Welcome, Guest. Please login or register.
June 12, 2024, 01:36:02 pm

Login with username, password and session length


Members
  • Total Members: 6309
  • Latest: Vicki
Stats
  • Total Posts: 55127
  • Total Topics: 4851
  • Online Today: 134
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 135
Total: 135

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: Starting Harvoni  (Read 26804 times)

0 Members and 1 Guest are viewing this topic.

Offline Tug

  • Member
  • Posts: 19
Starting Harvoni
« on: July 20, 2016, 05:04:54 pm »
  I picked up my first bottle of Harvoni  today at my doctors' office. I am 65 years of age and I will be starting treatment on August 1st because the doctor wants my system to  clear a prescription that I was taking. I probably contracted HepC in the early 1990 's , here are a few stats that I was given by my doctor.
AST 40
ALT  75
RNA Viral Load Detected    1.34E+6 IU       taken on 2016-04-12
RNA  Viral Load  Detected   5.16E+6           taken on 2015 -07-08

I am not sure why the two RNA Viral loads are so different?

I was wondering can you take another prescription pill  at the same time that you take your Harvoni  pill. ?
 

Offline Flutterby

  • Member
  • Posts: 38
Re: Starting Harvoni
« Reply #1 on: July 20, 2016, 07:04:13 pm »
Hi Tug,

Good luck with the Harvoni!

Interactions vary from major, moderate, to minor, so it depends on what you are taking. You can check this site for drug interactions that have been tested:

https://www.drugs.com/drug-interactions/ledipasvir-sofosbuvir,harvoni.html

Note it's not just prescription medicines you need to watch out for. There may be some interactions with certain vitamins, and other things like St. John's Wart, and even antacids/indigestion tablets, etc.

Of course, best to check with your doctor specifically regarding what it is you are taking.

I'm sure those with the experience of taking Harvoni on this forum might also have some handy tips! Good luck again!
G3,
early 80s; dx 2006
Tx started 07/07/2016
12wks - Daclatasvir/Sovaldi

Offline its time

  • Member
  • Posts: 102
Re: Starting Harvoni
« Reply #2 on: July 20, 2016, 07:09:47 pm »
hi tug     welcome to the site... everyone very helpful here...
good luck with your upcoming treatment...
4.16.16  VL 1.7 million  AST 62   ALT 80  RBC  4.84
HBG  15.4
GENO TYPE 1A
7.9.16   Viekira + Riba 12 WKS (EOT 9.30.16)
7.23.16  2 wk lab
     VL  20    AST  20   ALT  16   RBC 4.05   HBG 12.6
8.6.16  4 WK LAB
     VL UNDETECTED  AST 14   ALT 14   RBC 3.98
HBG 12.4
9.3.16   8 wk lab
     VL UNDETECTED  AST 14   ALT 10    RBC 3.74
HBG  11.9
10.8.16  12 WK EOT
    VL  UNDETECTED  AST 16   ALT  12   RBC  3.76
HBG  12.0
END DECEMBER GO FOR 12 WK BLDWK
1/5 2017 HEP C FREE.. CURED :)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Starting Harvoni
« Reply #3 on: July 20, 2016, 08:46:02 pm »
Hi Tug and welcome to the forum! This is an absolutely wonderful site and glad you found us.  Lots of support and good information, plus a very good place to just vent if you need to -- we understand.

The site flutterby provided is a good source, but your doctor and specialty pharmacist should be able to answer your question re: other prescription drugs w/ Harvoni. Be sure to ask them any and all questions you have, as they are your best bet for specific advice for you. Many members on this forum report taking a variety of other meds during treatment, it just depends on the person's medical status and specific drug.

I finished my 12 weeks of Harvoni in May and it was very uneventful.  Be sure to drink a lot of water, as this drug has a very dehydrating effect.  This will help you to avoid headaches & constipation/gas. We refer to this treatment "ride" to be on the "Harvoni Train", so again, welcome and hope you have as pleasant a journey as I did! The future is bright --- FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #4 on: July 20, 2016, 11:34:24 pm »
My short answer about your viral load result is don't worry about it it really doesn't mean anything one way or the other.

Viral load varies all the time you could have another test and it will be more like the earlier one. The only thing you know is you do have a viral load.

The numbers you listed are in scientific notation so 1.34E+6 means 1.34 times 10 to the 6 power or 1,340,000 IU/mL of your blood. While 5.16E+6 is  5,160,000 IU/mL of your blood. While those may seem like a big difference they really are not considered clinically significant and in fact viral load has no relationship to severity of illness.

If you convert your results to logarithmic form your 2016-04-12 result is 6.127 log 10 while your 2015 -07-08 is 6.713 log 10 which is commonly the way medical researchers look at things like viral colonies. As you can see in log form they don't look quite as different.

As far as other medicines you can look at the prescribing information sheet that comes with your prescription I have provided a link here.

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Check section 5 for WARNINGS AND PRECAUTIONS

and Section 7 for DRUG INTERACTIONS

Good luck on treatment
Lynn
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 Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #5 on: July 21, 2016, 09:42:57 am »
 
I  just called my doctors nurse and she will consult with the pharmacist regarding taking other pills with the Harvoni , now I just have to wait until August 1st to start.

Thanks for all the information.

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #6 on: August 01, 2016, 11:57:15 am »
Started treatment with the first pill this morning at  7:00 am . I will let you know how things progress in one week. Forgot to mention that I am ( 1b ). and my doctor only checks RNA viral load at 12 weeks and than 3months after that.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #7 on: August 01, 2016, 01:20:39 pm »
Hi Tug

There is truly no value on on treatment testing for the virus it just adds to your stress levels. Really even the EOT end of treatment test only says you are not detected when you have finished treatment. Really the only test that matters is the 12 week post treatment that one will determine if you are cured.

Good choice to check with your doctors office another option is Gilead support path they have a nurse line to also help with any questions.

Good luck     
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 Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #8 on: August 08, 2016, 07:43:38 am »
Well I am 8 days in and nothing major to report .Day one I felt a little spaced for the first couple of hours  and the rest of the week not even that. My HepC nurse says some people usually report some nausea during week 2-3 but most just bare though it.

I tried contacting the Gilead support nurse in the usa and the one here in Canada just to touch base but was unsuccessful. I will check back in next week to report my progress , hope it is as uneventful as week one. Thanks.

Offline brie41

  • Member
  • Posts: 191
Re: Starting Harvoni
« Reply #9 on: August 08, 2016, 09:10:56 am »
Hi Tug,

  Welcome and best of luck on your treatment.  Harvoni really is a walk in the park for most of us.  Keep your  water intake up, so important!!  It was easy for me as I was so thirsty all the time while treating.  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline Baxter

  • Member
  • Posts: 87
Re: Starting Harvoni
« Reply #10 on: August 08, 2016, 02:59:10 pm »
Well I am 8 days in and nothing major to report .Day one I felt a little spaced for the first couple of hours  and the rest of the week not even that. My HepC nurse says some people usually report some nausea during week 2-3 but most just bare though it.

I tried contacting the Gilead support nurse in the usa and the one here in Canada just to touch base but was unsuccessful. I will check back in next week to report my progress , hope it is as uneventful as week one. Thanks.

Hi, Tug,

That sounds pretty typical. Most people don't have much in the way of side effects, and those who do usually don't have anything severe. My own experience was sorta the best and the worst of both worlds - I started off great, but over the course of the 12 weeks, did wind up experiencing quite a lot of the sides... however, in almost every case, I only had them for a day or two before they subsided, and they were almost never very severe. The only exception was insomnia. I had that really bad for most of the first few weeks, and while it did taper off rather sharply, I had to fight that one the whole 12 weeks. However, Ambien took care of it, and I pretty much sailed through the treatment.

So the point is, even if some side effects do pop up here and there along the way, don't worry too much about it. Sometimes, they just come and go. Just ride it out and take it one day at a time, and before you know it the whole thing will be over and you can start living the rest of your life. Even if they get bad, the whole thing only lasts 84 days, and every day brings you closer to the last day. For most of us, it was just amazing how fast those 12 weeks flew by - looking back, it feels like it was maybe a week or two. I'm betting your experience will be the same.

Good luck to you!
Gen 1a
Inf. '85
Dx '98
'98 biopsy - Grade 2, Stage 2, VL 7 mil
'01 biopsy - Grade 1, Stage 1, VL 1.5 mil
'08 biopsy - Grade 1, Stage 1, VL 3.5 mil
'12 biopsy - Grade 1, Stage 1, VL 3.5 mil
'16 Fibrosure - Grade I, Stage 3, VL 6.4 mil and 4.8 mil
4/23/16 - ALT 89, AST 50, pltlts 120k. Started 12 wks Harvoni
4/31/16 - ALT 30, AST 21, pltlts 125k
4/14/16 - ALT 25, AST 16, pltlts 126k, VL 69
5/11/16 - ALT 28, AST 21, pltlts 140k,VL <15
6/7/16 -EOT, UNDETECTED!
9/7/16 - cured. Low Stage 2 fibrosis

Offline bharrisrn

  • Member
  • Posts: 10
Re: Starting Harvoni
« Reply #11 on: August 09, 2016, 11:54:18 pm »
Hi Tug - Welcome to the forum. I haven't been on here much but it is a great resource and comforting to know that we are all in this together! Best of luck with your treatment. I am on day 24 of Harvoni with 60 more to go. Minimal side effects to report. One day at a time and we will be done before we know it!
Bridget

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #12 on: August 10, 2016, 07:56:50 am »
  Thanks for the information and encouragement. Tug

Offline bharrisrn

  • Member
  • Posts: 10
Re: Starting Harvoni
« Reply #13 on: August 24, 2016, 01:31:35 am »
Hey Tug - hope you are doing well. I am at day 40 and my viral load came back undetectable with normal liver enzymes! 44 more days to go. Nothing significant to report in the way of side effects. Very tired and thirsty.
Bridget
 

Offline hummingbird57

  • Member
  • Posts: 39
Re: Starting Harvoni
« Reply #14 on: August 24, 2016, 08:24:26 am »
Hi Tug - started Harvoni early July and into the 8th week now.  It's been pretty smooth sailing.   A little insomnia - I take zzzquil (check with your doc) 1 hour before bedtime and usually sleep well.

Waiting until EOT for bloodwork the same as you.  It's the only 1 that matters and then 3 months post EOT as well.

Good luck!

Beth
Genotype 1a
contracted 1975/ dx 2003
treatment naive
Harvoni tx - started 7/3/16
Treatment completed - 9/24/16
EOT - 10/6/2016 - HCV Undetected!!!!!!!

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #15 on: August 24, 2016, 10:24:37 am »
I  am into my 4th week and nothing to report, no side effects yet. I did some blood work yesterday and reviewed my results on-line today. ( LifeLabs ).
I forget to mention that my Genotype is 1b  and my fiber-scan was F2.

AST = 23
ALT = 24
 
I will post results when I next get them. Good Luck and Thanks.

Offline brie41

  • Member
  • Posts: 191
Re: Starting Harvoni
« Reply #16 on: August 24, 2016, 01:58:06 pm »
Hi Tug,

  Well you are on your way and I wish you the best.  Hope it is going well so far!  I think it is important to take the pill at the same time everyday and do your very best to not miss one.  That is the only thing I can add to the great advice you have already been given.  Don't forget to drink plenty of water throughout the day.  Good luck!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

Offline impossibletoregisterhere

  • Member
  • Posts: 5
Re: Starting Harvoni
« Reply #17 on: September 09, 2016, 01:35:34 pm »
Yes. I was cleared on several other meds I was taking both with my internist and the Harvoni manufacturer. I got clearance on all pharmaceuticals and some over the counter stuff like benidril. (diphenhydramine)

On a side note I finished the treatment last week and it was 100% effective...zero viral load and I was utterly free of any discomforting side effects during treatment.

Harvoni, as you know, has a huge success rate,

Please contact your health pro to get confirmation on specific meds you take with it.


Offline Lilly White

  • Member
  • Posts: 7
Re: Starting Harvoni
« Reply #18 on: September 19, 2016, 11:11:27 am »
I started walking every morning and few weeks ago. Day four on harvoni and still felling good! It's kind of like nesting before giving birth I've been busy getting my ducks in a row. And still feel like excersing, Feeling encouraged.
Started Harvoni 9/16/16

Scheduled for 12 weeks
GT 1a or 1b
ALT 120
AST 61
Fibrospect II   17
Treatment naive


Probably infected in the 70's
Both kids tested negative

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #19 on: September 22, 2016, 12:48:05 pm »
Well I started week 9 Monday and checked my results
 ALT  24
 AST  21   

 I have no side effects and taking Harvoni is just like taking an vitamin pill , I saw my doctor this past Tuesday and he said I looked good.  BUT .. he also said this all really doesn't mean much.  He said what counts is the 3 month blood test after my last pill is what counts. Some people can be undetected after they finish taking Harvoni but three months later can still have HepC ... anyway these small victories still make me feel better.  Good Luck to everyone and I will post my next blood test in four weeks.

Offline dragonslayer

  • Member
  • Posts: 873
Re: Starting Harvoni
« Reply #20 on: September 22, 2016, 12:55:42 pm »
Well I started week 9 Monday and checked my results
 ALT  24
 AST  21   

 I have no side effects and taking Harvoni is just like taking an vitamin pill , I saw my doctor this past Tuesday and he said I looked good.  BUT .. he also said this all really doesn't mean much.  He said what counts is the 3 month blood test after my last pill is what counts. Some people can be undetected after they finish taking Harvoni but three months later can still have HepC ... anyway these small victories still make me feel better.  Good Luck to everyone and I will post my next blood test in four weeks.

Yup.. I was like that.  Check my sig for details.  It's not usual but it happens... Thankfully!  I had an easy time with Harvoni too.. Until that eot blood test, that is.  Low level detected does NOT mean treatment failure with Harvoni.  Don't sweat till the 12 wk post treatment test comes back positive, which it hardly ever does.
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline impossibletoregisterhere

  • Member
  • Posts: 5
Re: Starting Harvoni
« Reply #21 on: September 23, 2016, 04:47:18 am »
Hi

Saw my Internist today...finished 3 month treatment with Harvoni 9/1/2016 with a zero viral count. He advised me that in 'rare cases" there can be remission but so far no one from his office. My last blood test was the day of the last pill on 9/1/2016.

He showed me the printouts with the 0 viral load. I did not even ask for frame able copies.I trust him and his office. He did not even suggest a several moth follow up...I probably will within 6 months anyway....BUT....I am enjoying the lovely  NOW...I am cured...little to no likelihood of remission. Harvoni is a wonderful great advance over interferon.

And if...some months down the road...it starts to climb back...I'm told there are yet new advances since I started taking Harvoni.

Ya know...my life is far from perfect...but I'm no kid at 64...and it is great and I am thankful Have come this far. 'm sure you all know the enormous cost of this treatment and the "insurance magic' needed to proceed without a trip to the poor house. A good team makes it all go through.

I gave my doc a hug...and I'm not usually so demonstrative...and thanked his staff and walked out the door..

I learn what I need and let the pros do their job. I am ok and if I learn I gotta do something else down the road I will...The point is to keep finding the good stuff in your life and live it as well as you can...whatever the outcome...a cure is just a huge plus...it just shows us how fragile and precious the real issue is...which isn't even obsession with a disease...it's getting the most you can out of the parts of life that renmain good...however little they may be....


D

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #22 on: October 10, 2016, 09:20:08 pm »
Started week 11 today and still no side effects of any concern. Does anyone know how long after completing my Harvoni treatment can I re-start taking those medications I had to stop while on Harvoni. Thanks.

Offline andrew j

  • Member
  • Posts: 477
Re: Starting Harvoni
« Reply #23 on: October 11, 2016, 09:56:57 pm »
Hi Tug,

If I remember correctly, the liner notes that came with the Harvoni said that the Ledipasvir component of Harvoni takes about 48 hours to leave the system - whereas the Sofosbuvir leaves quite quickly.

... Somewhere else I read to leave it a week before re-starting meds.

I was only going back to supplements.
I waited until the fifth day after taking my last pill.
If I was going back to meds ... I don't know - maybe a week?
It depends on how much you need them, I guess.

Sorry - this isn't a very scientific reply.
Maybe the Gilead help-line can help?

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #24 on: October 12, 2016, 08:02:02 am »
Andrew j  your may be right , I had to stop taking this certain medicine two weeks before starting Harvoni. Maybe I have to wait two weeks after finishing Harvoni to start again. Thanks for the reply.  Tug

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #25 on: October 18, 2016, 10:21:09 am »
Well I have 5 pills left to take and just did my blood work Oct. 17th
 AST 26  ALT 22     I  will find out on November 3rd what my SVR 12  is when I see my nurse. Hoping for the best.
 Have been experiencing mild joint pain this past week .( I did  tar the carport roof ). but all in all I have had a easy go of the Harvoni treatment. I will post my results . Thanks Tug.

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #26 on: October 18, 2016, 02:09:36 pm »
 This is a correction from my last post.  On November 3rd when I see my nurse hopefully I will find out what my current viral load count is not my SVR12 .
I just spoke to my nurse today and she wants me to wait 2 weeks after I finish my Harvoni treatment before resuming my regular medication. Thanks Tug

Offline andrew j

  • Member
  • Posts: 477
Re: Starting Harvoni
« Reply #27 on: October 18, 2016, 05:07:41 pm »
You're all sorted then, Tug?

Hoping that everything stays nicely on track for you.

A.


Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #28 on: October 18, 2016, 09:23:45 pm »
Yeah it looks like if you finish in 5 days your test for SVR 12 would be about Jan 16TH 2017
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 Tlk60

  • Member
  • Posts: 37
Re: Starting Harvoni
« Reply #29 on: October 19, 2016, 05:48:56 pm »
Well everyone....my time has finally arrived....My Harvoni was delivered today!!!

Here is a little history that brings us to today.......

In June I insisted that my doctor run some more tests to tell me why my ALT and AST levels were slowly increasing.  He told me it was nothing time and time again and finally I insisted....A week later my phone rings and OVER THE PHONE he tells me I have Hep C....left me hanging with no referral to a specialist....I did research and found a provider an hour away that was in network and had to wait only 2 months to see her....This was after being told by all providers in my area, "We don't touch Hep C." At my initial appointment we spoke for a short while on what was ahead of me and she ordered even more tests.  Fortunately her office has a medical assistant who is a patient advocate and she took care of filing my insurance and also dealing with the forthcoming denials and request for different drugs.  Once approved it was another two weeks to get the much awaited Harvoni....

I feel so blessed to not have to undergo a biopsy or fibroscan...I only had blood work and an ultrasound of liver and kidneys....

Wish me luck as I embark on my quest for a cure with Harvoni....

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Starting Harvoni
« Reply #30 on: October 19, 2016, 07:51:11 pm »
Congrats Tlk60! And good luck as you start your Harvoni journey. :)

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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #31 on: October 19, 2016, 08:01:58 pm »
A fibroscan isn't bad by the way. It is kind of similar to an ultrasound but with kind of a thump to measure liver stiffness. It is not invasive like a biopsy
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 Tlk60

  • Member
  • Posts: 37
Re: Starting Harvoni
« Reply #32 on: October 19, 2016, 08:06:52 pm »
What I meant was that I was fortunate I didn't have to have a biopsy or drive 4 hours one way for a fibroscan.  :)
Thanks to everyone for all the advise and encouragement.  I will post updates and hopefully all will be fine

Offline Tlk60

  • Member
  • Posts: 37
Re: Starting Harvoni
« Reply #33 on: October 19, 2016, 08:07:27 pm »
What I meant was that I was fortunate I didn't have to have a biopsy or drive 4 hours one way for a fibroscan.  :)
Thanks to everyone for all the advise and encouragement.  I will post updates and hopefully all will be fine

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #34 on: October 19, 2016, 09:03:42 pm »
ok yeah I can totally understand not wanting to drive 4 hours for a test

Congrats on getting your meds that is fantastic news!!

And so the battle begins :)
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 Tlk60

  • Member
  • Posts: 37
Re: Starting Harvoni
« Reply #35 on: October 20, 2016, 08:41:09 am »
 ;)  First pill down the hatch at 6 a.m. this morning!!!!!!!

Now I am being hypersensitive to my body looking for side effects...hahahahaha...silly me....all I am feeling is butterflies in my tummy from excitement to finally get started and get rid of this virus from my body!!!

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #36 on: October 23, 2016, 09:25:38 am »
Tlk60  it is great that you have started treatment with that first pill .
I just told my last pill today , I was surprised how fast 3 months want by and I am sure it will be the same for you.  Best of luck .  Tug.

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Starting Harvoni
« Reply #37 on: October 23, 2016, 12:29:10 pm »
Tlk60 -- Your post made me smile, remembering my first Harvoni pill.  I took it and sat down on the couch and waited for something --- wasn't sure what, but knew there would be something ----- and there wasn't!! I am still amazed at how little I felt, aside from a mild "Harvoni High", while these very powerful drugs were just smashing all those viroids!! My theme song was Queen's "Another one bites the dust" and I just so enjoyed envisioning those pesky little monsters getting decimated! Cheap thrills!

Treatment on Harvoni has been referred to in the past as riding the "Harvoni Train", another analogy I really liked.  I like trains, watching the scenery go by and found this a pleasant mindset for my 12 week treatment. Just keep a positive attitude and the time will pass before you know it.  The future is bright, FT

Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #38 on: November 16, 2016, 08:49:52 am »
Hi! Saw my nurse and was told that my doctor doesn't  test for the viral load count anymore after treatment. Now I will have to wait until mid January to get my SVR12

I found an interesting answer to my question about the half life of  drugs.
  Drug go through a 4 step process before they leave your body.
Example : if a drug have a 1/2 life of 10 hours than it would take  (4x 10 hours ) or 40 hours to clear your body. Hope this helps any.  Tug
               

Offline andrew j

  • Member
  • Posts: 477
Re: Starting Harvoni
« Reply #39 on: November 16, 2016, 03:30:14 pm »
Did you have a complete blood-test (including VL) at 12 weeks / EOT?
If so - it is standard practice (at least here in New Zealand) to only test again at 12 weeks post-treatment.
Here, they tend to only run tests that are absolutely necessary, in order to keep costs down.

(Mistaken calculation re the time it takes for ledipasvir to leave the body, based on a half life of 47 hours).
« Last Edit: November 17, 2016, 03:33:28 pm by andrew j »

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #40 on: November 17, 2016, 02:26:33 am »
Well 47 hours is correct for the half life which is about 2 days so 4 times 2 days would be 8 days not sure how you figured 3 weeks (21 days)

I have often seen 5 half lives rather than 4 so that would be 10 days from what I have read.
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 Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #41 on: November 17, 2016, 11:47:07 am »
Andrew   they didn't test me for VL after I completed my Harvoni...said it wasn't necessary. Now I have to wait until mid-January to find out anything , would of been nice to know anyway.

Offline andrew j

  • Member
  • Posts: 477
Re: Starting Harvoni
« Reply #42 on: November 17, 2016, 03:12:03 pm »
I reckon, Tug.

Some of these Drs. don't seem to appreciate how anxious we are feeling about whether we will clear or not, and that it is psychologically beneficial, if nothing else, to know how our treatment is progressing.

Hang in there!

Lynn,

Yes. You are right.
I miscalculated.
I multiplied by 10, instead of by 4 or 5.
« Last Edit: November 17, 2016, 03:29:22 pm by andrew j »

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #43 on: November 18, 2016, 02:24:30 am »
Hi Tug

Odds are you would have tested not detected but we did have a couple of folks here who were weakly detected at EOT and even at 4 weeks post but went in to make SVR12 you can check out dragonslayer it happened to him.

Sometimes not knowing is better. He ended up worrying over nothing as it all turned out. Had he not has the EOT test and only the SVR12 test, which is the only test that really matters, he would never have had to experience all that unnecessary stress and anguish of thinking he failed treatment.

Just assume you are clear and you will know for sure in 12 weeks and can celebrate your real victory then
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 Jenn

  • Newbie
  • Posts: 1
Re: Starting Harvoni
« Reply #44 on: November 20, 2016, 05:51:48 am »
Hi everyone,
I've been hanging around here reading since starting Harvoni. I'm into the 5th week. (started 13 October).
Diagnosed with the HCV in the mid 90's, I'm 58 and then was diagnosed with stage 5 cirrhosis in 2004, find that hard to believe as doctors have even said I should be dead by now but I did have a few months of acupuncture after having the liver biopsy, my liver reading came down to normal after that.

Anyway, as I said, started Harvoni  on the 13th of October, 1st week was a breeze, 2nd week about 2 hours after taking Harvoni I felt cold, very cold in fact, that didn't last thankfully, 3rd week my vision was very blurred and it still is. Got the muscle aches too, also ringing in the ears, nothing that is unbearable though.

I don't know what my liver readings are, the nurse did send me for a blood test last time I saw her, I go back every 4 weeks so I can ask what the results were next time I see her. I'm on a 12 week course.

I had a major stomach operation 2.5 months ago and am still having problems with that, that is when I was also told I still had cirrhosis, I always brushed it off as nothing but lately have felt a dull stiff ache where the liver is, I don't know if this is a psychological thing or if the Harvoni is doing it but I have been on strong pain killers since the operation so maybe they are affecting the liver.
 
Since the operation I haven't eaten much, never was a big eater but have lost my appetite, also since being on Harvoni, I have put on weight! Don't know how I could put on weight when I don't have a big appetite. Lot of bloating too and gassy, anyone else experience these including the weight gain?

I was told to stop taking Milk Thistle tablets and they asked what else I was taking, so they are aware of the pain medication. With the stiff dull ache down the right side, I keep checking my eyes to see if they are still white. Can I take Vitamin A?

Thanks for listening, I'll check back in a few days time, maybe I'm freaking out over nothing, even the palms of my hands look redder than they normally do.
Jenn

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #45 on: November 20, 2016, 06:16:21 pm »
Hi Jenn

So sorry to hear your health problems. You should discuss all medicines you want to take with your hepatologist especially as you have liver cirrhosis also called ESLD or end stage liver disease. I did see that vitamins A can be toxic to the liver https://livertox.nlm.nih.gov/VitaminARetinoids.htm

So I would advise against taking it.

I was diagnosed with F4 liver cirrhosis with liver biopsy in Jan 2008 as far as I am aware ther is no F5 only F4 cirrhosis and further defined by compensated vs decompensated cirrhosis. From what I have read for our prognosis we have a 50% chance of going into liver failure 10 years post diagnosis with early cirrhosis so that would mean a 50% chance of still remaining compensated at 10 years which would explains why you and I  are both still here.

I assume you are under the care of a hepatologist associated with a liver transplant center if you are not you should be as they are best equipped to follow those of us with advanced liver disease.

When I was diagnosed with cirrhosis my doctor immediately had me get vaccinated against hep A and B along with the pneumonia vaccine. Also I had an upper endoscopy to check for esophageal varicies which were grade 1 at that time. Two years later I had a repeat upper EGD and had grade 2 varicies then one year later they had increased to grade 3 and required banding be done. I also developed pitting edema and some ascities in 2008 for which I take a duretic. I had my gall bladder removed in 2012 due to gall stones likely from cirrhosis.

I hope you have had an upper EGD also as well as those immunizations. I have an abdominal ultra sound every 6 months along with a blood test called AFP to monitor for early signs of liver cancer as with cirrhosis and hep c we are at about a 20% risk of developing liver cancer although with cure of hep c while we will still have cirrhosis our risk of liver cancer is lessened.

I have those tests along with the regular liver enzyme tests and CBC as well as an annual upper EGD to monitor for reoccurrence of esophageal varicies.

Do you know your platelet count? Have you had those tests and immunizatuons? Are you seeing a hepatologist? Doy you have any symptoms of decompensation like ascities, varicies hepatic encephalopathy? Do you know your MELD score or your CHILD Pugh score?

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

http://www.mdcalc.com/child-pugh-score-cirrhosis-mortality/

Best of luck to you
Lynn
« Last Edit: November 20, 2016, 06:19:44 pm 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 Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #46 on: February 27, 2017, 01:34:40 pm »
Hi! It has been awhile since I posted but I just received my HepC  RNA viral load results after I complete my 12 week course of Harvoni.
Comments Note: At present there is no evidence of clinical relevance of " Target Not Detected" <15 IU/mL. Great news, doctor wants to retest me in one year to see if there are any changes. Best of luck to everyone.  Tug

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #47 on: February 27, 2017, 07:08:13 pm »
Hi Tug and congrats!

Was that your end of treatment your 12 weeks of treatment result (EOT)or your 12 weeks after you had completed treatment (SVR 12) result?

But either way congrats on finishing treatment and your not detected result!
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 andrew j

  • Member
  • Posts: 477
Re: Starting Harvoni
« Reply #48 on: February 28, 2017, 03:50:03 am »
Fantastic news, Tug!
Congrats!

... and best wishes of course,
A.

Offline Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #49 on: March 16, 2017, 05:55:08 pm »
Hi!  my SVR ( 12 ) results were: Specimen collected 12/01/17
AST: 25
ALT: 25
Alkaline Phosphatase: 92
Bilirubin Total : 10
Bilirubin Glucuronidated : 4
Albumin: 46
Leukocytes; Blood  4.0
Erythrocytes;Blood : 5.24
Hemoglobin;Blood : 156
Hematocrit; Blood: 0.45
Mean Corpuscular Volume;RBC  87
Mean Corpuscular Hemoglobin; RBC   29.8
Mean Corpuscular Hemoglobin Concentration RBC :  344
PLATELETS; Blood 168
Erythrocyte Distribution Width; RBC Neutrophils;Blood   2.6
Lymphocytes; Blood  0.9 ( Low)   Range ( 1.0 - 3.5 )
Monocytes;Blood   0.4
Eosinophils; Blood  0.1
Basophils; Blood   0.0

hope this is what you meant ..  heck of a time typing this ha!ha! 

My best whishes to everyone and a great 2017.   Tug

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting Harvoni
« Reply #50 on: March 17, 2017, 03:50:37 am »
I was asking are these your results from when you had just finished your treatment (EOT) or your results taken 12 weeks after your last dose of medication.

What day did you finish treatment.

Some folks are not always up on what is SVR 12 on occasion so was just checking to make sure we are on the same page

Edit: oops I guess it helps to scroll up duh. I see you finished treatment back in October.

Congrats again in your SVR12 and enjoy your free from hep c life!
« Last Edit: March 17, 2017, 05:29:41 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 Tug

  • Member
  • Posts: 19
Re: Starting Harvoni
« Reply #51 on: March 17, 2017, 08:37:49 am »
   Lynn:  I  will post back in a years time when I am tested again to compare these results.
                              Thanks Again  Tug

 


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