Conflicting tests

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/14/2016 7:26 AM (GMT -6)   
Hi Everyone,
I have had Hep C since 1996. I went on Pwf and Riba in 2003 in hopes of cure but I have 1 A and went from 390,00 to 30,000 in 6 months. It about ruined my marriage and my life - it nearly killed me.
Anyway I have never felt wonderful since. I always have mild brain fog and fatigue .
2 years ago my Gastro said my Liver was stage 1 and virtually no scarring. My liver functions were slightly elevated as always.
Last fall I started having fatigue, some itching, skin problems and horrible bloating after meals.
I had blood tests ordered by my gastro and saw him on Feb 4th. He said my viral load was 958,000. He said my Liver was stage 4 and I needed to get every test in order so I could start Harvoni as fast as possible.
He sent me for varices endoscopy and that showed no varices. The next day Feb 9 I had a CT scan. I received the results on a Web Portal set up and the entire document stated no ascites, no hepatic masses, no cirrhosis etc.
I am waiting to see the Dr in 3 weeks and I'm wondering now what the heck. Am I in bad shape or not..My Dr told the nurse I needed to wait for my visit and then we could talk.
Confusion has set in.
Anyone had this type of deal ?

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 2/14/2016 10:40 AM (GMT -6)   
Welcome, stu58.
If you're drinking alcohol, stop.
No varices, no ascites and no enlarged spleen, so you are not too worse for wear.
Compensated cirrhosis can be reversed with clearance of the virus.

Take a few deep breaths.
Go to Gilead dot com and click on the 'SupportPathTM for Sovaldi and Harvoni' link.
Read about the program, and when it comes time to get the Harvoni register for your copay coupon.
I paid five bucks a refill and insurance paid the rest. It's a beautiful thing considering a $2000 copay without the coupon.
You will probably be prescribed for six months since you are stage four (cirrhosis).
It's a 99% cure rate at six months.

I had geno 1a and failed two prior treatments. I have since gained SVR with Harvoni.
I have been SVR for over six months. I will do ultrasounds once a year to check for liver cancer.
It all seems pretty grave, but nothing like having cirrhosis and HCV.

So, your outlook is pretty good.
Keep in touch.
dog

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/14/2016 11:28 AM (GMT -6)   
Hi Dog,
Im not drinking at all. I haven't been drinking since I was a young man. I had more problems with other things but thats in my past and I've been sober and clean for 2 years.
Congrats to your 6 months SVR Dog- I don't know.much aboit Harvoni and Sovaldi. The Peg Interferon and Ribavarin was hard on me I think it was 2002.
I have Aetna insurance and know they will pay for Harvoni after we push them. My Dr had prescribed Riba varin for me already but he said not to take it until I start Harvoni. So do you think the blood tests would be correct and will actually take Harvoni ? I'm going to be nervous until my Dr visit. Good luck to you and I will report back how things go. My journey had begun.

Post Edited (stu58) : 2/15/2016 1:33:06 PM (GMT-7)


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 2/14/2016 6:31 PM (GMT -6)   
hey stu,
wow!!!! blood work says stage 4, ct says no cirrhosis. hhmmmm
harvoni doesnt need ribavirin, unless there are advanced symptoms.

your dr is ordering a full spectrum of tests. He/she should be able to give you a much better evaluation of your liver condition.. i would stay with the original dx of stage 4, for insurance purposes..its prioritized by staging. for me, i would want a fibroscan

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/14/2016 6:56 PM (GMT -6)   
Ppm guy,
I really guess I better see another Dr too ? I had a good one in Salt Lake City in 2002 but I live in SE Idaho now.
I have a ton of questions and I'm not feeling very patient waiting for my Dr appt. He told me it takes 1-3 months to get Harvoni approved and he said 1 month was the wuickest. I'm at a point I don't know much other than I'm worried. I belonged to. Hep C forum 14 years ago but after TX I regained my health with a good diet. I'm 57 years old now and 6'2" and weigh 274 which isn't too good. I'm trying to return to the gym after having months of Plantar Fasciitis .
I'm all ears to people here and will take notes.
Stu

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 2/14/2016 9:11 PM (GMT -6)   
Hey Stu.
I have a better understanding of your situation now.
This is your second treatment, geno 1A, you're 57, 6'2", 274 lbs.
You are treatment experienced, so you know this is a huge mental battle.

If you study the Gilead charts, there's two treatment paths for your situation, with cirrhosis (also known as stage 4 fibrosis).
Harvoni with ribavirin for three months. If I remember correctly, about a 96% SVR rate. I forgot the relapse rate.
Harvoni alone for six months. <--- preferred, if you can influence your doctor to prescribe this option you will be happy to not deal with ribavirin. 99% SVR rate, 0% relapse rate.
However, if you decide to go the shorter ribavirin route, more power to you.
Perhaps you need a second opinion. The local university medical college is a good place to find the cutting edge of treatment.

Make sure you go to the Gilead website and check out the copay program. If you want to save money, that's the way to go. I didn't know about it when I did Sovaldi, I payed a $400 copay. I only paid a $5 copay with Harvoni.

Keep in touch, brother.
dog
Oct 15, 12 wks Post Treatment, HCV Undetected, all enzymes normal except bilirubin 1.7
Past Treatments: Geno 1a, Compensated Cirrhosis
Jul 15, End treatment Harvoni 24 weeks
Dec 14, Alt/Ast 365/207, Bili 1.1 (normal)
May14: Post treatment PegInterferon, Ribavirin, Sovaldi (12 wks) Undetected / Relapse / Fail
Feb 14, Alt/Ast 628/395, Bili .8 (normal)
2000: Interferon, Riba (48 weeks)

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 2/15/2016 11:46 AM (GMT -6)   
stu,
I would let your dr run the tests, do their staging and supplemental bloodwork. your dr seems ready to get harvoni rxed for you. basically, thats what we all want. your dr is correct, it takes time to get approved for harvoni.

keep posting and ask any and all ??s. and try to relax, a few months more wont hurt you.

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/15/2016 12:44 PM (GMT -6)   
ppm guy,
Thank you I guess I'm going to find out properly as I'm sure the insurance won't want to let me have Harvoni unless the proof is good. I will fight the good fight though.
Thanks bro

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/15/2016 1:57 PM (GMT -6)   
Hey stu,

Congrats on maintaining your sobriety for 2 years!
I know where you're at man...I'm a recovering addict myself. I'm blessed to have rounded the 25 year mark and headed for my 30 year anniversary. My sponsor said it was ok for me to mark it every 5 years now...lol...he's at 35 years...God Bless that man.

You've gotten great advice from Dog and ppmguy, but like they said, don't be in a hurry right now and keep your expectations low and your hope alive. You know what they say about expectations...
Yes, they prioritize based on staging, but many of us have been approved 1st time around despite being in good shape.
And even if denied, there is a great deal that can be done...starting with appeals which are frequently successful.

Hang tough and keep the faith

_____________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/16/2016 11:26 AM (GMT -6)   
Thanks woofer,
I had my appt updated from 3/21 to 2/18 which is this week ! So I would appreciate any questions you guys think I should ask . Mine so far are why does my CT scan look so different from what my blood tests say, I'm curious if my genotype which they tested for says the same as 14 years ago (in case the lab is making mistakes) , what do I need to do to prepare for Harvoni approval and treatment.

Post Edited (stu58) : 2/17/2016 9:09:39 AM (GMT-7)


stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/18/2016 10:31 AM (GMT -6)   
Hi ,
Today I am smoking a Prime Rib for a big dinner. My son was in some trouble and he is home so I promised we would eat one of the roasts I stocked up on at Christmas. I have a Masterbuilt Smoker that is electric and I love it.
The appt for my Dr is at 3 pm today. I will find out a little more and get some questions asked. Maybe start the process of Harvoni application if he is still leaning that way.
I've been trying to drink more water and get a little time on an excercise bike at the gym. I tire out so profoundly it's scary the day after I am wasted.
I will post up later what I find out. Keeping my fingers crossed for any good news .

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4793
   Posted 2/18/2016 3:00 PM (GMT -6)   
Stu, I have been following your posts, but have been preoccupied with the details of my own life for a bit.

So...belated, welcome to the forum, or back if you were here the last go round with treatment drugs.

I will be interested to hear your new information after your dr appt today.

My partner, Mike, had Hep C for years. He took the Riba and Inf in 2003 and to quote you, it about killed him and broke up our relationship...he had the grumpies and worse on that stuff...and was sick for the while 6 months he took them. UGH. His Hepatologist heard the horror stories from Mike and considered him treatment experienced and basically unable to take Inf or Riba again. For 1a, experienced, they prescribed Olysio and Sovaldi. He cleared in about 4 or 5 weeks, has been UNDETECTED since April 2014. Along the way he had a transplant and a heart valve replacement....so he has had a time of it. I have to say that he still and likely forever will tire easily and takes a bed nap every afternoon. He is 66, 5' 7" and 185 lbs. He is trying to drop some weight. He has difficult to control hypertension, takes prograf for antirejection, has stage 3 renal disease.

He was thrilled to skip the Riba. His nice new liver was a Stage 3 fibrosis before treatment...we are not sure now as no one has done a fibroscan or biopsy...they just go by the LFTs and say he is doing as well as can be expected.

Best to you that you get on treatment soon.

Hugs, Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/18/2016 11:06 PM (GMT -6)   
Wow Mama,
I am so sorry to hear of all your man has gone through. He must be a trooper as I think some people would just give up or worse. But life is still good when you are sick because of the ones we love.
I saw my Dr and it went better. He said my fibrosis isn't bridged and just said my CT scan showed I wasn't in real danger but a sure fire #1 guy that needs treatment. He said he wants 12 week Riba/Harvoni. So that is my path and called the insurance today . The insurance said they hadn't heard from my Dr yet but he said they had done their part. So I called and left a message at the Dr office to please call the insurance again.
Im.fired up and ready to start.
I made it to the gym today and did a light weight and cardiovascular workout.
My Dr said I won't encounter anything compared to the hell I endured on my treatment in 2002.
I remember I did 3 months of interferon and Riba and then 3 more of Peg/Riba because it had just came out during my interferon/ Riba course.
I made it to 6 months then dropped out as I wasn't winning but getting sicker from the meds.

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/19/2016 9:36 AM (GMT -6)   
Hi again stu,
Glad to hear it went better with your doc...and no bridging!
(sounds like ~F2) and Aetna is just waiting to hear...good news all around. Hopefully, your "case" is just working its way through the bureaucratic mess.

Anyway, really happy for you...can't wait to hear that you're approved!

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/25/2016 9:36 AM (GMT -6)   
Hi,
I called the insurance and they said the same as last week -they hadn't received anything on it.
So I contacted the nurse and she said Premier Pharmacy was supposed to collect the info and send it to the insurance. I then contacted Premier and they said they resubmitted 24 hrs previously to my insurance.
I guess I will call on Friday while I'm on a road trip and see if anything has happened.
I don't like doing this.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/25/2016 10:22 AM (GMT -6)   
This treatment does take more time to work through the approval/insurance maze. Hang in there :) Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/29/2016 12:58 PM (GMT -6)   
I have some news, lol. They said today that there was action pending. Could go either way but they told me I should get a phone call soon.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/29/2016 2:19 PM (GMT -6)   
Hi stu, Here is a link about appealing an insurance denial. Many have been denied and appealed before getting Hep C treatment. Don't give up. Big Hugs


www.healingwell.com/community/default.aspx?f=25&m=3315494
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 3/1/2016 8:19 AM (GMT -6)   
Thanks themiz. If I don't get an approval by next week I'm going to get the ball rolling any way I can. I don't want to finish 12 weeks of TX in the hot summer.

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 3/2/2016 1:11 PM (GMT -6)   
My Harvoni was approved today ! Woot Woot ! Copay is 5 dollars. They want to send the Riba and Harvoni together and my regular pharmacy already had my Riba so they have to cancel it first then I can have shipment.
It's time real soon and I'm very grateful.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 3/2/2016 2:41 PM (GMT -6)   
Wonderful! Soon you will be cured :) Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 3/3/2016 11:25 AM (GMT -6)   
Thank youthemiz,
It arrives on Monday so I will start on tuesday. I have to take Riba with it so I will have some effects but 12 weeks isn't forever . I made it 6 months on Peg and Riba in 2002 but I was nuked by the 4th month.
This will be easier I'm sure without the interferon.

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 3/3/2016 6:57 PM (GMT -6)   
Way to go stu...really happy for you.
Yeah, no doubt it'll be a far cry from the Interferon days.
I've been undetected for 2 1/2 years now so definitely no complaints from me, but the 24 week tx. of Interferon, Telaprevir and Ribavirin was darn ugly. I'm happy that with the current meds, you and others are able to get a much kinder, gentler, yet very effective tx.

Piaf
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/3/2016 7:49 PM (GMT -6)   
. I don't understand what to do now. Not tech savvy......

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 3/3/2016 8:30 PM (GMT -6)   
Here is something weird. I had my insurance take my credit card and promise delivery monday. Then they said a Pharmacy called Premier who had helped to do the pre Auth had sent a claim for the Harvoni and that I had to call that pharmacy to reverse the claim. So I called and they acted bent out of shape and said I shouldn't have given the Aetna Specialty Pharmacy the prescription Co pay because it was theirs. I'm so confused I guess I deal with it tomorrow.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 3:09 PM (GMT -6)
There are a total of 2,886,211 posts in 316,689 threads.
View Active Threads


Who's Online
This forum has 157786 registered members. Please welcome our newest member, Georgio.
985 Guest(s), 16 Registered Member(s) are currently online.  Details
NicHostetler, imagardener2, Lapis_29, somegirl, Astronut, Purrrsiankitty, dacarte3, ArtAngel, The Dude Abides, Loutucky, Fronton, tonyaraven, Uniform Charlie, Dmc695, Lwnsmld13, leo77


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer