Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Lil started Harvoni this evening.


Member

Status: Offline
Posts: 28
Date:
Lil started Harvoni this evening.
Permalink  
 


Late to the party as usual - but congrats Lilbrownie, hope it all goes well for you from now on! xxx

__________________

58 y.o, diagnosed on chemo - resolved B, chronic C (3a).  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019.  Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb 

 



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

def a round of applause for the great ppl that made the daa's possible



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

Technically NO ONE is allowed to celebrate until SVR12 and beyond, but to heck with that, anyone who crashes as stupendously as you have, both in VL and LFT's, it's a done deal - you can celebrate! I am, even if you are not! I am super pleased with your crashed LFT's and VL at EOT. We just get to celebrate again for your SVR12. 

What a nice drops in all your labs, your liver is having a much happier time already.

I know you did not get a VL at 4 weeks, but I thought they took some LFT's at 4 weeks? Or am i wrong?

So, how are you feeling, now that you are finished? 

Me too, BTW, that feeling of "grateful" to Gilead and all the scientists and folk behind the science in giving us these great DAA's. C.  



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Moderator

Status: Offline
Posts: 640
Date:
Permalink  
 

No kidding, Lil.  Not only are the little HCV buggers tenacious, so are you!!!  It's great to be a survivor and to know that you can get through the most unexpected challenges and come out with great gratitudel!

Well done, Lil.



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

I HAVE learned from all this what tough, tenacious , little buggers this HepC virus is, and and how amazing it is , that there is a clean drug that can fight it so effectively for the most part, and if it doesn't work, there are other drugs like Vosevi . 

 

For anyone reading this later ; don't hesitate, you can do it. If anxious, nervous , sensitive lilbrownie can do it, you can!

 

My journey through treatment was , for the most part uneventful, compared to what was going on , on a cellular level. There was an all out war going on in my body!! I am eternally grateful to all the unknown, unsung hero scientists/ researchers who made this possible.

 

I remain positive and will update .



-- Edited by lilbrownie on Friday 8th of March 2019 12:11:28 PM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Thank you all, I spoke further to my doctor , plus I sent a copy of my test results to my Primary Care Physician, who has been my beloved family doctor for over 25 years. They both said this is great news, and the < stuff is understandably confusing. Perhaps I an a pragmatist, I'm happy for the work my magic pill did, but I'm going to put off celebration till I get my final results

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

lil brownie. 

this is it.. your stats are good... you did good. the daa's did good.

 

 i focused on the not detected part ..... not sure why they confuse us with the less than thing..

but for sure, you will be club zero after all this



-- Edited by 5-1-18 on Friday 8th of March 2019 02:42:20 AM

__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

Hi Lil,

I agree with Lam, don’t worry about it. You can still be detected, but below the LLOQ, or Lowest Level of Quantification. It only takes a straggler to put a blip on the PCR radar. It has been documented in others at EOT and each went on to SVR12. If you want to ask, see if you can get it repeated at Week 4. I bet it will be undetected. Do your best to not overthink it. The time from EOT thru week 12, always seems like it’ll take forever. It’ll be over before you know it!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 170
Date:
Permalink  
 

I would not fret about it. Even those whose HCV PCR Quantitative comes back undetected may still have a few HCV virus hiding somewhere in the body. When you have the test repeated in 3 months the test will most likely come up undetected. There is some variance between labs so if you have a choice you might want to use a different lab for the next test. The gold standard is still undetectable 6 months after end of treatment.



__________________

Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Okay, I'm kind of confused. I got my results, and here they are.  I'm a numbers person, so I was baffled on this, called the office and I was told not worry, I mean you either have it or you don't , right?

My doctor told me these tests are incredibly sensitive, and anything under 12 copies is considered undetectable, so why is it show HepC still in there? I was told I may see this, and not to worry,  in their opinion, I was in remission.

I will be retested in 3 months, but they are confident I will be cured.

 

Also got a pretty comprehensive Metabolic work up and all was normal.  I did notice my AST and ALT numbers have skydived to normal.  

 

HCV PCR Quantitative Detected <12 IU/mL Not Detect IU/mL

This result is a positive result indicating the presence of

hepatitis C virus, but at a level that is below the limit of

reliable quantitation for this assay.

 

COMPREHENSIVE METABOLIC PANEL - Details

 

Component Your Value Standard Range

Glucose 99 mg/dL 70 - 100 mg/dL

Creatinine 0.76 mg/dL 0.50 - 1.20 mg/dL

BUN 11 mg/dL 5 - 24 mg/dL

Sodium 135 mmol/L 135 - 145 mmol/L

Potassium 4.4 mmol/L 3.5 - 5.5 mmol/L

Chloride 97 mmol/L 96 - 108 mmol/L

Bicarbonate 24 mmol/L 18 - 30 mmol/L

Anion Gap 14 mmol/L 5 - 16 mmol/L

Calcium 9.8 mg/dL 8.5 - 10.5 mg/dL

AST 27 U/L 0 - 40 U/L

ALT 29 U/L 0 - 35 U/L

Alkaline Phosphatase 54 U/L 28 - 123 U/L

Albumin 4.5 g/dL 3.8 - 4.8 g/dL

Bilirubin, Total 1.0 mg/dL 0.1 - 1.3 mg/dL

Total Protein 8.0 g/dL 6.5 - 8.2 g

 

CBC W/ AUTO DIFFERENTIAL - Details

WBC 8.8 10e9/L 4.3 - 11.0 10e9/L

RBC 4.42 10e12/L 3.93 - 5.19 10e12/L

Hemoglobin 14.2 g/dL 11.6 - 15.9 g/dL

HEMATOCRIT 43.4 % 35.7 - 47.8 %

MCV 98.2 fL 83.2 - 100.5 fL

MCH 32.1 pg 26.8 - 33.3 pg

MCHC 32.7 g/dL 30.9 - 34.7 g/dL

Platelets 281 10e9/L 170 - 422 10e9/L

MPV 9.0 fL 9.3 - 12.9 fL

RDW 11.8 % 12.2 - 15.3 %

RDW-SD 42.6 fL 40.1 - 52.1 fL

Nucleated RBC, Absolute 0.00 10e9/L 0.00 - 0.00 10e9/L

Nucleated RBC 0.0 0.0 - 0.0

Neutrophils 58.8 % %

Lymphocytes 26.7 % %

Monocytes 10.7 % %

Eosinophils 2.3 % %

Immature Granulocytes 0.5 % %

Basophils 1.0 % %

Neutrophils, Absolute 5.17 10e9/L 1.80 - 7.80 10e9/L

Lymphocytes, Absolute 2.35 10e9/L 1.00 - 4.00 10e9/L

Monocytes, Absolute 0.94 10e9/L 0.20 - 0.90 10e9/L

Eosinophils, Absolute 0.20 10e9/L 0.00 - 0.45 10e9/L

Basophils, Absolute 0.09 10e9/L 0.00 - 0.20 10e9/L

Immature Granulocytes, Abs 0.04 10e9/L 0.00 - 0.10 10e9/L

 

GFR CALC - Details

eGFR Non African American >60 mL/min >=60 mL/min

eGFR African American >60 mL/min



-- Edited by lilbrownie on Thursday 7th of March 2019 05:08:34 PM



-- Edited by lilbrownie on Thursday 7th of March 2019 05:10:07 PM



-- Edited by lilbrownie on Thursday 7th of March 2019 05:24:00 PM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Moderator

Status: Offline
Posts: 640
Date:
Permalink  
 

Good to hear from you Lil Brownie!  

Oh yeah, I remember having a case of the scares.  And that fatigue!  Good that it does pass and that you are not feeling it continuously.  I became acutely aware of how important water is.  Still, now I am quick to notice when I starting to run low.   I like the way 5 put it so I'm just going to repeat it below.  Happy EOT LilB!

Permalink Reply Quote 
More indicator.png

lilB, EOTw00t.gif , we all had the scareds before our labs.... it's fight or flight instinct, we are born with it blankstare

you will be fine, these pills work.

and oh yea, i can relate to that weired tired ,am i dying feeling. so glad it's all over now ,.. we'll celebrate soon.clap.gif

and for sure, they got back up meds up the kazoo now days; still i'm sure these worked for you too heart.gifcake.gifchew.gif



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Senior Member

Status: Offline
Posts: 375
Date:
Permalink  
 

Congrats on your EOT Lil brownie

Ive got my dancing shoes all ready to celebrate your UND status with a great big happy dance! Please keep us posted and thanks for the update!



__________________

F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

lilB, EOT , we all had the scareds before our labs.... it's fight or flight instinct, we are born with it blankstare

you will be fine, these pills work.

and oh yea, i can relate to that weired tired ,am i dying feeling. so glad it's all over now ,.. we'll celebrate soon.

and for sure, they got back up meds up the kazoo now days; still i'm sure these worked for you too



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

Hey lilB,

Good to hear your news.

So, all finished your pills (tomorrow) and then off for your EOT blood draw on Tues.

Hooray! 

Harvoni has cured SO SO many, I am betting it has easily done the trick for you, just like it has for thousands of others - I am betting you are very well cured right now! Even though your doc is right - "officially" we cannot use the word "cure" until SVR12. It is good he will be doing a SVR24 as well. People like to get good news repeated. Some docs are not even doing the SVR24's. 

I know you did not get a 4 week VL done, but you did have 4 week LFT's drawn (I think you said?), so, did you say what those LFT results were?

He is also right about the not fretting about extending Harvoni (should you have been slow to respond), there is EVERY likelihood you have already been perfectly well-cured with the harvoni, so, it is just a wasted concern, and had you not been cured on harvoni, then the other new regimes would work perfectly for you. 

I too, did not always drink enough water while on my vosevi  and I know i paid for it! I just found it so hard to believe (at the time, whilst I was in the midst of things) that i needed to drink more - but lesson learned, often too late, I still to this day try to drink more water, I can still help myself cure a headache or maybe feel a little better just by making sure I have enough water in me! 

Harvoni has SUCH a great track record - but we know and understand what you are going through with doubt, many of us still go through worry about failing. Until you get your EOT bloods back (which will be great relieving feedback), just keep concentrating on the TRUTH of HOW UNLIKELY failure is. Your doc is right to express to you that he would be VERY surprised if harvoni had not worked beautifully for you. You will not have to be worrying about drinking water while doing another treatment - cuz you won't have to do another treatment - you will only need to worry that you drink enough water period (in general - as a "cured" person!) as it always does a body good.  C. ; )



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Canuck wrote:

Hey Lil B,

You are a positive trooper! 

You said ... " My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. " ...

In other words, your doc plans on giving you a VL at EOT, and then again testing your VL at EOT+12 weeks (3 months after EOT), and then again at EOT+24 weeks (6 months after EOT) - is that what you are describing? Historically, that has been a fairly typical (standard) EOT protocol, to test for SVR 12 (sustained virological response at EOT+12 weeks), and, some docs still do test for SVR 24 (at EOT +24 weeks). 

Your treatment is only 8 weeks, just as mine was, and just as a  fair number of other folk around here who have been nicely cured on short courses. Many people are still receiving 12 week therapies though, perhaps the majority, it may be a case of we just don't get to see how many of us do get the short courses though.

Many have been easily cured on 8 weeks of harvoni, so will you be cured, so be positive when you doc speaks of having a "back-up plan", it is just him doing "due diligence". You said  ... " My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. " ...

This is just good preparation and planning - mind you i wish i knew what his "plan" was??, did he tell you?? - would it be simply to extend your harvoni by 4 weeks, or, would he choose to be re-treating you at another time with a dif regime??

Regardless of whether a person is on a 12 week therapy or an 8 week one - i am a big believer in "you can never have too much information, nor have it too early". Whether you are on an 8 week or 12 week therapy, I like to see everyone receive a 4 week VL and LFT's, so that they can know where they are at, that they have started to respond well to the drugs (but, if you are on a 8 week course and your doc elects to do only a EOT VL), then (in that case) i would ask for the VL to be done early (plenty shy of your EOT date) just so that if he chooses to, he might extend your Harvoni therapy by 4 weeks seamlessly.

As Tig mentioned, VL testing is not that great an expense (nowadays) when you look at the overall cost burdens of treatment. Being on a short course (just like many others who are on ANY length of therapy), I would prefer and appreciate to know how well therapy has affected my LFT's and VL at the week 4 mark. Having all the info possible is only good feedback and can only help gauge options, if options ever need to be considered. That's the way i look at it anyway.

But, i am just wasting words here - as you ARE going to be well cured and quick too! Just wanted to share my thinking on rationales.

5 is right, if you start getting headaches or constipated or perhaps any other not so nice feeling, you'll soon know to try drinking more water. Just like being on quite a few different kinds of drug therapies (from antibiotics to whatever), your GI tract/liver and kidneys bear the brunt of dealing with the processing and excretion of same, water often does a body much good and is a helpful ally at any time, especially when on many varied drug therapies. Sof in your harvoni for instance is mostly dealt with by your kidneys, it is really quite difficult to do water intoxication to yourself to any degree that would appreciably show up in low sodium blood levels for instance, but the ample water intake certainly helps the sof course through every cell of you and sof's aftermath being excreted nicely in dilute urine, and all the while perhaps preventing feeling sides. That's what i think anywho. : )  C.

 


 Hi Canuck..

To answer your question,   about my doctors plan in case I do not respond,  he said he would NOT extend the Harvoni after this last pill.  That is why he did not do a VL mid-treatment.  

IF (and he said he would be extremely surprised if I did not respond)  was to wait a few months, and move to another medication that works on nonresponders, instead of putting me on more Harvoni.  According to him, if I am not responding to Harvoni at 4 weeks, keeping on it would most likely not help.

He plans to test me at EOT, then at 3 months, and once again at 6 months.   At 6 months UND, he said he would be confident in saying I was cured. He said he used to test all the way up to one year out, but no more.

It is interesting that after he told me it was not necessary for me to drink a gallon a day, I stopped.  You know what?  I did not feel as good!  IF I have to do this again, I will drink ALOT like I did the first 30 days.

Hope I clarified some things!



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Hi everyone!  

Been awhile since I have posted, and tomorrow is my last pill.   

 So...my journey since I last posted, has been interesting.  The only side effect I had, and it really was only a couple of days a week, was OMG Fatigue and anxiety.  I have gotten to where I recognize it coming.  First, my hands and arms would get this odd heavy feeling.  Then I would just get SO tired. I mean, so tired I could barely speak tired.  This would make me anxious so I could not sleep.  Thank God, I have my low dose Xanax, it got me through those days.  Last Sunday was brutal,  my poor hubby was so worried.  I just laid there on the recliner, cold, exhausted, and he felt so helpless.    Next day I was fine.  SO weird. Since that awful day last Sunday, I have been fine.  Great in fact.  

I go in on Tuesday for my EOT tests....guys I am SO nervous.  I know I said earlier in treatment, that I was not going to worry about the outcome, but I was lying to myself and to you all.  I am SO afraid this didn't work.  I know there is a possibility, but right now, at this second, I am just shaking inside.  I said I would not go there...well I did :(

I know also there are alternatives to those who fail Harvoni, my logical mind knows if that happens, I'll soldier on and do THAT too...but fear is kinda trumping logic at this point lol.

I will let you all know what the results are as soon as I get them.  Many of you said this would be a roller coaster for some of us...well you were right!

 

 

 



-- Edited by lilbrownie on Sunday 3rd of March 2019 08:53:05 PM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

Hey Lil B,

You are a positive trooper! 

You said ... " My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. " ...

In other words, your doc plans on giving you a VL at EOT, and then again testing your VL at EOT+12 weeks (3 months after EOT), and then again at EOT+24 weeks (6 months after EOT) - is that what you are describing? Historically, that has been a fairly typical (standard) EOT protocol, to test for SVR 12 (sustained virological response at EOT+12 weeks), and, some docs still do test for SVR 24 (at EOT +24 weeks). 

Your treatment is only 8 weeks, just as mine was, and just as a  fair number of other folk around here who have been nicely cured on short courses. Many people are still receiving 12 week therapies though, perhaps the majority, it may be a case of we just don't get to see how many of us do get the short courses though.

Many have been easily cured on 8 weeks of harvoni, so will you be cured, so be positive when you doc speaks of having a "back-up plan", it is just him doing "due diligence". You said  ... My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. " ...

This is just good preparation and planning - mind you i wish i knew what his "plan" was??, did he tell you?? - would it be simply to extend your harvoni by 4 weeks, or, would he choose to be re-treating you at another time with a dif regime??

Regardless of whether a person is on a 12 week therapy or an 8 week one - i am a big believer in "you can never have too much information, nor have it too early". Whether you are on an 8 week or 12 week therapy, I like to see everyone receive a 4 week VL and LFT's, so that they can know where they are at, that they have started to respond well to the drugs (but, if you are on a 8 week course and your doc elects to do only a EOT VL), then (in that case) i would ask for the VL to be done early (plenty shy of your EOT date) just so that if he chooses to, he might extend your Harvoni therapy by 4 weeks seamlessly.

As Tig mentioned, VL testing is not that great an expense (nowadays) when you look at the overall cost burdens of treatment. Being on a short course (just like many others who are on ANY length of therapy), I would prefer and appreciate to know how well therapy has affected my LFT's and VL at the week 4 mark. Having all the info possible is only good feedback and can only help gauge options, if options ever need to be considered. That's the way i look at it anyway.

But, i am just wasting words here - as you ARE going to be well cured and quick too! Just wanted to share my thinking on rationales.

5 is right, if you start getting headaches or constipated or perhaps any other not so nice feeling, you'll soon know to try drinking more water. Just like being on quite a few different kinds of drug therapies (from antibiotics to whatever), your GI tract/liver and kidneys bear the brunt of dealing with the processing and excretion of same, water often does a body much good and is a helpful ally at any time, especially when on many varied drug therapies. Sof in your harvoni for instance is mostly dealt with by your kidneys, it is really quite difficult to do water intoxication to yourself to any degree that would appreciably show up in low sodium blood levels for instance, but the ample water intake certainly helps the sof course through every cell of you and sof's aftermath being excreted nicely in dilute urine, and all the while perhaps preventing feeling sides. That's what i think anywho. : )  C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

Tig wrote:
5-1-18 wrote:

it's such a comfort to know that they do know what they are doing with us now days


 Hey 5,  Are you sure? wink


 hahahaha, . hubs is sure that the dr tried to poison him with an extra month of harvoni , but he never had to try interferon so..... he is cured now so to me that is the most important part of our life; and i can see his improvements but they are too slow for him cry

and i can understand his frustration.

i wonder if a week would be enough since the life span of the virus is 3 weeks.... oh well, i think 8 weeks was ok for a life saving treatment



-- Edited by 5-1-18 on Tuesday 5th of February 2019 07:15:34 PM

__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

5-1-18 wrote:

it's such a comfort to know that they do know what they are doing with us now days


 Hey 5,  Are you sure? wink



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 375
Date:
Permalink  
 

1 week! Thats awesome. Then can we tell those whippersnappers how lucky they are and how we had to do TWELVE WHOLE WEEKS??



__________________

F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

it's such a comfort to know that they do know what they are doing with us now days



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

5-1-18 wrote:

hi lil, 

i think they change protocol every few months as new stats become available.

if you want to, go to your regular dr for a liver panel.... just that the liver panel makes us feel better when we see it going well. it's true tho, the tx is so good now days that they assume it will work.

you will drink more water if you need to

glad to hear you are resting


 Oh this is so true!

My doctor told me he is confident that a ONE  week treatment will be possible sooner than we think.  It's amazing!



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Thanks for the replies and support! About the viral load test, I find I really don't have much interest in knowing at this point.

My doctor has laid out a plan in case I don't respond, including a timeline and alternative medicine. I prefer to think this course will be successful, but if not , I'll deal with it then. I'll know in 4 weeks if this has a chance of being a cure.

 

My doctor was careful in saying that if I am UND in 4 weeks, I'll be in " remission" and not until 6 months UND I can say I'm cured. Until then, I soldier on ;)



-- Edited by lilbrownie on Monday 4th of February 2019 10:49:46 AM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

hi lil, 

i think they change protocol every few months as new stats become available.

if you want to, go to your regular dr for a liver panel.... just that the liver panel makes us feel better when we see it going well. it's true tho, the tx is so good now days that they assume it will work.

you will drink more water if you need to

glad to hear you are resting



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

Hey Lil,

Back when I was on treatment, the viral load was a required test. Many of the protocols demanded it. They called it “response guided treatment”. If your viral load wasn’t crashing or was elevating, they would stop treatment. We had to have them at least every four weeks.

Your doctor is right, the value during treatment is of little use, unless it’s elevating. There is a lot to be said about that VL at 4 weeks though, it’s a huge morale booster. They used to be expensive, I paid $1800 for one once! They can be had now for $200, big difference. There are labs that will do them on demand (without a doctor’s order), if you’re willing to cover the cost.

Your energy swings are very common. Enjoy the buzz and take a nap when the fatigue sets in. You’re going to experience this as long as you’re on treatment and about a month post. Your body is in a tug of war with a determined Dragon! They don’t go easily, but little do they know, it’s futile...



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Hi everyone!

In three days I start my next box 28 pills.  I visited my doctor who told me that he would NOT be doing a viral load test until I finish treatment.  He said VL would not affect his treatment protocol at all, it is an expensive test, and unnecessary at this point.  At the end, in four weeks, I either responded to treatment or not. Afterward, I will be monitored at three-month intervals, until six months.   

So...this time they only did a Differential CBC, which was mostly normal with slightly higher Neutrophils (Absolute)  at 8.75, which I guess my body is fighting something at this time.   WBC was also slightly higher this test, but the doctor does not seem concerned.

The fatigue/energized cycle comes and goes, but its mild and it passes within a day or so.  I think I get fatigued because on the day I'm energized, I way overdue. I mean WAY.  SO I am forcing myself to rest even when I want to go full blast. 

One thing the doctor did comment on, is the hydration.  When I told him I  was drinking a gallon a day, he asked: "on purpose?"  I laughed and said yes.  He told me it was NOT necessary with the DAAs, as it was with the old Interferon treatments.  In fact, he sais as small as I was, he wanted me to be careful of getting an electrolyte imbalance by drinking too much water.  I told him I used to do two liters a day, now I do three. He told me to keep at it if I wanted, but two liters for my body weight is FINE.  So...I went down to two liters and I feel about the same other than I have to pee less haha :)

As soon as I am finished I am going on a juice cleanse, Proteolytic enzymes, and acupuncture to normalize the army that is working full blast right now.  Can't wait! 

 

Take care and will write more soon

 

 



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 1032
Date:
Permalink  
 

Wow half way already? you go girl! sounds like you got this in the bag.

love that sign C.

best wishes, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



Senior Member

Status: Offline
Posts: 160
Date:
Permalink  
 

Canuck wrote:

: )

Image result for halfway there

 


 I am starting to copy & paste all these wonderful images to hang around all around my office and kitchen; this, Tig's water jug. The images make me smile and give me and probably most of us, a good push to stay positive.



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

5/14/19: NO HCV DETECTED!!



Guru

Status: Offline
Posts: 505
Date:
Permalink  
 

Halfway done. Yay

No sides. YAY



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

3 years...post tx... successful dragon slayer 



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

: )

Image result for halfway there

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

lilbrownie wrote:

Hi all you lovely folks , thanks for all the replies and positivity, haven't posted in a few days , been super busy. Feeling fine, no more sides for now. Go for blood work this week, and pick up my last box of magic pills. I'll post results when I get them, crossing fingers it's good. Half way there phew! TTYL !! Lil


 great news lil



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

Drummmmm roll, pleaze!! I know the results will be impressive, they always are with these new treatments. No side effects is always good to hear and calms the fears of others behind you. It’s nice to know how much easier things are getting. 

Keep hydrating, that’s going to keep the SFX at bay. 



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Moderator

Status: Offline
Posts: 640
Date:
Permalink  
 

Eager to hear, Lil

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Hi all you lovely folks , thanks for all the replies and positivity, haven't posted in a few days , been super busy. Feeling fine, no more sides for now. Go for blood work this week, and pick up my last box of magic pills. I'll post results when I get them, crossing fingers it's good. Half way there phew! TTYL !! Lil

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Moderator

Status: Offline
Posts: 640
Date:
Permalink  
 

Hi LilB

Every day is a little different, especially in the first few weeks. That's good news about some lift in brain fog.  Who doesn't want that?! It sounds like you've got this and are making progress.

Funny, with anxiety, how the mind makes a mountain out of a molehill only to be followed by a less dramatic outcome. I'm glad it's not turning out to be as bad you thought it might.

Just hang in there, rolling with the punches.  It seems like along time, until it's over.  Over time, this will be just one well earned chapter.

All the best to you.

Cheddy

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

hi Lil', good to hear from you today

 



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Senior Member

Status: Offline
Posts: 375
Date:
Permalink  
 

Hey lil, way to go! Good job keeping up with the ins and outs of being on treatment. Glad to hear your brain fog is lifting, that is wonderful. For 12 weeks I took my pill at 7:30PM so that I would sleep through the worst of the effects. That worked well for me, and I think youre wise to move your pill time to 8pm or just before bedtime. Nice that you only have to do 8 weeks! It will fly by. Keep up the good work



__________________

F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

lilbrownie wrote:

All in all, so far it has not been bad.  Except for a few days, I cannot feel any effects of the meds, period.  I hope that holds true for the remainder of the time, but like Canuck pointed out, its a roller coaster (for ME) and I will take it as it comes.

One wonderful thing I have noticed in the last few days, even when I was physically tired, my mind seems clearer.  The brain fog is lifting, and for that I am joyful.   I took SO many supplements over the years to combat the dull fog I walked around with, and although some did help, this is the clearest I've been in years. Not sure if this has to do with my HepC clearing or my heart rate and blood pressure not being dragged down by my beta blocker, but I'll take it!

 


 Sounds a lot like others that have traveled this journey before you. I like your expectation that you will get to feeling better, and you will. I would say both of your recent changes are responsible for your differences in cognition and clarity. Certainly the beta blockers are going to act that way. The way your heart and vessels react to any of the blockers is sure to affect you. I see great things ahead! Stay adequately hydrated, that's most important now. If you're not drinking AT LEAST 3-4 liters per day, try harder! Trust me, it's worth all the effort you're putting in now.



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Canuck wrote:

Hi Lillb,

Some of us on trials have been lucky enough to have had frequent bloods drawn for VLs, and ALTs, can we get to see these big drops for ourselves. Some of us have seen our VL's plummet at week 1 of treatment. And other trial studies have shown how quickly (often within days/weeks of therapy start) the VL does crash. A crash beginning at day 3 was the shortest I have read about in studies.

I did not notice prior the addition to your sig llne info until yesterday...  " Harvoni 8 weeks - 12 weeks approved if required" ... I assume this was something you and your doc discussed right from the beginning? I had inquired before about what date(s) they plan on doing VL's on you, within the 8 week course (aside from the 4 week VL draw we know is planned). Did you get confirmation about what the date should be for an early 8 week EOT VL draw? Depending on and following the results of your first 4 week VL draw, and if you are going in for a 4 week visit to the doc, then at that time you could firm up with the doc what your next VL testing date should be (if a 2nd draw date has not already been decided on).

You sound as though you are riding these Harvoni waves very well indeed. I sometimes visualized being bobbed along, being moved, immersed and cradled in a sea of cure. : ) C.


 Canuck you got me thinking here,  on the "12 Weeks approved if required.  I called to clarify what this meant, and I was told my insurance company approved me up through April 12.  My treatment ends on March 5. Way before that.  The reason they approved it that way was in case I had any delays in START of treatment.  NOT to EXTEND treatment if I don't respond.  Glad you brought that up so it would not confuse anyone who is just starting.  I will edit my signature immediately.

 

Okay, so the "wired "feeling lasted two days,  and on the third day, I kinda crashed, laying around all Saturday, in a weird, tired but unable to sleep state.  That night, I slept really well, waking yesterday just feeling normal. The wired feeling is gone for now and so is the fatigue for the most part.  It catches up with me if I overdo things, which I do a lot, but it's not bad most times.

I did have a small epiphany on my "wired "feeling, it may not be completely the Harvoni causing it.  As I mentioned my Primary Care Doc had lowered my Beta Blocker for the duration of the treatment.  For a long time I have been wishing he would do this, as it was not only slowing my heart rate and controlling my PVCs and PACs, it was causing my blood pressure to be SO low.  I used to scare the nurses when I would go in for visits early in the morning after I had taken my blocker because it was that low.   Last blood pressure reading I had, since I had the dosage lowered was 110/72, I was THRILLED.  This could be contributing to my increased energy. 

You were right, it was a bit of a roller coaster last two weeks.   I see my doctor next week for a blood draw, and they will be calling the pharmacy for my next box.  ( I cannot believe I am saying that already!)  

After that, I go in for another round of tests exactly 4 weeks later,  and they will monitor me until 6 months ( I think that is what they told me, I'll ask again next visit)

All in all, so far it has not been bad.  Except for a few days, I cannot feel any effects of the meds, period.  I hope that holds true for the remainder of the time, but like Canuck pointed out, its a roller coaster (for ME) and I will take it as it comes.

One wonderful thing I have noticed in the last few days, even when I was physically tired, my mind seems clearer.  The brain fog is lifting, and for that I am joyful.   I took SO many supplements over the years to combat the dull fog I walked around with, and although some did help, this is the clearest I've been in years. Not sure if this has to do with my HepC clearing or my heart rate and blood pressure not being dragged down by my beta blocker, but I'll take it!

 



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

Hi Lil glad to hear your journey is well on the way, and going pretty good by the sounds of it. Keep up the good work. That Dragon Spawn is now well and truly leaving the building. 



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

for sure, your liver is a few thou virus lighter and the newer ones are not replicating.... so they are just about outta there.

not only do the old ones die but now none of them that are left can reproduce becos of the DAA action on the rna of the virus

bug spray and birth control all in one



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

Hi Lillb,

Ah, the harvoni "high"! Others on Harvoni have described kind of what you did about a time of feeling wired (I think people can feel like that on other DAA's too) but this is not to leave out some feelings of fatigue, that we see can happens too (for some of us)! i had the most curious mix of both when i was on vosevi, but for me the fatigue was the overriding. 5 describes it well, that you never know if you will feel anything much at all or if you could (might) get a "roller coaster ride" mix of things - we always hope for nothing too noticable. The good thing is that the things you think you might be feeling now could well ebb/dissipate quickly.

You said ... " Maybe my body is already a few hundred thousand viruses less, and feeling it.  Hope so. " ...

I agree, that your VL has probably decreased by now - with this many days of Harvoni under your belt now your VL number has probably been decimated. Likely your VL number started to be  decimated within days, I personally guess these bouts of the "runs" actually may herald very good (viral death) news and marks a big internal event of DAA's hard at work. Very significant and telling crashes of VL's and ALT's can start to happen within days of being on therapy (often at least by week 4). We complete the DAA course to seal the kill.

Some of us on trials have been lucky enough to have had frequent bloods drawn for VLs, and ALTs, can we get to see these big drops for ourselves. Some of us have seen our VL's plummet at week 1 of treatment. And other trial studies have shown how quickly (often within days/weeks of therapy start) the VL does crash. A crash beginning at day 3 was the shortest I have read about in studies.

I did not notice prior the addition to your sig llne info until yesterday...  " Harvoni 8 weeks - 12 weeks approved if required" ... I assume this was something you and your doc discussed right from the beginning? I had inquired before about what date(s) they plan on doing VL's on you, within the 8 week course (aside from the 4 week VL draw we know is planned). Did you get confirmation about what the date should be for an early 8 week EOT VL draw? Depending on and following the results of your first 4 week VL draw, and if you are going in for a 4 week visit to the doc, then at that time you could firm up with the doc what your next VL testing date should be (if a 2nd draw date has not already been decided on).

You sound as though you are riding these Harvoni waves very well indeed. I sometimes visualized being bobbed along, being moved, immersed and cradled in a sea of cure. : ) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

5-1-18 wrote:

lil, my hubby was wired the entire time after he took his pill,  he is retired so could sleep anytime.

i had to move my pill back a few hrs at a time till i got to my best time.

not everyone reacts the same re: sleep and energy.

hang in there, you are getting cured; you may have a roller coaster ride but at the end of tx you will be CURED. 

i'm glad you came here to post; this place saw me thru all the weird experiences i encounter whilt OT.

let us know how this turns out for yu


  Phew , good to know about your hubby!  

 

I ended up falling asleep at around 2:30 AM,  slept like a baby once I did fall asleep.  Got up at 6:00 AM to get hubby off to work and went back to bed for a couple of hours.  I woke up feeling normal, not wired like I was yesterday.  I didn't mind it too much, as it was not a manic kind of wired, more of a "one too many cups of expresso wired"  It  just kinda threw me to see myself go from fatigue one day to wired the next !  The upside is my house is spotless for the weekend :lol:

Maybe my body is already a few hundred thousand viruses less, and feeling it.  Hope so.



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 956
Date:
Permalink  
 

lil, my hubby was wired the entire time after he took his pill,  he is retired so could sleep anytime.

i had to move my pill back a few hrs at a time till i got to my best time.

not everyone reacts the same re: sleep and energy.

hang in there, you are getting cured; you may have a roller coaster ride but at the end of tx you will be CURED. 

i'm glad you came here to post; this place saw me thru all the weird experiences i encounter whilt OT.

let us know how this turns out for yu



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Okay , so...kind of a strange update. At 1:00AM! I should be asleep! Today I woke up with a LOT of energy. I mean a LOT. I did more today, than I have in weeks. I'll talk more about it later, as I'm doing this on my phone and no glasses on , so posting is kinda hard. I think I edited a reply I just posted to another persons thread 3 times, dang tiny phone keyboard :groan: Gonna try to sleep, what an odd turn of events!

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Guru

Status: Offline
Posts: 3162
Date:
Permalink  
 

Hey Karyl - HI! : )

 

Hi Lillb,

Back to you. : ) 

About "the runs", we have had more than a few folk around here note the same event, seems to be  a therapy related event (I am guessing) when there is no evidence to the contrary (no other explanation such as pre-existing sensitive gut hx, a stomache flu or bug or something-bad-one-ate reason surfaces) - personally, I do think when the DAA drugs start in on their initial work we can exhibit GI signs, just such as these runs (but i think most often these runs are VERY short-lived bouts). Some folk notice nothing that way. I always think of Lamont at times like these, him riding along on his motorcycle when the runs hit him, looking at bushes as he speeds by trying to get to that nice Costco washroom in a hurry.

You can read until you are blue in the face the  "side" drug monographs and reports, and they do not really indicate very well how many and what kind of "GI" experiences a person may or may not get - just known we have had a few folk here just like you, who experienced the runs as well. I do not recall any of our folk who had "ongoing" trouble with this, it seemed always to be a transitory "passing" thing! You did the right things anyway, with your water drinking and electrolytes.

About moving the dose time (sounds like a plan) IF that is what you think you should do (what I have heard is never moving it more quickly than by a one hr increment per day). I don't recall what time of today you were taking your dose before (just that you had been taking it in the "evening"), so, if you change the dose to be taken at 7PM or at 8PM, how many hours are you adding?? - what time of "the evening" were you taking it before?

In moving the dose time, another consideration would be it's timing to a meal - I was just saying to someone else, i would always opt to take meds "with a meal" when there is any choice. I would be striving to take the drug with a meal, at the same time everyday. 

Good informative thread you are writing. : ) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Veteran Member

Status: Offline
Posts: 74
Date:
Permalink  
 

Welcome.   I'm 65 and also have panic disorder. Don't worry. The Harvoni won't be mean to you.  I finished my 8 week treatment with little side effects, just woozy the first week then a few headaches and the fatigue.  That's all. The weeks will fly by and soon you'll be rid of that pesky virus. 



__________________

65 yo  40+ yrs geno 1a 

5 weeks VL undetected. AST 16  ALT 10

VL 5,930,000  AST 29 ALT 29

Fibroscore .40 Stage F1-2

Treatment naive, starting Harvoni 9/23/18 8 weeks

T



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

5-1-18 wrote:

hi lil, it sounds like you are getting your routine down. awesome.

i didn't feel anything for 2 weeks, then a few sides hit me and i was so disappointed. i felt sad that i had to rest more and just let the medicine do it's job rather than lead a more active lifestyle.

we are here if you decide you have something to talk about more than once a week; but i'm so glad you posted today

5


 Oh 5, you hit it on the head there!   I find that being active is the best way to handle my anxiety, it seems that when Im moving, my brain has less room for the constant noise of worry.  Besides that, I'm a bit hard on myself since I retired, thinking I have to find other ways to stay relevant and productive.  

That being said,  the treatment has forced me to slow wayyyy down.  It actually feels kind of good to give myself permission to just ....rest.



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



Member

Status: Offline
Posts: 41
Date:
Permalink  
 

Observer wrote:

I was on twice a day treatment and had to accomodate the daylight savings time change, so I moved my pill times in small increments.

 

 


 Thanks Observer and all the kind souls here who are so supportive.

Actually, my dear hero of a husband was expressing concerns over me moving my dosing time, my doctor was very stern about me taking the pill at the same time every day.  I scoured the Giliad website and others and found its okay to move it in the way you described.  I plan to do it in 30 minute increments.

Just a bit more, to maybe 7:00 pm should be good.   

 

 

.



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

Tig


Admin

Status: Offline
Posts: 8816
Date:
Permalink  
 

Thanks for the update, Lil. Sounds like you have things firmly under control and that alone will make your journey much smoother. The first few weeks are an adjustment period for most people starting these DAA’s. As long as you continue to be proactive with the issues you’re having in the beginning, the remainder will go by much smoother!



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 

1 2  >  Last»  | Page of 2  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.