:38:42 am »
Btw I'm not sure how they measure bilirubin over there, but over here a normal range is 3-18. When I was two weeks in my bilirubin was 152. It's the drugs. They hit some of us hard in the first month, but things settle down from there. A friend over here did treatment with an ALT reading of 300 and successfully completed it and cleared.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline julu49

  • Member
  • Posts: 63
Re: Questioning no cirrhosis diagnosis...
« Reply #13 on: September 20, 2015, 02:45:23 am »
Happy Birthday, Bye! You are NOT old. Just beginning the best years of your life.
Be strong.
julu

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Questioning no cirrhosis diagnosis...
« Reply #14 on: September 20, 2015, 03:12:55 am »
Philly from Down Under, different labs Up Over here in the U.S. may have different reference ranges for bilirubin. Mine give a reference range (normal range) of 0.1 - 1.2 for Total Bilirubin and 0.0 - 0.3 for Direct Bilirubin.

byebyeC, here's a good explanation of bilirubin tests: http://www.mayoclinic.org/tests-procedures/bilirubin/basics/why-its-done/prc-20019986  So, as Cal suggests, your yellow eyes may be because of high bilirubin caused by the drugs.

Philly, my ALT hit a high of 299 (reference range 8-22) in February of 2014, yet I've had no trouble clearing when tested 4 weeks into treatment. These drugs are truly amazing!
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Questioning no cirrhosis diagnosis...
« Reply #15 on: September 20, 2015, 03:21:30 am »
Gnatcatcher,
I agree these drugs are truly amazing. I still keep thinking I should be sicker or have more sxs and what's with just taking a few pills????? Thank goodness for all orals! ;) ;) ;) Cal
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #16 on: September 20, 2015, 04:05:50 am »
i Bye Bye,
I don't know if there is any "for sure" test for cirrhosis. I had the Fibro Scan but the young gals who did the test were struggling. They were confused  because they said my liver was up too high in my body. doesn't give you much confidence in the results. Has your doc seen that your eyes are yellow? What does he say about your labs going up instead of down. Don't let him bully you. I'm very well known by all my doctors as, well, challenging. Damn right. We have a right to know. Have you had your first test to tell you how you are doing yet? Are you nauseous?  I really hope you get some answers, it's your body. Actually I have to fight for everything in my healthcare setting. I know how it feels. Good luck

Hi Julu! Nice to hear from ya :D

Good to know. Maybe I don't need to flip out over everything tx related, lol. That's a very weird thing for the scan people to say. How high could your liver be???

I am generally a pit bull with docs. This feels different to me. What happens to me mid tx if I make her mad by asking a question on the wrong day?... I've never felt so vulnerable and this lady is either going through something awful or ...  :/

Nauseous every day about 3 hours after taking meds, but phenergan helps if I remember to take it about 2 hours after meds. Getting pretty good at remembering haha :D My GP did see the yellow. That's why I got the new numbers in my signature. It's not too bad, but bili is going up. Apparently, alt going up to 5x above normal is "normal" with VP and riba. I got reading through Philly's blog and she had this happen early in tx and through it as well. I guess we're just lucky gals  ::)

2 Weeks of tx labs on Monday, yay!

Thanks for checkin on me Julu!

How's tx treating you?... Sides getting better or the same? New numbers for you?...

And, thank you for the not old comment :) Just feeling ancient right now, tx butt kicking... You are right though. Definitely the best years are to come! Good to know we'll get to have them, God willing, now that we're getting tx! Cheers to that!
« Last Edit: September 20, 2015, 11:49:00 pm by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #17 on: September 20, 2015, 04:26:02 am »
Hi Byebyec,
You don't look fifty young lady! Imagine how good your gonna look when you give Hep C the arse?
I think Phily had the same kind of reaction with the bilirubin and the yellow eyes. You need to tell your GP or specialist though. A fibroscan is a bit like an ultrasound. They run a thingy across the liver to test for stiffness. The machine then calculates a number and from that you can tell if you have cirrhosis or not.  Nicer than a biopsy. I've had 2 of those as well, Ouch not pleasant. I haven't heard of the blood tests before so can't help you there. If your Specialist said no then he would know. If it was your GP, then don't know.
I get a copy of every single test they do. They are cc'd to my GP and she prints them off for me. Julu is right you need to kick and gouge for everything you need. Don't be meek, this is it doll and you need to have it right. Sorry to hear about the speeds and anxiety. I had them too around your time. I still get the speeds which is handy for doing jobs, but anxiety comes and goes. That's when I use valium if it gets to out of control. Revolting feeling.
I'm fine, still weak and a little shaky. Awful blurred vision, so excuse any mistakes in typing. That has come and gone twice so far. I am on Day 31. Mid week 5. I find it's ok if I don't have stress but that's impossible. There's always stress of some sort in life. ;D Cal

Thank you Cal :)

It's all smoke and mirrors ;)  I'm putting that crown back on for a month when I get SVR!

You're right about Philly. I read that on her blog too. That really helped me to be fairly unconcerned about it to be honest. It's light yellow. They looked at it, ran labs, it's all ok, if they go darker, I'll head back in. Going to Dr.'s and waiting, it what we hep warriors do best! (heard that from a gal named Cal, haha!) Might have to hit up my GP for the anxiety meds if this keeps up. Not used to anxiety at all, very very uncomfortable. Stress yes, anxiety is new.  :P

It was my specialist that said no cirrhosis. It's just weird that my surgeon, who actually laid eyeballs on my liver said ropey, specialist sees that in surgeons notes, then says nope, my tests say no...

I've got an app now to get further lab results sent to my iPhone. I'll just have to ask for the previous ones.

Funny how the definition of "fine" has changed for us huh? Shaky, tired, weak and blurred vision is fine these days :) So glad we have each other to know the real deal  8)
« Last Edit: September 20, 2015, 05:15:36 am by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #18 on: September 20, 2015, 04:39:49 am »
Btw I'm not sure how they measure bilirubin over there, but over here a normal range is 3-18. When I was two weeks in my bilirubin was 152. It's the drugs. They hit some of us hard in the first month, but things settle down from there. A friend over here did treatment with an ALT reading of 300 and successfully completed it and cleared.

Hi Philly,

Normal here is 0.3 to 1.9. So, I'm nowhere near the range above that you were, yet. Wow, 300! Not "good", but good to hear. Knowing you've had the same issues is really helping me stay calm about this stuff. So, thank you.

GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #19 on: September 20, 2015, 04:43:58 am »
Philly from Down Under, different labs Up Over here in the U.S. may have different reference ranges for bilirubin. Mine give a reference range (normal range) of 0.1 - 1.2 for Total Bilirubin and 0.0 - 0.3 for Direct Bilirubin.

byebyeC, here's a good explanation of bilirubin tests: http://www.mayoclinic.org/tests-procedures/bilirubin/basics/why-its-done/prc-20019986  So, as Cal suggests, your yellow eyes may be because of high bilirubin caused by the drugs.

Philly, my ALT hit a high of 299 (reference range 8-22) in February of 2014, yet I've had no trouble clearing when tested 4 weeks into treatment. These drugs are truly amazing!

Thank you Gnatty,

I stayed cool about the yellow eyes because I'd read Philly's blog, thank Heaven. The alt thing did freak me for a bit. Wow, 299. Good to know it clears :)
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #20 on: September 20, 2015, 06:03:19 am »
They may talk to you about reducing your riba dosage. It's a balancing act. My specialist ran a ribavirin level test and it showed i was over-absorbing it and had very high levels I my system. He felt comfortable about reducing it. I still cleared, although I am still waiting to see if I hit SVR12.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: Questioning no cirrhosis diagnosis...
« Reply #21 on: September 20, 2015, 08:51:44 pm »
Phily,
And we end, up waiting again. Waiting waiting.....Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #22 on: September 20, 2015, 08:56:01 pm »
They may talk to you about reducing your riba dosage. It's a balancing act. My specialist ran a ribavirin level test and it showed i was over-absorbing it and had very high levels I my system. He felt comfortable about reducing it. I still cleared, although I am still waiting to see if I hit SVR12.

Hi Philly :)

Everytime I see your name on a thread I start hearing Elton John in my head... Phil-a-del-phia Free-dom! I luh-huh-huv you. Yes I do! :) Just wanted to share 8) I find it very fitting since you're getting FREE!

Going in for 2 week labs tomorrow. Yay!

I am taking 3 ribas in the am and 3 in the pm... Still waiting on a call back after giving my specialist my last weeks labs... She did say they might do "some things differently". 

GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #23 on: September 20, 2015, 09:01:00 pm »
Philadelphia is actually the name of my horse. Philadelphia Story after the Katherine Hepburn character.



and before you ask, that's my daughter, not me.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #24 on: September 20, 2015, 09:02:49 pm »
Or Hover Pony as we like to call her.

CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #25 on: September 20, 2015, 09:08:29 pm »
Those are AWESOME Philly!!!

Thank you for sharing! Looks like your daughter is quite the sport! :D
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline julu49

  • Member
  • Posts: 63
Re: Questioning no cirrhosis diagnosis...
« Reply #26 on: September 20, 2015, 10:29:35 pm »
Hi Bye,
I sure hope you don't think I said anything about flipping out over every little thing. I did NOT. Never would. After all, I have them too. Can you go to a different doctor? Request a new one? Yours shouldn't be treating anyone that badly. I had a psych do that to me. Once. I called member services, reported him and he was gone not only that I had the top guy as my psych. Feels kind of weird though, he works mainly with kids who have big troubles. I haven't seen him in years, but really you don't have to put up with her abuse. It is abuse. If your eyes are yellow and your billi is high it could be something else, you gallbladder, pancreas, a stone that's stuck, it's not right. Go forth and find out what the hell is going on with you. Find your inner pit bull and let it shake that doc around a little. I worry about you.
Thanks for asking about my sides, much better, they crop up here and there but are better. What is fibrosure?

Offline julu49

  • Member
  • Posts: 63
Re: Questioning no cirrhosis diagnosis...
« Reply #27 on: September 20, 2015, 10:31:49 pm »
Hi Phil,
Wow! What a beautiful horse and rider. I'll bet you are so proud.
julu

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #28 on: September 20, 2015, 11:42:27 pm »
Hi Bye,
I sure hope you don't think I said anything about flipping out over every little thing. I did NOT. Never would. After all, I have them too. Can you go to a different doctor? Request a new one? Yours shouldn't be treating anyone that badly. I had a psych do that to me. Once. I called member services, reported him and he was gone not only that I had the top guy as my psych. Feels kind of weird though, he works mainly with kids who have big troubles. I haven't seen him in years, but really you don't have to put up with her abuse. It is abuse. If your eyes are yellow and your billi is high it could be something else, you gallbladder, pancreas, a stone that's stuck, it's not right. Go forth and find out what the hell is going on with you. Find your inner pit bull and let it shake that doc around a little. I worry about you.
Thanks for asking about my sides, much better, they crop up here and there but are better. What is fibrosure?

Not at all Julu!!! Please don't think that. Poking fun at myself more than anything.

I know I'm taking a semi-bad/poor position and being a giant wimpy mcwimpy pants :o  I've never felt like this. If I didn't like a doc, I'd just leave and find a better fit. I'm actually scared to tick this nurse off. She's cut me off before on important questions. If I wasn't mid tx, in the fight of my life, I throw them over after giving them a piece of my mind then report them to the medical board. I just need them to stay on my side for ten more weeks... Bad thing about living in Alaska, there're few specialists to cover the population here. I had to wait 90 days just to get an appointment with this guy. Switching just can't happen here, even though I have great insurance. I'm in a box, till EOT... Thank you so much for sticking up for me :) I really appreciate it and I know we're in this together. That helps more than you know!

No gallbladder anymore, but I'm going in for 2 week labs tomorrow. We'll see how those numbers compare. I shall update post haste :) Thank you of worrying about me, muah!

Very glad you're getting used to your sides and they're getting better. Yay!

I just found out from Gnatty and Philly, that "fibrosure, fibromax and another fibro something or other" are all blood tests that help along with other info to determine whether or not someone has cirrhosis...

We'll just keep soldiering on together!

<3 bye
« Last Edit: September 20, 2015, 11:50:20 pm by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #29 on: September 20, 2015, 11:58:48 pm »
 8)
« Last Edit: September 21, 2015, 12:02:05 am by byebyeC »
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #30 on: September 21, 2015, 12:07:06 am »
It's worth noting that my specialist and NP also ran a battery of additional blood tests and did an abdominal u/s to check nothing else was going down with my Bili levels. It is a well-documented side effect but they wanted to make sure there were no underlying issues.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline byebyeC

  • Member
  • Posts: 286
Re: Questioning no cirrhosis diagnosis...
« Reply #31 on: September 21, 2015, 12:24:25 am »
Ok, Thank you Philly,

That gives me the info I'll need when I talk to me GE's nurse tomorrow, before me 2 week labs are run. Seems like I'm having the same things happen that happened to you, but that could be untrue... It does make me feel better to know you were fine with the same issues though :)

Sunshine and rainbows to all you warriors!
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Questioning no cirrhosis diagnosis...
« Reply #32 on: September 21, 2015, 12:27:01 am »
If I can find the other tests they ran I'll post them here.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

 


© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.