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Post Info TOPIC: Started harvoni 5/1/18-my thread :D


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RE: Started harvoni 5/1/18-my thread :D
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Wow 5 the big test already! Ive got nearly three weeks to go. How long before you will know anything? My nurse said up to two weeks so can imagine it will be an exciting yet nerve racking wait for the news. Haven't seen any of those who were ahead of us here getting bad news on their SVR 12 so its all very promising that we too will be slayers. As a 3a I know I will be a tad apprehensive once I've had the draw. At the mo I'm not at all perturbed but sure the feelings will change once the big blood draw has happened. I know from all the information put in front of me when my journey began, that there are failures. My nurse puts a lot of them down to people not taking them regularly etc, among the current user population.

Good luck with yours. Sounds like you have been doing really well of late. xd.gif



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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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thanks sista C, that is a great song!

yep that blood is already moved to the new location to let the testing commence. 

it's an eerie feeling to wait for the good words.... like knowing it already and hoping my blood knows it too...

we have all done the waiting time.... nervous and excited

i did get my teeth cleaned today too and relaxed a lot and did laundry.

i hope to report the news soon. have a happy day everyone biggrin

 

 



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Now, that's more like it! What I was waiting to hear! Yaaaay. You go girl! Blood bombs away by now i guess - so, here's to waiting (not much longer) for results. biggrin wink C.

 

HEY SISTERS
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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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change of plans. i just sent the liver doc a message yesterday that my last pill was 6.25 and that i needed to know if the tx worked! 

i got the docment, will print it and take it with me today for after my dentist appt.

so glad Canuck suggested i just ask for it

will know results soon, plus it will make going to get my teeth cleaned so much easier biggrin



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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i made my wellness appointment for next thurs the 27th, so either i'll have my labs from the snooty tech support at the Liver Docs; or i'll get labs from at my wellness.... either way i'll get labs next thurs

i'll just tell her [the nurse prac] that i still need a viral load since i ended treatment mid junebiggrin . and also a D3, then i'll rush upstairs to get the lab work.

this feels good



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Yea! Your feeling better! That's so good to hear do keep updating what past symptoms seem to be improving for you.
Blessings, Iris

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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)

Tig


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I have to agree with you 5. The new DAA’s are so effective, they all expect success. There really is nothing wrong with that mindset, but for the patient, nothing is ever assumed. When I was on treatment, they required 2-4 week testing, because the treatments were so harsh and continuance was dependent on those results. We always sweated out those results, too. They would stop or change the course of care on the result of one (of many) tests. It’s an expectation us old timers have trouble shedding. We like tests, not only for the action shown, but the morale boost those good results provide. Scaling back the tests absolutely reduces the costs of care, so I have to accept the reductions as a good advance. Still... wink

I’m almost as excited as you are, for these tests to come back! I fully expect success, as do you, but it’s a special day when you see it on paper and it’s official. SVR and that elusive word, CURED, seem to jump off the page. Just wait, you’ll see!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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my new thinking is that june 25th was eot. so from june 26th to 3 months would be sept 27th????? let us pray they do math like me.hahahaha

i guess these meds work so well that they have become lax in the testing dates



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Well, what the heck sis! It's just that i wanted them to give it to you as soon as possible, that's all - but ... i still can't understand what's wrong with that GI office of yours and their weird (in my book) answer to your query ... only "in exactly 3 months!" - that is just so weird to me especially that they (being a GI guy and specializing in HCV) would be just like my hep doc - a hep specialist who always speaks in terms of weeks! True SVR12 is "exactly 84 days from an EOT date" (if one is anal about it - which my hep doc is! hee hee - very small joke in case you missed it). wink

So, ... if your GI guys is saying "your blood draw will be exactly 3 months after your EOT" ... ummmm, OK then, so what day (precisely) is that! Obviously longer than 84 days anway. Oh well - your GI guy is driving me batty!

Never mind!, we know you're cured, and that's what's important, let it drive me batty (and NOT you) that you don't get a SVR draw exactly on day 84, as long as you are OK about it - and you do sound OK with it too (that when your blood draw date comes, it comes) - true, it will all be "official" soon enough. We already know you are golden. biggrin C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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they are very stubborn over there at the Gi spec., God forbid this puts them out of a job if a regular doctor could start prescribing.

but, the thing is.... i'd have to go see my Fam. dr and she would give me the labs in a heart beat; still i'd have to wait an hour or two to see her if i walk in, not really interested in doing that since in a cpl weeks i'll have my lab request from Mr.Stubborn. hahahha blankstare

my hope is it comes on the 1st or 2nd of Octo, then i can test on the 3rd , or the last friday of the month of sept would be even better



-- Edited by 5-1-18 on Thursday 20th of September 2018 01:24:56 AM

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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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ah well - just as well then! Funny the way your doc counts - mine ALWAYS insists on weeks! No never mind, we are all warmly soothed knowing you are well, and better and will reap the future benefits of this investment, just without the formal wall paper as yet.

Hey, this way, with this bit of delay, we still got time to send out some more invitations for your SVR12 party and what kind of cake this time - shall we go decadent white again? wink C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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i got my reply "Labs will be due exactly 3 months post treatment.".

that's ok, just another 2 weeks . i kinda like the month thing anyway so it fits for me rather than the weeks thing lol,

that timing will be better for me too cos of my busy schedule right now with this and that going on during my days off

and for sure, the fight is over for me; i know that virus is dead and i am on my post tx road to wellness



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

Tig


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Whatever day it is, I’m thinking:  

4D3EB1DB-18BC-4A80-9EEF-C170BDFC60A5.jpeg



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Good! (As long as you are good with everything!) biggrin Me too, thinks yer cured, long ago! - but ... we have to make it "technically" official! Besides some of us will refuse to party until they see that UND of yours again in black and white in all it's blazing glory.

So, if you and your doc go with a "3 months after" your EOT date of Jun 26, as the day you get your SVR 12 bloods drawn - then what day were you thinking the draw would be done on - Sept 26??

If everyone decides to stick to the more standard SVR12 on Sept 18, then really, there's not that much time dif between "3 month" labs or 12 week labs - except ... that the SVR12 week labs would be collected about 8 days earlier then.

I, for one, am dying to see your lovely UND, even if you have the patience of Job. winkbiggrin C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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i sent my doc a message via the portal they provide. i asked if they were doing an actual 12 or 3 months.

i'm ok with either one; this week i'm very busy with stuff but could easliy get it done if they send it by wednesday morning via the web page . i can print it and get it done.

if not then that's ok too. i feel cured and knowing any less wouldn't serve me anyway , so ..... 

but yea, here's hoping they send the lab work by wed. morning cos otherwise i will have to wait another week or so to get out to get it done

i will def let you know what they say



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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In terms of "weeks" (ie. "SVR12weeks" it is called) ... if your last Harvi day was Jun 26, then (exactly 12 weeks later, from EOT) your "SVR12week" blood draw would be due on Sep 18. That's what I'm figuring anyway, not being based on 'calendar' months, but on "weeks", just like treatments are based on weeks, and a SVR24 is at 24 weeks after EOT. We may think in terms of months, but almost all things to do with treatment are measured in terms of weeks. SVR52 gets to be a bit much for the math and counting, by then, most blase cured folk are just saying "I'm 1 year SVR" instead! heehee 

If you are anxious to have your VL done sooner than later, you can remind them that (if my counting is correct) that 12 weeks from your EOT would make Sept 18 your SVR12 draw date. Don't let them postpone your 12 week draw to later by allowing them to count in months, they already withheld a EOT VL from you, that they could have done had they been nice and wanted to for you, so don't let them procrastinate by suddenly switching to measures using months instead of weeks! Jes sayin. wink C.  



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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they told me 3 months C. , but i'll send them a note anyway so they don't forget me ....they lagged on my 4 weeks labs so it couldn't hurt to turn the heat up on them

they may switch to months after the first few tests.



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hey,

Isn't tomorrow Sep 17? If your last day of Harvi was Jun 26 ... then ... isn't your SVR12 on Sept 18??

Are you going to the lab tomorrow, or soon?? Or do i have my days and counting yet again all screwed up! confuse C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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now in my 3rd month post tx i notice brittle  nails with vertical ridges.... i've had some in the past but they seemed smoother for awhile.

something tells me this is after effects of the beloved harvoni.... not a big deal as in 6 months they could be healthier again.

i will keep an eye on them



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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oh! fewer stomach problems. less gas. hardly ever have indigestion even when i indulge in gooey,cheesy, tomatoey , greasy things occassionally

if i eat too fast or too much i can get gassy or a little indegestion... normal stuff. yay

that was def the virus!i do believe   



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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hi C,,

just got home from work a cpl hrs ago.

well you know the first month post tx was hell for me ,. the migraine, inflamed gums, stomach virus, sinus infection,... tired.

the second month just mainly easily tired needing lots of rest ; but could finally take my claritin without getting anxious. but my feet and hands still swelled... had to take it tho cos i didn't want another sinus infection.

here i am in month 3 feeling pretty free , nothing weird, feet and hands not too bad even on the claritin days which i take only a few times a week now to keep things going good in there.

i have taken about about half a milligram of water pill now and then to help the feet... it works . and i still take the 1mg of valium  on work nites to make sure i sleep. [and right now only working 3 days a week. yay!

still drinking 2 qts water a day [2liters] and eating well.

i am having more zest and stamina too... even more than before tx. Last month the claritin gave me energy, now i am having some of my own i think. 

i am taking zinc oleate, vit D, b12 @ 50mcg. for supplements. i won't take the milk thistle or other good things till svr 12

i got und at 4 weeks and at 8 weeks got great other liver labs , so i'm happy waiting.... i couldn't be feeling this good if the liver went back to the dark side

i have always been a positive person but when i started healing my old wounds and emotions i learned how to talk to myself in kinder more optimistic ways.

so i can say i feel better than before tx and during tx too. and more on an emotional even keel too.

i am even exercising easier ; and my skin has been kind to me too; but i also use vaseline on my face and it serves as a protective layer that give it less sensitivity too.  i was always afraid of using petrolium jelly on my face, but that and jojoba oil and argan oil are my new best friends.

i get exciting thinking about how far i have come on this great journey and now only a few weeks from svr12

 

oh, i use the cold pads so they never leak...hahhahahaha, but yea ... it's a cold pak circus.. arms, hands , neck.... and i use the magnetic knee braces over my feet too . .... so yea, i'm def using all i can since i don't use asprin, ibuprophen or tylenol unless the pain is reallllllly bad... so i haven't had any since that migraine episode.

oh, i still have to make sure to rest as much as i need to in order to be active and to work. and i still only work 6-7 hrs a nite if i can to keep my feet feeling better... and i get tired . it's very focused work and i have to entertain as well... so... . but i still have more energy for other things for longer periods of time.

 



-- Edited by 5-1-18 on Saturday 15th of September 2018 06:23:12 AM

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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hey 5,

I was thinking of some of the comments you have made fairly recently, spread out, over here and there on various threads, kinda about how you have been doing/are doing. Like your post to Dandyindeed not that long ago, that spoke to some improvements post-treatment, and same on another thread (that I can't locate just now) that spoke even further to more specific physical things that seem to already be improving for you post-treatment (dietary/gut things I think it was). I reply here to a variety of your topics because i didn't know where else to best continue the dif discussions. 

I (and I am sure others), will always be glad to know this kind of feedback, a persons retrospective comparisons over time. I am sorry you have had to be kept waiting for a VL until your SVR12, they should have offered you a nice EOT VL, but because you are a strong, confident, very positive kind of person who has surmised you have already beaten this virus, I forgive them for making you wait, as we can see you are doing SO well both with the whopping of the virus AND in your ability to patiently wait!

You are a good model for many, how to work all through treatment, how to take good care of yourself, how to be positive (and support others too)!

You made me giggle with one of your posts about how you have been handling your long-standing bodily pain/discomfort complaint things - (I DO hope that is one of the areas we will see future improvements in BTW), where you were describing all the various hot and cold fomentations and packs and electric heat pad applications from stem to stern to help a body good! heehee It was just this mental picture of you I conjured up spending time getting various heat and cold thingies stuck and wedged, placed and draped all over various required spots on your body to get the old body moving good and keeping it running along better. I had this image of you in and out of a freezer getting ice packs, replacing melting ice head to toe, whilst some bits of body were getting electrical heat applications all at the same time - sounded like a dangerous lounge chair ride! It almost sounded like a livingroom version of a Norwegian sauna then jump in and roll around in the snow treatment.

I am a big believer of good simple hands on hot and cold and "water" (of all sorts) treatments. Too bad in my little town we have a sauna and it is closed for the lions share of the year and over the winter months too! If it was available, ya know where i would be! I'm still thinkin about Iris's special shower thingie, or maybe dragging that not very good antique claw-foot tub I have had hoarded away for decades in the garage and setting it up in the back yard and lighting wood fires under it to make my own hot tub!

I sure enjoy your positive outlook here on the forum. Please tell me again which things have vanished or have already started to vanish (as far as what you thought were hepc related things)?

Later, smilewink C.

 

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__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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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hi tig, i agree ... this confirm of undetected is as good as cured

i look forward to my SVR12 with confidence since my liver panel a few weeks ago shows my liver is still happy

i hope you are having fun but getting some rest as well with the little ones wearing you out



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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hi C, by the time i started tx those ppl had moved on from my work place but they were def in my mind.

one is still there but he also has other non-harvoni related probs. ; but it was good to see him now and then.

the bosses had seen 2 of them during their tx and were aware of the ups and downs.

yes, i continue to have some very nice days , i can now take some antihistamine .. just a bit of dust on my finger and lick really; but it gives my body just enough to help me. Kind of like holistic stuff that you only need a bit of. it's not in my mind cos i notice when i don't get my dust. hahahaha

so, yea... one month after tx things started going in a calmer, better way for me

i still need plenty of rest and off my feet but i am thrilled with my progress

hubs still had other probs that he must see dr's for now. rhumatologist is next cos his aches and pains are pretty much constant cry . he's been off tx 7months now and it's not as bad but still daily pain.

i count my blessings and praise my mind for for my positive self talk ; since my last labs showed good liver panel results i too am positive that the virus took the hint and left without much resistance. it was time, the free ride was over biggrin

5



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Hey 5,

Nice for your string of good days - you do SO MUCH deserve so many more of those (and they will come, I am sure), good news on your hubby's SVR24, really good. You will be next in the SVR line-up in just a couple months what with your SVR12 date coming up, but we all know, in our guts and hearts, that you have already been sustaining it - I just know it! It's the family plan, the whole dang household deal, everyone cured, no virus left standing. wink

How is work going? You said some of the folks you work with were familiar with what you were going through, because they too, themselves went trhough treatment? - did they share what their drugs were, or what it was like for them? Did you work with any of them while they were going through treatment? Just curious. I thought that good that you had others around you (aside from your dear hubby) who went through it and to whom you could relate. Did your co-workers experiences help you at all you think?  C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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WOOHOO!! That’s fantastic news! That is absolute proof that his SVR is strong. He can start breathing again, lol! I remember getting my 6 month VL and was sweating it. Honestly, we sweat them all, but SVR12 is all we need to confirm success, but each one after the fact, is always golden. It’s my favorite word these days, ”Undetected”...



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GOOD NEWS ABOUT HUBBY!!  UNDECTECTED biggrinbiggrinbiggrinAT 7 MONTHS POST TX



-- Edited by 5-1-18 on Wednesday 15th of August 2018 09:00:12 AM

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hooodie biggrinbiggrinbiggrin. i am def having a string of good days over here. one month PT {post treatment}



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Awesome! High five, 5!!



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AFP-L3% result is below the detection limit of the assay. Ref Range: 0.0-9.9

AFP,Serum  1.6 normal: [ReferenceRange] 0.0-8.0 ng/mL

 


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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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thank you hoodie and canuck . i even woke up ok to day too; but taking it easy anyway biggrinbiggrinbiggrin



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5,

Go ahead and laugh at me, but I "flunked" sinus lavage (yuck) miserably! Pushed to do it by an allergist I saw not long ago, got all the expensive accutrements of lavaging oneself with saline and steroids, and never got the hang of it. Tried and tried, but it was something akin to water boarding or drowning in your own bathroom. Called her back and she offerred me a nice neat tidy expensive (not as good a method according to her) fancy/pansy simple steroid nasal spray instead! We bargained for middle ground, I devised my own inexpensive saline, used up the expensive steroid concentrate she originally gave me, and used it as a nasal spray (versus) as a "sinus lavage". Together we just had to juggle and adjust how much steroid to mix with the saline (same ingredients) when used in the nasal spray mode instead of the sinus lavage mode.

When I was initially in search of sterile saline, I don;t know how many pharmacies I went to, saline not to be found!, (what?!) and when it was... what highway robbery that was - it's JUST salt water fer kripes sakes, not prohibited, restricted or rare, like oxicodone or gold fer cripes sakes! Why is saline not a cheap/common from-the-shelf item to be found at ANY pharmacy! 

So my remedial course on nasal sprays has now kinda petered out too, I guess I would rather put up with my symptoms, which really are not bad now. We'll see.

 In retrospect ... are you thinking that one-off migraine-like thing had maybe more to do with the sinuses/inner ear thing happening versus than just an out-of-the-blue migraine?

My fingers are crossed for you, that the sinus/inner ear thing will be silenced now. Only nice and quiet, and calm and good should be the things in store for you after all your hard work. Things will get and go better - you'll see. A little time, and things will start to right themsleves. Glad you are better than you were! smile C.

Later, C. 



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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.

 

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Glad youre feeling good 5! Stay well my friend!



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today i actually feel alive and good. left ear sill singing a little song, but the right ear gives me hope that all will be well soon. So either i get to feel good or this is the giddyness before the sinus infection tries to blow up again..... of course i am looking forward to a easier this being a better month than last month.... virus free and feeling good today

i just used the neo up da nose after i quit the AB's to give my sinus something to suck on.hahaha, and it helped the dryness pain

i use the nasal crom which is:

Cromolyn Sodium is the sodium salt form of cromolyn, a mast cell stabilizer with anti-inflammatory activity. Cromolyn sodium probably interferes with the antigen-stimulated calcium transport across the mast cell membrane, thereby inhibiting mast cell release of histamine, leukotrienes, and other substances that cause hypersensitivity reactions. Cromolyn sodium also inhibits eosinophil chemotaxis.

so, that is my saline solution every day. also i have used mineral oil up my nose for dryness.  just a dab on a qtip of anything really.

i can't see adding more salt to my system by putting it in my nose so i use the distilled water in this alkalol device [can't use that cos allergies to the stuff]. then put just a little in my nose to flush up, rarely over. Then spray with nasal crom and dab with moisture

i'm not big on this flushing the nose thing....... haha biggrinbiggrinbiggrin

i'm thankful my work week is over and that the last 3 days went easy on me. wow.

5



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thanks friends smile . i already feel much better today. 

i was taking a dose of probiotics 12 hrs after my dose , i stopped that too when the **** hit the fan........so to speak.hahaha

i now swear it was a virus; i have never had that kind of sickness with AB's before.

so.... now to just stay well and not catch anything else or have weird things going on in my head.hahaha .

today i got my afp back and no flags.... it's hard for me to read that particular lab report but will get another on wednesday and i'll post that...... but i'm happy with "no flags". 

ahhhhhhhhhhhhhhh



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Agree with Tig, probiotic (yogurt/sourcream, etc., etc., whatever source you prefer to consume/can consume), as long as you are getting enough good bacteria in your gut (or back into your gut as the case may be) - before, during and after systemic antibiotic use. I think it is good idea to do this (just on principal) when on antibiotics, as we always have to keepin mind the destruction of a sizable amount your good bacteria that may happen as well. Maybe you did just unfortunately have the gastric fluey thing the others did, or, maybe it was your antibiotics robbing your gut of balancing bacteria, and thus either (or both), propelling you to spend time doodoo-ing the loo.  

Hydration/flushing of nasal/sinus mucous membranes (if required) should alway be saline, not just tap water, not distilled water. Saline is as close to and as compatible as can be with the bodies cell make-up, saline is best to use directly on mucous membrane. You can google up how to make up your own boiled/sterilized saline supply (if you are flushing your sinuses/nose a lot for some reason) - but the whole idea of mucous membranes is that they produce this wonderful stuff - called mucous, which, when in balance, works great all on it's own for lubicating, hydrating and protecting you from harming substances, and preventing things from traversing your respiratory tracts - wonderful stuff mucous is, when you have just the right amount of it, at the right viscosity and it's doing it's job!  Agree with Hoodie, if one feels they have to use some kind of hydration/moisturizer, soothing barrier or de-dydration preventer ointment up in the nasal mucous membranes because things are out of natural balance/acutely dry - then something like inert vaseline can be used (if necessary) after a flush and re-hydration with a nasal saline lavage, for comfort/relief, a small simple swipe of swipe of plain clean vaseline up the nares might work just fine for you versus using a polysporin antibiotic based ointment (the active ingredients in the polysporin may not really be called for, if all you are after is soothing comfort).

Always best to keep it simple, I think, starting out trying the least intrusive/inert remedies and treatments that provide the relief or effect you are looking for. 

I don't have much experience using coconut oil on mucous membrane in any kind of ongoing fashion, or, at all, so I can't speak to that, have only ever put coconut oil it on my skin, brushed my teeth with it once!, and, I have eaten a fair bit of it! 

Some stewardess gets some credit for this dangerous but effectively soothing trick ... (never a sole treatment) ... for ear popping (OR ear infection, etc., an inner ear problem) - dip a clean washcloth in boiling water and wring out with thongs or squeeze between plates or whatever until NOT dripping, quickly stuff/jam the steaming/boiling hot damp/wet cloth in the bottom of a tall tumbler (use a tumbler large enough to keep the boiling hot cloth stuffed securely in the bottom end of of the tumbler so the hot washcloth never touches you, wring the cloth out enough so that hot water will never drip back/run back on you, tilt the hot end of the cup ever so slightly downward, just in case). Completely encircle/cover over your ear area with the big open end of the cup, keeping the tumbler sideways/horizontal and let the heat/steam transfer across the cup to the ear for at least 10 mins or until you need to re-wet the cloth with boiling water again to make/keep this tumbler a steam chamber. This can aid greatly blocked, poppin ears, perhaps assist in opening eustacian tubes, soften/move wax, and help speed up lymph and blood circulation to assist curing and soothing congested inner ear things (or outer ear things for that matter). A few or several times a day, for 10-15 mins at a time or even  30 mins, can really feel soothing when you have a ear thing going on.

Alternately, just some nice hot/warm/moist compressing can be done directly to the side of your head/neck/ear area on the affected side,  instead of doing the tumbler steam chamber method. That works good too.

That's all I have in my medicine cabinet repertoire. wink C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 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.

 

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Hi 5! I used to use Nasal Crom all the time it worked so good for my allergies! Forgot all about that stuff but next spring Im gonna stock up. Thanks for the reminder. I also used a NeilMed squirt bottle irrigator thingie that was easier for me to navigate than the NetiPot. Great minds think alike  

Can you try coconut oil instead of neosporin for a topical nasal moisturizer? Neosporin often causes more harm than good for people who have a sensitivity to it (namely me and many other people). Coconut oil has mild antiviral properties as well. My doc told me to use plain Vaseline on wounds because so many of his patients cannot tolerate neosporin.  Sorry you were struggling so hard with the ABX and stomach flu.  

Glad to hear youre starting to feel better. Personally I love the CVS silver wound healing gel for wounds. 

Off to work, see ya later feel better soon



-- Edited by Hoodietree on Monday 30th of July 2018 11:33:05 AM



-- Edited by Hoodietree on Monday 30th of July 2018 11:33:31 AM

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I hope you get back to 100% soon. You’ve had a rough patch to get through, poor thing! The fires are so hard on respiration, especially for those with some pre existing conditions. Have you tried eating yogurt or adding probiotics when you try the antibiotics? The heartburn is coming from the AB destroying your gut bacteria. I imagine you’ve tried just about everything. I’m going to remain hopeful that with SVR, you’ll start witnessing improvements in many areas. I’m keeping my fingers crossed! I admire your strength... 



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i should have my afp's by monday afternoon

and my stomach,liver and galbladder feel so fine now after the stomach virus evacuated my guts.biggrin



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Hoodietree wrote:

Congrats 5!! 


 oh hoodie, this is my thread i do most of my blogging on about my journey during and after

i'm def feeling much better and am thinking i had a stomach virus... haven't had one of those in decades.



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canuck, i have a long life history of sinus infections and the last cpl years the ears have jumped on the band wagon. she looks into my ear with her scope and sees something that seems 'contracted'. AND. i have a hissing sound in my ears; normally that never stays around this long [ but ears are viral and can be bacterial too so i'm still hopeful i won't need more meds]. i'll def keep an ear on it

i have always been cured by 2 doses of zpack [azithromycin] , but for some reason she wanted to use this which is more specific to sinus/ear infections...... i could have said "i'm afraid to try something else', but couldn't have imagined this reaction.... i can't take amoxycyllin or tetracycline or doxycycleine  due to dizzyness; but can take some others. some give me bad heartburn.

i was doing good till the stomach thing hit, and like i said it could have been a coincidence but i wasn't gonna gamble on it.  i took 8 out of 14 and maybe that virus took it all down the toilet bowl with it.

i hope that was enough too..... i didn't even see the dr, i'm so sick of that right now. but i seem to be on the good side of the whole ordeal so keeping my fingers crossed.

i had taken a small bit of claritin antihistamine and half a pill of ibuprophen for 2-3 days in a row [normally that's all i can do before my system over loads].  so i thot that was all part of the sickness too.

i just hope that's all behind me now and that my bod can regain health like it wants to.

i use a spray that is chromalym sodium, nasal crom to help with the histamine and rinsing my sinus with the nettie type pot [brand new]. a cpl times i used tap water till i read how that can cause problems so started the distilled. OF COURSE  i thot i gave myself a weird parasite hahaha, but our tap water isn't the worse and it was only a cpl times

i've been using neosporin antbiotic ointment into my nostrils to help with the dryness. that dryness was causing much of the pain..... duh. so, maybe that helped everything out too.

there's lots of fires around here that haven't helped [and those poor ppl right in the thick of it ].

but like i said, i believe i am on the other side of this mess and passed this test well.

 



-- Edited by 5-1-18 on Monday 30th of July 2018 07:32:09 AM

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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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ok , so here's the update on the antibiotic drama.

i may have had a stomach virus! it's going around work and i have never been that sick on any medication before...... curled up in a ball feeling liver,galbladder stomach discomfort like nothing else ......wow

then the runs for 3 days and feeling like a train hit me. 

finally today i feel the most better than in days and days. my ears are still messed up but the headache is gone and most of the dizzyness.......

but i quit the antibiotics, it's not like that couldn't be addressed again if i don't feel good. i wasn't going to take a chance  at all.

so..... lucky me. a migraine , sinus/ear infection and stomach flu in the month after my harvoni, oh yea  and my complexion was right there raging too.

let us hope that in my second month virus free i more good times and healthy days

and the best news is i have my happy life is good mood back. that virus pretty much knocked that right out of me for a few days. even the migraine wasn't as bad as that.



-- Edited by 5-1-18 on Monday 30th of July 2018 07:30:26 AM

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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hey 5,

So this "cindifer" they put you on?, have you taken that particular antibiotic before?, how many days were you supposed to take them, and how many days did you end up taking them? Maybe you managed to get a sufficient number of days of the planned course into you to successfully kill off any organism growing in your sinuses, before you had to quit them? What was it that happened that made you to have to stop taking them?

Did you get to see any doc for suggestions/opinions/advice, about discontinuing your course, or perhaps starting a dif. antibiotic?, or ... what was decided would be the best plan for you now? I was never quite clear on your answer to my prior questions ... when they looked in your ears (prior) did they see red, suspectedly involved/inflammed ear canals, and or ear drums?? If there were any visable signs in your ears before, have they had another look now? Were you having any pain, clicking, popping, muffled noises in your ears before?  

Had any of the sinus/inner ear things (your symptoms) seemed to be improving while you were on the course?

Seems to me the only big stand-out sign and symptoms you were fighting with (just prior to your doc examing you  and saying it was sinus/inner ear related and giving you antibiotics) was that weird "migraine" type headache you had?

If you are prone to "seasonall" type allergy things happening to you about twice per year - what things do you try to do for it, to prevent things from getting the better of you? Did you say previously you do these nasal flushes, or decongestants or anti-histamines??

Let us know how the sinus thing feels now.  confuse  C.



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

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

 

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TA DAH!!! such good news,

except the sinus thing that always sucks. Hope you will be feeling better and better everyday.

BB, Iris



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Congrats 5!! 



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Good news, 5! I expected all to be in nice shape, just as your VL will be. Well done! The liver is an amazing thing, especially when it’s working right. I’m amazed that it can function so well, even when we have been so sick. It’s a tough ol piece of meat! I’m hanging on the edge of my seat, just waiting for your undetected VL. Get it quick, I might end up on the floor, lol!

smile wink smile



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Fantastic news 5 thumbsup.gif You must be thrilled for sure and getting an extra look at the liver function....what a bonus clap.gif



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liver enzymes still normal biggrinbiggrinbiggrin

my family dr included them in my recent blood work..... and hey, even my hdl cholesterol is in a good range after years of struggle with it......

my liver is happy and it shows , no viral load but i know the labs would be hinting at something being off....... so yea, i'm feeling groovey

i'm glad she included the liver panel for me; i have the best fam.doc. OH and my b12 is normal too so i'm thinking that was also part of the virus complications.



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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hi C and stl,

i get these infections twice a year..... and july is the month for one of them . hopefully my body will be able to beat them back easier as i heal from the liver mess

i got the extra time off from work becos i was still so drained from the harvoni so that is cool. i go back on monday.

it's cindifer 300mg. 2 capsules a day, for sinus and ear and yes there was some puckering in there.hahahaha, she didn't say ear drum so that's good . together or apart. toay i split them up up by  a few hours but tomorrow i will take them both at bedtime with my oatmeal [no vinegar for now]. 

oh canuck that is so sad all you went thru at eot . i guess our body has to realign itself after decades of carrying the virus. and also detoxing from the meds.

yea, i can't wait to find out what the doc ordered for me.....normally i check it all out but i was too tired this morning.

it usually takes a week for them to post onto the website but the doctor's nurse always calls me as soon as they get it to let me know if i'm high or low.

now i get to call my boss and let her know i'm on medical again.....but she understands this is a hard time for me.

 

 



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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.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Oh 5 you poor thing. cry.gif These irks and quirks are certainly shooting in your direction. So now you have swapped your antis (antivirals - antibiotics) and the little pill box still has a use in life. Rest up, keep hydrated. Hope you are feeling better soon. Your sun.gif will shine again.



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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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