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Author Topic: Just Diagnosed  (Read 8237 times)

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Offline darlene

  • Member
  • Posts: 4
Just Diagnosed
« on: November 14, 2017, 12:09:07 pm »
Hi...I was recently diagnosed with Hep C. Needless to say, i was shock.  What followed within the next few weeks was....how did i get this? Who do I tell?  What do I do?  I was also, well, embarrassed.  Since I never had a blood transfusion I can only say that I must have gotten it from IV drug use.  I am being generous in saying I might have "shot-up" less than 5 times.  Could this happen?  Now I know, of course it can.  It was over 40 years ago....stupid teen, stupid choices.  Anyway, I have had two blood tests both of which confirmed I have it.  The doctor is going to start me on Mavyret once my insurance approves it (I am still waiting after almost two months).  Is it normal to have to wait this long?  Also, he sent me the results but of course I do not understand all the gibberish.  Maybe you guys can help with this.  It states that I do not have an immunity to Hep B virus. Result was <5, Flag L, Reference > OR=10.  The next one was Hep B surface antigen with Reflex Confirmation (498).  Result Non-Reactive, Reference Non-Reactive.  Hep B Core Antibody total (501)..Hep B cpre AB total...Result Reactive, Flag H, Reference Non-reactive. Hapatitis A AB total, result non-reactive, Reference non-reactive.  Liver Fibrosis, FIBRO-ACTI Pan (92688)...Test name: Alpha-2-Macroglobulin Result 295 mg/dL Flag H, Reference 106-279. Haptoglobin 87 mg/dL Reference 43-212. Apolipoprotein A1 183 mg dL Reference 101-198. Bilirubin, Total 0.5 mg/dL Reference 0.2-1.2. GGT 17 U/L Reference 6-29. ALT 21 U/L Reference 6-29. Fibrosis score 0.30, Fibrosis stage F1....Interpretation: minimal fibrosis. ActiTest Score Metavir score 0.00-0.17 AO no activity.  Hepatitis C viral RNA with reflex. HCV Genoptype LIPA (11348).HCV mRNA Quantiative Real Time. Result 10544922 IU/mL Flag H. Reference <15. HCV RNA Quantiative Real Time PCR Log IU/MI..Result 7.02 Flag H Reference <1.18.  HCV Genotype, LIPA 2B.  Prothrombin Time with INR (8847). Prothrombin Time Result 11.3 seconds  Reference 9.6-12.4. Inter Norm Ratio Result 1.0 Flag L. 2.0-3.5.  Sorry, I know this is a lot but I am totally confused by all this.  Some of it I do understand.  My understanding is that I have Hep C with minimal fibrosis and am not Immune to Hep B so will need to get vacinated for Hep B.  Is this correct?  Thanks to everyone who will take the time to get me through this next journey in my life.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just Diagnosed
« Reply #1 on: November 14, 2017, 06:14:39 pm »
. . . Who do I tell?  . . .  The doctor is going to start me on Mavyret once my insurance approves it (I am still waiting after almost two months). Is it normal to have to wait this long? . . . My understanding is that I have Hep C with minimal fibrosis and am not Immune to Hep B so will need to get vacinated for Hep B.  Is this correct? . . .

Welcome, Darlene. To start with your questions, you don't have to tell anyone you're not super-comfortable telling (unfortunately, some people still stigmatize those with Hep C).

Yes, insurance companies can take a long time. They used to deny people who weren't very sick (i.e., with much more fibrosis), but most insurance companies have come around; yours may have been waiting for all those test results. Your liver is in excellent shape considering how long ago you shot up. (Yes, shooting up once with a contaminated needle can, alas, be enough.) Your various liver enzyme results look very good. Only your viral load (>10 million IU/mL, also written as a logarithm of 7.02) stands out, but the Mavyret should take care of that in short order once you have the pills in hand.

Your understanding about minimal fibrosis and needing to get vaccinated for Hep B is correct.

Best wishes,
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 darlene

  • Member
  • Posts: 4
Re: Just Diagnosed
« Reply #2 on: November 14, 2017, 07:01:57 pm »
Thanks so much for answering.  After reading this forum I have been impressed how nice everyone is and also very understanding.  Some people mentioned getting a ultrasound or scan but my doctor did not even suggest this.  I have come to accept the fact that I have Hep C and just want to do everything I can to get rid of it once and for all.  I appreciate any feedback I can get.  Thanks.

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Just Diagnosed
« Reply #3 on: November 14, 2017, 08:38:38 pm »
Thanks so much for answering.  After reading this forum I have been impressed how nice everyone is and also very understanding.  Some people mentioned getting a ultrasound or scan but my doctor did not even suggest this.  I have come to accept the fact that I have Hep C and just want to do everything I can to get rid of it once and for all.  I appreciate any feedback I can get.  Thanks.

Welcome Darlene! Sounds like you have a pro-active doctor who is eager to start you on treatment. That will help you with insurance company, should they balk. Some people do get a fibroscan (a type of ultrasound that measures liver stiffness). It is to determine the level of liver fibrosis. But your fibrosis has already been staged with a blood test . So that's why your doctor is not setting you up for a scan.

Good luck & keep us posted. :)
kim
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 Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Just Diagnosed
« Reply #4 on: November 14, 2017, 08:45:37 pm »
Hi darlene and welcome,

Just to add a bit more to Gnatty’s post:

Looking at your Hep B tests against the antibody/antigen charts does seem to indicate that you have not had exposure to it and the same with Hep A, so vaccination against these is usually advisable. But you should discuss the test results with your doctor and be guided by their advice before proceeding. The same with a ultrasound scan.

While your viral load seems fairly high at the moment there is no known correlation between that and liver damage, fibrosis and cure rates with the DAAs now being used for treatment* and it can vary a lot over time so don’t let that worry you.

You are genotype 2b if you hadn’t worked that out. This GT usually has excellent cure rates these days with the appropriate meds and Mavyret is one of the newest and best for all genotypes with excellent results.

Insurance approvals can take time but as Gnatty says most have reduced their restrictions these days. If yours does reject your initial application then you/your Dr can appeal the decision. If so post on here and someone will be able to guide you through what to do.

* the one exception for Viral Load is genotype 1a where VL of less than 2M is sometimes used as an indicator for shorter Tx times with Harvoni.
« Last Edit: November 14, 2017, 08:52:03 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just Diagnosed
« Reply #5 on: November 14, 2017, 09:03:32 pm »
. . . Some people mentioned getting a ultrasound or scan but my doctor did not even suggest this. . . .

Perhaps the reason your doctor did not suggest this is that your fibrosis level is only F1; someone with an F3 or F4 fibrosis level typically gets an ordinary* ultrasound periodically because of the risk of liver cancer when there is a lot of fibrosis (with F4 meaning cirrhosis).

Accepting that you have Hep C is a huge step forward. Soon, you'll be putting all of this behind you.

Gnatty

*as opposed to the special type of ultrasound called a FibroScan which, as Kim explained, is a different method of assessing fibrosis level than the method you had.

By the way, DAA stands for "Direct Acting Antiviral" (any of the newer, really effective Hep C medicines).
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Just Diagnosed
« Reply #6 on: November 15, 2017, 12:53:57 am »
Hi Darlene and welcome

As far as your viral load results:

HCV mRNA Quantiative Real Time. Result 10544922 IU/mL Flag H. Reference <15. HCV RNA Quantiative Real Time PCR Log IU/MI..Result 7.02 Flag H Reference <1.18.

That is the same number expressed in two different ways

The first 10,544,933 is a straight counting number like we all use everyday. The second 7.02 is the same number expressed on the logarithmic scale a mathematical scale researchers prefer to use when studying different things in this case a viral load.

So most of us would say that my viral load is .... in your case this would be about 10.5 million. While that sounds like a big number it doesn’t really matter as far as treatment success and as Gaj said it doesn’t correlate to extent of liver damage as evidenced by your fibrosis score of F1.

The majority of your test results are in normal range so you are in great shape.

As far as being vaccinated against hep A or hep B I would just go with what your doctor recommended if they feel you need them. Especially if you are not at risk of contracting them like say if you work in the medical profession.

My doctor had me get vaccinated against Hep A and B only after I was diagnosed with cirrhosis.

I know it is really scary right now but is sounds like you are in good hands. Soon you will be able to put all this behind you and this will be a distant memory.

Since it has been a while you may consider checking in with your insurance to see what is the hold up if you haven’t heard anything. Sometimes they may need a test result or other information from your doctor. This isn’t like just having a cold and getting some meds. Unfortunately we often have to be a bit more proactive in getting treatment for hep c especially because of the costs of the meds. Last I heard Harvoni was $1125.00 a pill or $31,500.00 for a 4 week supply so you can imagine many insurers are sometimes reluctant to approve treatment. It has gotten better but when Harvoni was first approved many of us had to fight with our insurance companies. Hopefully, you won’t have any issues but we have good information on other ways to get meds. But don’t worry about any of that right now. Like I said I’d has gotten better since the meds were first approved in 2014.

Best of luck with treatment!
« Last Edit: November 15, 2017, 12:56:03 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline darlene

  • Member
  • Posts: 4
Re: Just Diagnosed
« Reply #7 on: November 16, 2017, 01:52:59 pm »
I am waiting for to hear from my insurance company re my hep c medication...I have been prescribed  Mavyret and wonder if anyone else is on this, how and when you take it and have you had any side effects?  I have been waiting almost 2 months and still not sure when I will be getting this medication.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Just Diagnosed
« Reply #8 on: November 16, 2017, 04:15:22 pm »
Darlene, I did a search of this site to see if I could find a thread of people already on Mavyret, but found just one of a person who might be put on Mavyret.

Mavyret is still very new*: the FDA approved it on August 3 of this year. That could be another reason you are still waiting to hear from your insurance company. In the mean time, here is the official web site: https://www.mavyret.com  Note that you can download a product summary and that, if you have regular, nongovernmental insurance, you can take advantage of an offer from the manufacturer to pay almost nothing (the manufacturer will pay most of your copay).

Gnatty

*Of course, to get approved by the FDA, Mavyret had to do well in all phases of the clinical trials, so all the people in the clinical trials have done the treatment. But you will be early in the "real-world" phase, as many of us were for Harvoni.
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

 


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