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Author Topic: Starting down the Harvoni road  (Read 18152 times)

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Offline straycat

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  • Posts: 24
Starting down the Harvoni road
« on: May 25, 2015, 07:50:12 pm »
Back last December or so I was conflicted about whether or not to pursue Harvoni treatment.  See post http://forums.hepmag.com/index.php?board=34.0  on 12/28/2014.  After much reading, talking, listening and contemplation I finally told my gastro that I wanted to to go for it  :D

Luckily for me, his office (Jessica) is taking care of wrangling with my ins (UHC) and will find funding to assist with my copays.  She says the process might take as long as 8 weeks, so I'm going on as normal until I get word.

If all goes according to plan I'll be on the 24 week regimen.  I'm hoping the side effects aren't too debilitating, but in any case I'm looking forward with optimism :D to be hep C free!
« Last Edit: May 25, 2015, 07:54:28 pm by straycat »
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Starting down the Harvoni road
« Reply #1 on: May 29, 2015, 02:09:17 am »
Congratulations, Straycat! I think you made the right choice. It will be worth it to be free of HCV.

best,
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

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Re: Starting down the Harvoni road
« Reply #2 on: May 29, 2015, 05:38:40 am »
Hi

I just recently finished 24 weeks of Harvoni and 15 weeks of Ribavirin. The only problems I had were from the Ribivirin which made me anemic but even with that I worked full time, took a college class and even took a 1 week trip to Italy.

I did have some occasional headaches when I first started Harvoni but if it was from the Harvoni or I just had a headache I couldn't say

Good luck on treatment
« Last Edit: May 29, 2015, 01:28:32 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 KimInTheForest

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Re: Starting down the Harvoni road
« Reply #3 on: May 29, 2015, 01:27:28 pm »
I am into Week 4 of 12 on Harvoni+Ribavirin. So far no significant side effects. Certainly nothing that has caused me any physical discomfort or stopped me from doing what I would normally do each day. So don't stress too much over anticipated sides @straycat. Just see what happens. There are ways to deal with any problems that might develop - often very simple ways like drinking more water, or switching from evenings to mornings for pill-taking. :)

Best,
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 straycat

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  • Posts: 24
Re: Starting down the Harvoni road
« Reply #4 on: May 29, 2015, 05:55:25 pm »
Thanks for the encouragement and positive feedback, Kim and Lynn.   Thankfully I don't have to take the Ribavirin - I'm so glad your sides are minimal  :) 

I'm looking forward to getting this show on the road - I never have been good at waiting around once my mind is made up to take action on something.  Another lesson in patience, I guess LOL
« Last Edit: May 29, 2015, 05:57:57 pm by straycat »
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline Penniann

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  • Posts: 7
Re: Starting down the Harvoni road
« Reply #5 on: June 03, 2015, 01:32:28 am »
Hi. I will be starting Harvoni next Monday. I will probably be in this forum every day.

I hope you do very well, and always feel good about coming to this forum. We all need to stick together.  :)

Offline straycat

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  • Posts: 24
Re: Starting down the Harvoni road
« Reply #6 on: June 03, 2015, 06:28:40 pm »
Thanks for the encouragement, Penniann.  I'm sure to see you either in this area or in one of the other areas around here.  I had my Fibrosure test done today; can't wait to hear the results since the only other time I've been directly tested for cirrhosis was way back in '94 when I was first diagnosed.  I'm so glad it can be done via blood test rather than biopsy!
GT 1b Fibrosis Stage 4
NAG Significant activity (inflammation score)
VL  2,880,000 IU/ml pre-tx
1970ish nonA-nonB hep, dx HCV 1994
IFN failed - autoimmune response
Started Harvoni (24 wks) 7/25/2015
VL 8/25/15  zero virus detected
AST/ALT 27/24
VL zero 1/2016 post-tx

Offline Penniann

  • Member
  • Posts: 7
Re: Starting down the Harvoni road
« Reply #7 on: June 05, 2015, 10:26:21 pm »
 :) Hi Again. I picked up the Harvoni at the pharmacy today. My appointment in GI is Monday at 9 am. I'm starting the count-down until it's time to start the first pill on Monday. The pharmacist advised to me to just take it and not think about it. She also told me it's a good medication. I'm not saying that just because she said this, that it makes it true, lol. I don't feel anxious about it so far.

I hope everyone has a great weekend.

Offline KimInTheForest

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Re: Starting down the Harvoni road
« Reply #8 on: June 05, 2015, 11:59:48 pm »
Congrats Penniann! Most people have an easy go of Harvoni alone. I am into Week 5 of Harvoni+Ribavirin, and even that has been pretty much smooth sailing so far. I had 3 days earlier this week of tiredness & fatigue. But I think that is due to me not eating enough, as much as it may be due to the Riba-anemia. One of these drugs (and I don't know which) is having an appetite suppressing effect on me. I have to work very actively all day and evening to keep food going into me, otherwise I wouldn't eat anything at all right now. But I think I have the appetite thing sorted out of now for my remaining 7.5 weeks of treatment. Already my energy level is back.

best to you!
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 kittypurr222

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  • Posts: 16
Re: Starting down the Harvoni road
« Reply #9 on: June 06, 2015, 06:47:23 pm »
Back last December or so I was conflicted about whether or not to pursue Harvoni treatment.  See

If all goes according to plan I'll be on the 24 week regimen.  I'm hoping the side effects aren't too debilitating, but in any case I'm looking forward with optimism :D to be hep C free!
I am trying to figure out how to put in a post to reply. What do I click on?

Offline Peachy

  • Newbie
  • Posts: 1
Re: Starting down the Harvoni road
« Reply #10 on: June 11, 2015, 05:14:30 pm »
I have been on Harvoni for 6 days with no side effects.

Offline lolacme

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  • Posts: 55
Re: Starting down the Harvoni road
« Reply #11 on: June 11, 2015, 07:32:58 pm »
Hello everyone,

I feel as if you all are my kindered spirits. Hepatitis C can be such a lonely experience. My Harvoni is expected in the mail tomorrow. I am a little anxious to start. I had interferon induced psychosis on treatment before and ever since then I have been afraid of how medications will affect me. Best of luck to all of you.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Starting down the Harvoni road
« Reply #12 on: June 11, 2015, 09:11:05 pm »
@lolacme & @Peachy: Welcome! And congrats on starting (or soon to start) Harvoni! :) 

lolacme, i don't think you will have any sort of psychosis issues on harvoni. Most people seem to have a very easy time with harvoni.

peachy, that's great that you've got no sides so far. Keep up the good work.

I am into Week 6 of 12 of Harvoni+Ribavirin, and no real problems - nothing that is causing me any discomfort. I became undetectable (in terms of virus) at end of Week 4, which is typical for Harvoni, although everyone is different, and the only number that really matters is whether you are undetectable 12 weeks after end of treatment.

best to both of you,
kim :)
« Last Edit: June 12, 2015, 02:51:19 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 Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting down the Harvoni road
« Reply #13 on: June 12, 2015, 02:05:05 am »
I am trying to figure out how to put in a post to reply. What do I click on?

You just did post a reply
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 Penniann

  • Member
  • Posts: 7
Re: Starting down the Harvoni road
« Reply #14 on: June 16, 2015, 07:14:59 pm »
Hi Again. I'm on day #9 of Harvoni today. I wanted to say something to Lolacme. I have had an anxiety disorder since the 1980s. It has been in remission for a few years. I was kind of worried if the Harvoni would bring the anxiety back. Well, it did not. After day #1, I realized I wasn't going to freak out, lol. I got very sleepy and felt sedated the first week. This week I have been at work and feeling almost ok. After work I don't just land somewhere and stay there when I get home. I feel that I'm doing great this week so far. I'm thinking that I'm going to get used to being on this medication, and it will feel normal until I reach the end of treatment. So far, I am at peace.

I hope everyone else is doing good too.   :)

Offline Penniann

  • Member
  • Posts: 7
Re: Starting down the Harvoni road
« Reply #15 on: June 16, 2015, 07:25:14 pm »
I would also like to add that before I started the Harvoni treatment I felt sick every day like I had absolutely no energy. The smell of food made me feel sick for the last couple of years. I still managed to pig out at times though, lol. I also had body aches every day. I don't know if it's all in my head or not, but I actually think that I feel better than I did before I started the Harvoni treatment, and I'm only on week two.

Offline lolacme

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  • Posts: 55
Re: Starting down the Harvoni road
« Reply #16 on: June 17, 2015, 02:58:44 pm »
Hello kindered spirits. I just took my 5th dose of Harvoni and so far okay except for some minor leg pain and a stinging sensation under my skin. Does anyone else think it is weird that my DR. does not want to test my viral load until week 12. He explains that insurance companies sometimes make up the rules as they go and he does not want them refusing my script partially through. For instance, if I was not responding as they saw fit or something. I have seen on here where some folks have had their treatment extended based on lab work though..I got a pre authorizaton for 12 weeks of Harvoni so I am thinking I need to discuss this with my doc. 2.5 years ago I was F3 grade 2 so almost cirrhosis. Hope all of you are well.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline Lynn K

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  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting down the Harvoni road
« Reply #17 on: June 17, 2015, 03:39:58 pm »
Really the only test that matters is the 12 week post treatment test. The tests on treatment don't mean very much and if the person is weakly detected can cause unnecessary stress for them.

In the past with the old interferon treatments it was response guided to see if patients were responding and if not responding they would stop treatment.

The new treatments are not response guided so the patient will continue till treatment end.

From what I have seen here is everyone has either been not detected or weakly detected less than 15. So testing on treatment really does not provide any useful information.

Good luck hope you make 12 week post SVR
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 lolacme

  • Member
  • Posts: 55
Re: Starting down the Harvoni road
« Reply #18 on: June 20, 2015, 06:43:34 pm »
Just started my second week of Harvoni and no problems. I feel good. I have decided that I do not trust my F3 status and believe I could easily be F4. It has been 2.5 years since last biopsy and I could have easily changed. I wish I had demanded some kind of staging before we started Harvoni monotherapy. I am going to ask my Dr. next week if we can add Ribaviran for the remainder of the treatment. I think it will increase my chances of SVR. Not excited about the Ribaviran side effects since they were so severe last time but I do not think my mind will rest easy unless I give it a try.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Starting down the Harvoni road
« Reply #19 on: June 21, 2015, 06:56:19 pm »
Hi lolacme

How many weeks of Harvoni will you be taking?

Good luck on treatment
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 lolacme

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Re: Starting down the Harvoni road
« Reply #20 on: June 21, 2015, 08:15:20 pm »
hey Lynn,
I am scheduled for 12 weeks of Harvoni. I doubt I can get 24 weeks approved. I read a study on here that 12 weeks of Harvoni is almost as effective as 24 weeks on Harvoni monotherapy. 96% versus 97%.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

 


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