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Post Info TOPIC: Lil started Harvoni this evening.


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RE: Lil started Harvoni this evening.
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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



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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



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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



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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)



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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

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 



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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



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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

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 



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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)



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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. 



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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



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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

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 



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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

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 

Tig


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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!



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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 1-4 years!

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Really nicely written discription Lil... 

you are really tuned in to your body and on top of developing good on treatment lifestyle. 

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.

 

when I got headaches on treatment , I found that drinking extra water usually sorted them, but I do remember one or two times when I needed pain relief.

Looking forward to next weeks update 

 



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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 



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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



__________________

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



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Hi everyone, I decided early on to post updates one week at a time, this is day seven of my Harvoni journey.

First of all, for anyone who is not familiar with me, I posted in the Newcomers thread back a while ago. There, I gave background on my history with HepC, and my issues with panic disorder,  and general anxiety issues, so I won't go into that again ;)

 

This is the meds and supplements I take in case anyone is curious: 

 Beta blocker for PVCs and PACs,  NOTE:  MY primary care physician decided to lower my dosage on this for the duration of treatment just as a precaution.  So far, I have noticed no difference, with the exception of one night when the PVCs got really annoying at bedtime.  This, however, was very early in my treatment (I think Day 2 or 3, so my anxiety was still pretty high, and I had breakthrough PVCS even at the higher dose when I was particularly anxious.

I have been prescribed Xanax for panic attacks and when my anxiety becomes uncontrollable.  I am only given a certain amount a year and am very careful never to abuse it.  I take the lowest dose and have done so for 4 years. It has changed my life, as I was increasingly fearful of leaving my house because of the unpredictable nature of panic attacks.  I used the Xanax on the first few days, but have not needed it since'

The only supplements I am comfortable taking right now is a multivitamin every other day, with a B complex on alternate days.  I take fish oil as well for my joints every few days and B12 every day on the advice of my doctor since I do not like meat and eat very little of it.   I stopped my magnesium for now,  choosing to eat high magnesium content foods instead.

What is funny and surprising is...it was hard for me to put my supplements away for this time!  Since I was diagnosed, and having to live with HepC,  I became almost obsessed with supplements and eating healthy.  In the early years, I spent hundreds of dollars on all kinds of stuff to help my liver.  Over the years, I backed off, but still have some staples I really loved taking, because I really did feel the difference in my well being.  I pretty much put them all away except the few I mentioned.   

The first day, I was a mess.  It was almost like I EXPECTED side effects.  The second day....again nervous, but curiously I was feeling fine physically.  It might as well have been a placebo, I felt nothing different except what my anxiety was giving me.

Every day that passed, I relaxed more.   I actually felt nothing from the Harvoni. AT ALL,  Until...

The fifth day,  the fatigue hit me like a ton of bricks, about two hours before and two hours after I took my pill.   Luckily I chose to take it in the evening so It didn't affect my day much.  In fact, I had not slept that good in a long time .  I would wake up refreshed, feeling nothing until about 3:00 PM,  then I would fade.  Also on day five, I got a bout of awful diarrhea,  but it cleared up quickly in a few hours.  I mixed Gatorade with my water during that time, and have had no more issues with my gut since.  

Yesterday the fatigue didn't happen as drastically as it had the day before,  even after a really busy day, but it was still there. I am thinking of actually pushing my dose back by a bit every day until I get to about 8:00 PM if this doesnt clear up soon.

I have had one headache this week that got close to pounding.  and for the first time in a LONG time, I took an extra strength Tylenol.  I was reading on the Harvoni website and they suggest NSAIDs such as Advil and Aleve are not suggested because they may cause rebound headaches.   Luckily my husband had some Tylenol and took one 500 mg pill and went back to bed,  in one hour the headache was gone and has not returned.

All in all this last week was kinda of anti-climactic from what I made it out to be in my head.  I am cautiously optimistic and will update next week.  

OH,  I was to say one thing...the water drinking thing haha, has been a challenge,  so I figured out a way that it works for me.  I fill up my bottles in the morning, and I set a timer.  I put 8OZ in a glass and by the time the timer goes off it has to be empty...  I found guzzling from my water bottles had me drinking too much at one time,  make it so I was constantly running to pee.   This way, my body seems to be able to absorb more, and I pee less,  but when I do it is nice and clear.  Oh, I stop all water two hours before bed, the day before I did this, I was up SEVEN times peeing.  That was just not gonna work for me lol.

 

See you all next week 

 

 

 

 



__________________

Age 62

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 

Tig


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Well done, LilB! I like your strength and positive message. I have every reason the believe you are going to slay more than one Dragon with this treatment. You started by believing in yourself and the good that these new medications will deliver. This is your time to shine and you’ll do it!



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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 1-4 years!

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congrats LilB

i take 1mg valium before bed if i have to work the next day. i get good sleep and that makes my work nite better for me.

i love that my doctor put me on them 10yrs. ago. , my dose has remained consistent and gives me better quality of life.

i needed 2mg during the harvoni but went back down to 1mg soon after eot.

your body will let you know.

i carried hcv for about 36yrs and going thru treatment was soooooo worth it.

5



__________________

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



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Congratulation Lil!!  I too have had this dragon in my body for probably over 40 years and have dealt with anxiety and panic.  I have wanted so many times to quit Lorazepam but I think it might be what gets me through my treatment too.  Then we'll see.  I can only hope this disease has been contributing to the anxiety issues and fatigue.

I'll be following your journey and praying for you.  Hopefully I won't be far behind you.  We've got this!

 



__________________

age 64
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 9, 2019
HCV medication(s) none yet but probably Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



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Well done LilB, the first battle won, such an important step on your path to becoming hep-free - keep going!

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58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



Senior Member

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Congratulations on making friends with that marvellous medicine and getting started on your dragon slaying.

Long term HCV wreaked havoc on my nervous system, heres hoping your anxiety will become less of a burden to your life when you rid yourself of the hep c.

 



__________________

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 



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Good on you LilB!  Not only are you getting started on a major and new found cure, you are facing your fears, big time.  Sometimes the intruders are in our livers, and sometimes they are in our heads!  You've just made some excellent choices.  Chalk one up for LilB.



__________________

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

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Hey lilB,

Congrats on your start - Day One! yay! I did post you back on your prior thread "New here ..." - you are sounding strong! Good going.  : )  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)



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First of all, from those who have read my "New Member " introduction post,  I have carried this virus around for a long time.  I have suffered Panic Disorder for years, and the general anxiety that comes with it.   It sucks, and I kind of wondered all these years, how much the HepC contributed...Oh, and I have a drug phobia. 

I  was in the midst of a horrid panic attack when I first got my Xanax prescription.   I stared at it for 30 mins before I got the nerve to take it.  The relief I felt when the medication set in, was something I will not soon forget.    My therapist thinks it is because I abused pills in my youth and I associate it with all the bad things in my life.  She told me I had to rewrite the narrative I had about drugs.   The Xanax is medicine for me, as the Harvoni is.  Any medication I take, I have to become friends with.

That being said,  starting the process of beginning treatment was stressful, to say the least.   I had a panic attack when I received the pill bottle.  I took a deep breath and just ripped the band-aid off.  I swallowed the magic medicine with a prayer, knowing my Xanax was there in case I could not control the panic.  

So here I begin my journey to be rid of these intruders in my body, thanks to this little orange pill.  It's going to be interesting how much water I can shove into my body, but I have my Nalgene bottles filled and ready,  and I'm hoping on the Harvoni train.

 

LilB

 

 



__________________

Age 62

Diagnosed 2007

Started Harvoni January 8, 2019 ( Eight weeks , approved for 12 if needed)

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

GGT 76 U/L

FIBRO BUN 9 mg/dL

INFLA METAVIR CLASS A1/A2

 

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