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Author Topic: 4 Month Check-up  (Read 40414 times)

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Offline Rich1957

  • Member
  • Posts: 64
4 Month Check-up
« on: November 17, 2014, 07:13:14 pm »
Don't know what to do. I started treatment in May of this year, after 30 days my viral load went from 3.3 mil to 38 ,after 60 days went to undetectable. I just went to get tested at 4 months post treatment and it came back 6.69 mil, is this even possible?????? Talk about a surprise. 4 months from nothing to 6.69 mil????
Fred

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: 4 Month Check-up
« Reply #1 on: November 18, 2014, 06:43:05 am »
Hi Rich,

First off, I am sorry the beast wasn't completely gone and sending you a big hug. All it takes from what I understand is one teeny tiny minuscule molecule of the virus that even blood work can't find for it to start replicating itself again. That's everyone's fear when we hear we are ND and virus free and it's exactly why no one actually wants to say they are cured until 6 months post treatment.

I am fairly new to this myself but am digging in with both feet. I don't know about your specifics with Hep c but Harvoni came out a few weeks ago and I have heard it's had amazing results and in about another month or so the AbbieV drug is expected to be approved.  I myself am on S/O for 12 weeks, 5 + weeks in now and UD but bloodwork says the dreaded < 15 which I've been told means it can't find it but won't say it's gone.

Give your doctor a call and see what he/she recommends as your next step. Let us know what's going on and what they recommend for your next course of action. I think a few of us are going to be in your boat soon and the more information we can share they better for all of us.

You will beat this beast, you will win the battle!

~Mel~
« Last Edit: November 18, 2014, 06:45:38 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Bucky

  • Member
  • Posts: 341
Re: 4 Month Check-up
« Reply #2 on: November 18, 2014, 08:59:26 am »
Don't know what to do. I started treatment in May of this year, after 30 days my viral load went from 3.3 mil to 38 ,after 60 days went to undetectable. I just went to get tested at 4 months post treatment and it came back 6.69 mil, is this even possible?????? Talk about a surprise. 4 months from nothing to 6.69 mil????

Rich1957,
Yes, very possible as you see. Some say that SVR12 is cured and others including one of the moderators made his declaration after SVR24. If I remain UD at 24 weeks post treatment then I will consider myself cured.
I see that you were treated with  sov & rib and did not use Olysio. Omitting the Olysio gives you a another option and it should make it easier to be approves for Harvoni (contains a PI similar to Oylsio), or the AbbV 3D.
Viral # doesn't mean a lot except when you are UD to verify that you have beat this.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Bucky

  • Member
  • Posts: 341
Re: 4 Month Check-up
« Reply #3 on: November 18, 2014, 09:01:57 am »
Rich1957,
Yes, very possible as you see. Some say that SVR12 is cured and others including one of the moderators made his declaration after SVR24. If I remain UD at 24 weeks post treatment then I will consider myself cured.
I see that you were treated with  sov & rib and did not use Olysio. Omitting the Olysio gives you a another option and it should make it easier to be approves for Harvoni (contains a PI similar to Oylsio), or the AbbV 3D.
Viral # doesn't mean a lot except when you are UD to verify that you have beat this.
Bucky

Forgot to add that you liver did get a break from the dragon and that is good.
Bucky
« Last Edit: November 18, 2014, 09:04:07 am by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: 4 Month Check-up
« Reply #4 on: November 18, 2014, 05:53:28 pm »
Rich,
I'm finishing up the same treatment as you. 24 weeks. Your the 3rd on this forum that it has failed. I am a different Genotype, 1b--yours is different and the others were different. it is a bitch to go thru this and not get the results desired. The doctors had an alternative for the then off-label Olysio. Mine did not want to "offend" the insurance and have to do extra appeals on his patient's behalf.
I tell you, I am not a happy camper to here this news, as you did what you were asked with high hopes, and then this shit happens. My Doctor was just lazy.
I am doing extra steps to get my immune system aggressive after I stop treatment cause I do not want to go thru this again, and I don't want to visit any dammed doctor for hepc anymore.

Offline Mike

  • Member
  • Posts: 999
Re: 4 Month Check-up
« Reply #5 on: November 18, 2014, 07:57:38 pm »
Rich,

I'm so sorry to hear this, and I know I can't say much that will help with the emotions you must be feeling.

Remember this, however: There are a lot of new treatments in the works, which will be available in the very near future.

You'll beat this!

Best, best, wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #6 on: December 06, 2014, 01:06:28 am »
Mike just want to thank you for the encouragement. Been studying everything I can to understand why. Just like when you work on a car very often we treat the symtoms not the problem. Since I've tested positive again everything in my body seems to be off. I've developed a staph infection that doesn't want to clear, have trouble breathing ,feeling lazy and ill, not the real me. I moved to TN and became involved with someone now I worry about infecting them , the last thing in the world i want to do. Have'nt gotten an appt with the gi doc yet. Guess it is more important to me than them. Things just don't seem to make sense, I need more answers, and I will find them. Thanks again, Will have to change from post to pre and start all over again. The only thing i'm not is depressed, just determined. Signing off for now.
Fred

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #7 on: December 06, 2014, 01:51:25 am »
Hi Rich1957 aka Fred
Sorry to here of your relapse. I am genotype 1a and treated with Sovaldi Olysio for 12 weeks back in March to June for 12 weeks but the new recommendation for cirrhosis I guess is 24 weeks so any way I relapsed at my 12 week post test. I remember wondering as well what could I have done differently but I guess that is yesterday's news now.

I read some of your old posts I see you are genotype 2 but I don't see that you know your fibrosis level. Maybe that had some part in your results I do see that people with cirrhosis and genotype 2 only had an 83% SVR rate.

Also someone mentioned Harvoni but right now that is only for genotype 1 patients. I am on day 18 of Harvoni retreating.

What does your doctor recommend the next step is?

Wishing you the best
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 Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #8 on: December 06, 2014, 02:24:16 am »
Lynn,  Thanks for your reply.I only had a ultrasound on my liver and they said there was no sign of any damage. Does'nt mean that there wasn't any. The blood tests showed normal liver and kidney function. Been trying to get into see the gastroligist that I was referred to it's been almost a month and no appt. When I was tested first part of Nov, all numbers were good but cholesterol jumped . Been woking on a house with a bad mold infestation, that might be causing some of the new symtoms. I just need to know. When diagnosed they said I was a symatic, no other signs of damage even though I may have been infected for many yrs. They thought sol/ rib for 12 would do it. Never thought it would come back with such vengence. Just need some answers, will feel better when I see the new doc. They are treating everything else with anti biotics and steroids, don't like this course of action, it's like we don't know so we will treat everything. Hope the new treatment works for you. Been fighting the fight long, do you know how and when it all started? Wishing you the best,
Fred

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #9 on: December 06, 2014, 02:36:53 am »
Hi Fred
I imagine I became infected in either 1978 when I got a tattoo in a GI hang out bar in Germany when I was stationed there from 77-80. Or the more likely reason I was a wild one back in the day and tried drugs all of 3 times but that was likely all it took. I am still crazy but not that crazy just youthful experimentation. So it is what it is.....

Treated 3 times with the old interferon based treatments and diagnosed with cirrhosis in Jan 2008. Before I was diagnosed with cirrhosis and for a couple of years after I had no symptoms either. And my liver functions have been only slightly elevated for many years just barely above normal.

Hope your doctor gets your symptoms sorted out and you feel better soon
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 Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #10 on: December 06, 2014, 02:47:52 am »
Wish I could say that someone did this to me , but I was no angel for many yrs. My wife passed away when her liver failed. Just two yrs ago. Say how she went wasn't nice. It's also been yrs since I've done anything to but me at risk. But like you said only takes once. I'm sure it can be eradicated but worry about long lasting side affects. When i was young never planned on living past 30, now that I have some yrs on me want a little more , ya know.
Fred

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #11 on: December 06, 2014, 03:15:00 am »
Sorry to hear about your wife I have heard cirrhosis is not a way you want to leave this place not an easy way to go.

As far as after effects I don't expect any but guess I will find out when I get there but really what other choice is there? And anyway "Worry never robs tomorrow of its sorrow, it only saps today of its joy" so worry does no good anyway. Not useful, not helpful.

You and I aren't going anywhere any time soon don't you know only the good die young so that is why we are still here lol

Best to you
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 Mike

  • Member
  • Posts: 999
Re: 4 Month Check-up
« Reply #12 on: December 06, 2014, 09:28:51 am »
Hi Fred,

I failed treatment the first time around and was warehoused for 14 years until the next generation of drugs were available. There are currently a lot of things in the works and new treatments coming out next year (which is only a month away).

You'll beat this dragon for sure.

On another note, house molds can cost significant health issues and might be the cause of some of the things going on:

Here's a list of symptoms:

Mental and neurological symptoms
Respiratory symptoms
Circulatory symptoms
Vision and eye problems
Skin problems
Immune system problems
Reproductive system problems
Tiredness and discomfort

Be careful with the stuff.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: 4 Month Check-up
« Reply #13 on: December 11, 2014, 01:06:31 pm »
FRED.....Dam, I'm sorry to hear your news.    I've been there my friend and I know firsthand the disappointment.   But we keep trying just like you are.     I was cleared for 9 months and it came back.               I'm gonna be sending you lots of prayers and positive thoughts.   Also, so sorry about your wife.
  Please keep us posted.       that is so puzzling though how your numbers came back so frikking high.    geez!   I'll be watching for your posts.        This is my 3rd try to beat this.   

Best wishes to you for sure!  Jill

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: 4 Month Check-up
« Reply #14 on: December 23, 2014, 08:36:38 am »
Hi Fred,

Just wondering how you are doing and if you got into a new Dr to help you. I hope you are on a new treatment by now.

Happy Holidays,

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #15 on: December 23, 2014, 09:18:09 am »
Mel  By  coincidence the dr. office called yesterday and had an opening today at 2:30. Can't wait to find out what is going on. Been feeling like crap lately. I've been getting every bug in the wind, turning into a germaphobe. Can't wait to get a little bit healthier. Really thought I had this thing licked, guess it had a different idea. Been down but going with the flow. I know I will eventually get there, hope it's before there is to much more damage to my liver. Hope this Dr knows his shit. Hate when you talk to them and you are more versed then they are. Well that's enough griping for know. Will update when I get more info on what they want to do. Thanks to all that care, and hope the best for everyone.   Merry Christmas
Fred

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: 4 Month Check-up
« Reply #16 on: December 23, 2014, 09:46:59 am »
Hi Fred,

Sorry you are feeling crappy but happy that you can get into the doctor today before the holiday. I hope they have a plan for you and can get you started quickly!

If there is anything I can do let me know, always around to listen if you need an ear,

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #17 on: January 01, 2015, 03:56:31 pm »
Sorry to hear about the relapse…..please keep us posted.  I am also in Tennessee and am very interested in knowing what your doctors assessment is and the next course since you are also G2.  I will not have my three month check until end of February and get quite nervous when I hear news like this.  I started out with a 3.2 million VL.

Offline Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #18 on: March 14, 2015, 04:25:33 am »
 :-\ Well it is March 14th , the insurance turned me down for Harvoni, said since I was gen 2b said that it wasn't for me. Waiting on the appeal for 16 wks. of sovaldi/ rib treatment, did 12 wks. about a year ago, but it came back with a vengence. I've had hep-c for 25 yrs. The viral load was 3.3 mil before treatment in 2014, went to ud then at my 4 month blood work it went to 6.9 mil. I've been waiting on the insurance co. ever since. Should find out soon. Got my fingers crossed. Love reading about all the people that are getting cured, gives me hope. Praying for everyone, we all deserve to be hep-c free. Want to get on with my life.
Fred

Offline Sam1224

  • Member
  • Posts: 62
Re: 4 Month Check-up
« Reply #19 on: March 14, 2015, 10:03:38 am »
What TX is showing the best results for gen 2? Anyone?

Offline Rich1957

  • Member
  • Posts: 64
Re: 4 Month Check-up
« Reply #20 on: March 14, 2015, 10:34:28 am »
The Doc says it's the sovaldi/ ribovarin for gen 2 and harvoni for gen 1. But I don't trust them much.
Fred

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #21 on: March 15, 2015, 07:33:11 am »
The American Association for the Study of Liver Diseases (AASLD) Recommendations for Testing, Managing, and Treating Hepatitis C

http://www.hcvguidelines.org/full-report-view

Initial Treatment Box. Summary of Recommendations for Patients Who are Initiating Therapy for HCV Infection by HCV Genotype

http://www.hcvguidelines.org/full-report/initial-treatment-box-summary-recommendations-patients-who-are-initiating-therapy-hcv


state as follows:

"Recommended regimen for treatment-naive patients with HCV genotype 2 infection.
Daily sofosbuvir (400 mg) and weight-based RBV (1000 mg [<75 kg] to 1200 mg [>75 kg]) for 12 weeks is recommended for treatment-naive patients with HCV genotype 2 infection."


Per the prescribing information sheet for Harvoni currently Harvoni is only approved by the FDA for the treatment of Genotype 1 regardless of subtype A or B

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

"INDICATIONS AND USAGE

HARVONI is indicated for the treatment of chronic hepatitis C (CHC) genotype 1 infection in adults."

So unless prescribed off label or in a clinical trial, Harvoni is not for Genotype 2

The reason this is the treatment for genotype 2 come from the Valence clinical trial results of 97% SVR in patients in that trial for treatment naive genotype 2 without cirrhosis

 http://depts.washington.edu/hepstudy/presentations/uploads/93/valence.pdf

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 Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #22 on: March 15, 2015, 02:48:36 pm »
Got my 13 week post treatment results and all blood work excellent and still Undetectable for hcv.  Dr also told me that there were new drugs down the pike that treats all genotypes cross the board, so that means even the geno 2s like me will have an alternative if needed.  I read same thing in my research.
Not sure why some relapse and others do not, if genetics or other health factors as I have had hcv since the early 70s when I contracted hbv and hcv at same time.  Cleared the hep b but not the nonAnonB at the time.  Ended up with antibodies for both and surface antigens for the hepc. 
I can feel the difference these days, feel healthier and more resilient for sure………….still have bouts with skin - histamines going crazy it seems…..am positive that will resolve in time.

Offline JillLynn

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  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: 4 Month Check-up
« Reply #23 on: March 17, 2015, 09:36:46 am »
Tess.

that is wonderful news!     Congratulations!      BIG HUG!

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: 4 Month Check-up
« Reply #24 on: March 17, 2015, 11:44:07 am »
Rich1957
You will get a chance again, wait for whats coming.
 Tess1971
Good news---I'm hanging on for my 6 month post testing in June. With our treatments
6 month should be the defining moment.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #25 on: March 17, 2015, 02:52:49 pm »
Thankyou Thankyou Thankyou   My next VL test will not be for 6 mos unless I want to do it earlier.  I will have to think on that for sure.  I asked about that when I saw dr and he said in his experience that after a year relapse is pretty much non existent and extremely low if not detected  after three or six months.  This is a big thing for me to swallow after all these years.  I do feel different, almost lighter in a way even mentally.  Like I said previously only issue is the histamine problems, seems I have allergy reactions now that I did not have before.  I feel like  my immune system is souped up now as it does not have the virus to keep it busy like it did for decades…..hahaha  Allergies are immune responses so it makes sense. That includes the skin too.

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #26 on: March 17, 2015, 02:58:51 pm »
Rich1957, did you say you did sovaldi and ribavirin for 12 weeks a year ago?  If so, were you UD at all post treatment?

Offline Rich1957

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  • Posts: 64
Re: 4 Month Check-up
« Reply #27 on: March 17, 2015, 05:38:01 pm »
I was und at 4 wks during treatment, also 8 wks, and 12 wks. Then at 4 months post treatment my viral load went to 6.9 mil. When I originally started treatment my load was 3.5 mil. Yes I took the sov/ rib combo for 12 wks. I finished treatment on july 8th of 2014.
Fred

Offline Rich1957

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  • Posts: 64
Re: 4 Month Check-up
« Reply #28 on: March 17, 2015, 05:43:40 pm »
Tess what kind of skin problems did you experience? I had problems with a rash and a staph infection, never in my life had I had any kind of skin problems.
Fred

Offline Tess1971

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  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #29 on: March 17, 2015, 05:56:04 pm »
Rich I had itching everywhere and rashes cropping up on my legs and arms that looked almost like hives or prickly heat.  Even my back got bumpy and itched and still does and I rarely got rashes unless I got into stuff like poison ivy.  That is what I thought I did at first it was so bad at one point.  I am still having skin flair ups now especially when outside as I  am in the country and do yard work on a off.  If this continues it is gonna be a rough summer.  Never had all these allergy symptoms and I have lived here for decades even though I originated from the big Apple.
I wonder why the sovaldi and ribavirin did not work for you………..are you cirrhotic?  or taking another medication that may have interfered?  I always want to learn from others first hand since all the info we and our doctors rely on is from studies and pharmaceuticals and not real world info from the actual people.

Offline Rich1957

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  • Posts: 64
Re: 4 Month Check-up
« Reply #30 on: March 17, 2015, 06:08:29 pm »
Tess no I don't take any meds. And no they did a ultra sound and said that my liver looks great, also my blood work is really good. No signs of cirrhosis yet. The only thing I changed is I moved to TN. in July of last year, from Oh.
Fred

Offline Tess1971

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  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #31 on: March 17, 2015, 07:26:23 pm »
Wow Rich I'm in Tn also………..I guess I need to be vigilant until the next blood work as this last one was 13 weeks post treatment.  I finished tx 11/15/14.  Did your dr speculate as to why the sov/riba did not take.  I had a VL like yours and had it for decades.  It used to fluctuate  but was always high.  Only time it was in the thousands is when I was in my 30s and that was sometime ago - ha!  ;D

Offline Rich1957

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Re: 4 Month Check-up
« Reply #32 on: March 17, 2015, 10:49:05 pm »
Tess I have changed docs. since moving to TN. The doc here is a little inexperienced I think.I asked many questions about why  and nothing. The only thing I can find is I was taking antacids with my meds, and now I read that maybe a no no. But still the meds worked, but maybe not good enough. That still doesn't explain the higher numbers post treatment. It's been two weeks since they supposedly filed my apppeal and nothing yet. I should have filed for myself. Hope everything works out for you. Tired of being tired. Your not in Eastern TN. are you? 
Fred

Offline Tpropane

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  • Heal the past by living in the present.
Re: 4 Month Check-up
« Reply #33 on: March 18, 2015, 03:48:50 am »
Antacids are about the the only contraindicated drug on the list. They are a huge no- no. I hope that you can start over. With health and knowledge and the hope and love of all of us with you and pulling for you. 24 weeks of Harvoni. No antacids! I can't believe that they didn't tell you that...Your story freaks us all out.
You also need a fibroscan or biopsy to know the exact status of your liver now, and maybe a better doctor. You have to be your own boss and know this stuff yourself and ask for it. My doc did't know gilead recommended 24 weeks. I read the 32 page PDF on their website. It is your health. You want it. Go get it. Live it. BE YOUR OWN ADVOCATE>
Bring it Bitch! HCV. I've got you.
TPROPANE
Hep C 1A / TT diagnosed 2009
Non Responder Boceprevir/riba/peg 2011
F-4 Cirrhosis
TX Harvoni 24 weeks started 1/20/15
2 week labs VL 174!
4 week labs UNDETECTED !
8 week labs UNDETECTED !

Offline Rich1957

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Re: 4 Month Check-up
« Reply #34 on: March 18, 2015, 04:16:38 am »
When my doc asked if I took any medication I told him I only take antacids and he never said anything about it. I feel so stupid know. I also read the info on the Gilead site that is where I found the info on the antacids. Expensive mistake. I guess you live and learn. I felt that I had researched alot about the meds and side affects to your body but since I was not on any other meds I wasn't looking for any interactions.
Fred

Offline Tess1971

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  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #35 on: March 18, 2015, 11:27:37 am »
The specialty pharm I got the meds from sent me an entire pamphlet full of stuff re the meds and also enclosed all of Gileads inserts with the studies and contraindications.  Even antibiotics can have an effect  so I literally took nothing during treatment but an occasional vitamin and I mean occasional.  I even stopped the diuretic I was taking for bp since it made me too dehydrated.  Seems now I no longer need it as my bp is staying normal.
Rich, I am in middle tennessee outside of Nashville.  Doctor (gastro) I have is okay, but, I got more feedback from the specialty pharm who actually was available by phone 24/7 and seemed more informed than doctors.

Offline Lynn K

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Re: 4 Month Check-up
« Reply #36 on: March 20, 2015, 07:08:25 pm »
The antacid concern is only for Harvoni because the Ledipasvir component of Harvoni requires a normal stomach acid environment. Rich1957 was on Sovaldi Ribavirin and there is no requirement to avoid antacids.

Drugs specifically listed on the prescribing info sheet for Sovaldi are Rifampin and St. John’s wort should not be used with SOVALDI

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf


Also Rich is GT 2b and Harvoni is currently only for GT 1.

So sorry to hear Rich I hope they have new options for you soon.
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 Rich1957

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Re: 4 Month Check-up
« Reply #37 on: March 21, 2015, 05:36:03 pm »
Here we go again. I got my approval for 16 weeks of sovaldi today. Just need to apply for a grant to help with my deductible. Got my fingers crossed that this will work this time. Best wishes to all trying to beat this. You are all in my prayers.
Fred

Offline Bituman

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Re: 4 Month Check-up
« Reply #38 on: March 21, 2015, 09:51:01 pm »
Rich I really admire your fortitude in going through all this.  Good luck with the Sovaldi.  I'm so glad you have that option and that your liver remains in good condition.  Best wishes to YOU! 

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Rich1957

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Re: 4 Month Check-up
« Reply #39 on: March 24, 2015, 12:31:20 pm »
Today is a great day. Just got off the phone with the pharmacy.  I start my sov/rib on the 1st of April. 16 wks. Got my grant to cover almost 10000 in deductible charges on my insurance. Life is good. It will be almost a yr. from when I finished treatment last yr. Hope it works this time. Prayers to everyone.
Fred

Offline rgr

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Re: 4 Month Check-up
« Reply #40 on: March 24, 2015, 09:01:42 pm »
Great news Rich1957!

Keep the faith! You win this time.
Geno> 1a, Stage 3 fibrosis, Started 12 week Tx January 2015, VL 15 Million.

Offline Katie

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Re: 4 Month Check-up
« Reply #41 on: March 28, 2015, 09:36:54 pm »
Good luck Rich!  Hope all goes well and hope you read Lynn's post on the antacids so you can stop beating yourself up on that!  It only affects Harvoni!

Keep us posted how you are doing.  We are all sending you {{{{HUIGS}}}} and good wishes!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Islandgirl

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  • Started Harvoni 12/3/14 - EOT 2/25/15
Re: 4 Month Check-up
« Reply #42 on: March 29, 2015, 09:04:17 am »
More hugs and good wishes from me too, Rich! 

Like you, I was able to get a grant to help with the copay - what a blessing!  Prayers, positive healing energy, and cyberhugs :) are headed your way - ....Islandgirl 8)
1b, treatment naive, positive for Hep C since 1994; thought to be transmitted via blood transfusions in 1976
Started Harvoni 12/3/14, EOT 2/25/15
12/31/14 labs - Virus Undetected, ALT/18, AST/34
3/25/15 labs - 1 mo post 12 wk Harvoni TX Virus Undetected!!  :) ....Islandgirl

Offline Rich1957

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Re: 4 Month Check-up
« Reply #43 on: April 29, 2015, 12:58:12 pm »
Went to the Dr today to get my first bloodwork done. Yesterday was 28 days into treatment. They said that no one else gets bloodwork during treatment???? I'm having second thoughts about this Dr. Thought it was standard practice to at least check the viral load during treatment to find out how the meds are working????? I don't know,  I'm just glad I am being treated again. Wonder how many hep-c patients  this Dr is treating???? Well anyway everyone is in my prayers,  I  hope everyone gets the treatment they need.
Fred

Offline Tess1971

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  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: 4 Month Check-up
« Reply #44 on: April 29, 2015, 01:17:25 pm »
Rich I never got tested during treatment either, only for anemia related, kidney and liver functions - no viral loads.  Some doctors reasoning is they want to continue treatment all the way no matter the results.  Some insurances may not renew if it did not appear working enough for them and it can also affect adherence of some patients.  This is one of the explanations I received at the time.

Offline JillLynn

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  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: 4 Month Check-up
« Reply #45 on: April 30, 2015, 09:27:24 am »
rootin' for you Rich!

Best of luck with your new treatment!


Jill

Offline dragonslayer

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Re: 4 Month Check-up
« Reply #46 on: April 30, 2015, 09:36:25 am »
Because Harvoni treatment doesnt generally call for response guided treatment such as the older treatments did, there isnt a whole lot of purpose in doing on treatment viral loads.  Plus which, numbers derived therein dont correlate well with SVR, so what's the point?  For folks with severe liver damage and failed prior treatments, exceptions are sometimes made.

Good Luck Rich!!!
« Last Edit: April 30, 2015, 01:45:32 pm by dragonslayer »
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 Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #47 on: April 30, 2015, 08:12:50 pm »
Even as a multiple treatment failure with cirrhosis (I am treating for 24 weeks) there would still be little reason to check for viral load.

The only test that is for all the marbles is the 12 week post treatment.

All on treatment viral load tests do is either make us the patient feel good if not detected or if not totally not detected at week 4 make us worry needlessly.

I know it is exciting to see not detected at week 4 or whenever but it means nothing in relation to SVR.
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 Rich1957

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  • Posts: 64
Re: 4 Month Check-up
« Reply #48 on: May 11, 2015, 10:40:09 am »
Just got my bloodwork back from my first 28 days on sov./ rib. treatment. this is my second time in the last yr. the viral load is undetectable and alt. / ast are 11 / 18. Guess I could not ask for any better results than that. now need to get to my svr at 6 months post treatment. Have my fingers crossed. Hope everyone who is burdened with this gets what they want and need . Thanks for all the feedback and support.
Fred

Offline FutureThinker

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  • Onward and upward!
Re: 4 Month Check-up
« Reply #49 on: May 11, 2015, 01:10:08 pm »
Another member who's relapsed on Harvoni is Johnny_Wayne -- look under "Another Harvoni Failure" topic.
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

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  • Get tested, get treated, get cured, fight Hep c!
Re: 4 Month Check-up
« Reply #50 on: May 12, 2015, 01:36:37 am »
Got my EOT viral load back hep c not detected.

Been down this road before
Not counting my chickens just yet
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 Katie

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Re: 4 Month Check-up
« Reply #51 on: May 12, 2015, 03:28:19 am »
YAY Lynn!  Now the wait is on, but this is YOUR TIME, girlfriend!   :D
« Last Edit: May 12, 2015, 04:30:31 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline terih

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Re: 4 Month Check-up
« Reply #52 on: May 12, 2015, 10:59:19 am »
Lynn, Great news! I'm hoping for more great news for you whenever your next viral load test happens!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Bob V

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  • Posts: 231
Re: 4 Month Check-up
« Reply #53 on: May 12, 2015, 12:19:05 pm »
I do my 12wk post tx labs on the May 27. I've kinda blocked it out of my mind since I received the EOT labs. I needed to take a break from thinking about this 24/7 and get back to living life. Now that I'm two weeks out I'm back to thinking about it.
Male 64
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m (pre tx)
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014 (12wks)
Finished Harvoni  3/1/15
5wk lab detected <15
8wk lab UND
EOT lab UND!
12wk post lab UND!
24wk post lab UND!
58wk post lab UND!

Offline FutureThinker

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  • Onward and upward!
Re: 4 Month Check-up
« Reply #54 on: May 12, 2015, 04:05:07 pm »
Lynn, I'm doing the happy dance for you!!
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 dragonslayer

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Re: 4 Month Check-up
« Reply #55 on: May 12, 2015, 04:08:29 pm »
Got my EOT viral load back hep c not detected.

Been down this road before
Not counting my chickens just yet

Congrats, so far, Lynn.. If anybody deserves some good news around here, its you, for all youve gone through with prior treatments.  I know everybody is really pulling for you especially hard.
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 Bob V

  • Member
  • Posts: 231
Re: 4 Month Check-up
« Reply #56 on: May 12, 2015, 04:33:30 pm »
Got my EOT viral load back hep c not detected.

Been down this road before
Not counting my chickens just yet
--------
Congrats LynnK but I'm with you on this. Good luck.

BTW hi :)
Male 64
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m (pre tx)
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014 (12wks)
Finished Harvoni  3/1/15
5wk lab detected <15
8wk lab UND
EOT lab UND!
12wk post lab UND!
24wk post lab UND!
58wk post lab UND!

Offline Katie

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  • Posts: 784
Re: 4 Month Check-up
« Reply #57 on: May 12, 2015, 04:42:49 pm »
Hey Bob, it's not over 'till it's over but that is a BIG step in the right direction!  Great news and I am happy for you!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Bob V

  • Member
  • Posts: 231
Re: 4 Month Check-up
« Reply #58 on: May 12, 2015, 09:42:57 pm »
Hi Katie :)

Male 64
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m (pre tx)
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014 (12wks)
Finished Harvoni  3/1/15
5wk lab detected <15
8wk lab UND
EOT lab UND!
12wk post lab UND!
24wk post lab UND!
58wk post lab UND!

 


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