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Post Info TOPIC: Counting down time to this first pill


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RE: Counting down time to this first pill
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Welcome SuzieLu,

Well yay, sounds like you are well on your way to kicking that dragons ass. 

 

Alison

        



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

4 years.... successful dragon slayer 



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Hey Suzie,

You say your husband's from Ontario? Don't worry, nobody's perfect.  hee hee, sorry, I couldn't stop myself. wink

Re: the "fibroscan" test - not all docs are partial to them (most are, I think, nowadays) there are more and more docs valuing the data derived from them to add to your overall picture, it is also a good "following" tool in gleaning liver regeneration/fibrosis reduction/liver stiffness improvements going forward after cure. More "fibroscan machines" are now more readily available than they used to be, and more facilites have them now, the machines used to be few and far between to access.

Just my opinion, but if there is a machine in your area easy to access, why would docs not use them, good additional tool and info, helps with the sussing of before and after comparisons. Good adjunct to bloods, and to other imaging methods, in assessments, and, to "follow" you with. Fibroscans and ultrasounds are particularly easy to repeat, no blood required.

Most people call it a "fibroscan", it is actually a "Vibration-Controlled Transient Elastography" (VCTE), or "Transient Elastography" (TE) for short. The machine they use on me is made by "Echosen", they have various models, mine happens to be an older model, has no "CAP" capability (to additionally measure degree of fat), I just get the kPa Fscore. C. smile

Hope these links work:   http://www.myliverexam.us/diagnostic     

                                     http://www.myliverexam.us/fibroscan-exam    


__________________

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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Reminders will be appreciated, but I'm already starting to slosh when I walk.   I want to flush this bug out!! furious

Onward to Treatment Section..



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69 yo F, Geno 1a, Fibro: .67 (F3), Dx 1/2017, Approx date of infection 2003

AFP: 3.5, VLog: 5.278, ALT: 57, AST 41, GGT: 168, Alpha2M: 461 (way of out of range), US: multiple small cysts

12 wks Harvoni, SOT 5/19/17, 6:00 pm

Do not compare yourself to who you used to be.  Begin again.

Tig


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You posted that perfectly! Nice  smile. If you would like to start a new thread in the On Treatment section, feel free. I like to say, you've graduated! Then comes Post Treatment. We have a place for just about everything else. We want to make the ride easier for those following. You really seem to have all of your ducks in a row. Lets count on success!

We'll be reminding you to hydrate until you're numb, so get used to it!

       

 



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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I appreciate all the mods and gurus who welcomed me this morning.  What a nice surprise!  I am super impressed that ya'll stay with the forum after you've been cured. Thank you for sharing your wealth of information with the rest of us.

JimmyK, I will definitely keep my 6pm appt. with THE PILL every day.  Loved your allegory with the Dragon.  I had no idea that he would be slain within the first 2 weeks.  I am sitting on my 1982 HD Shovelhead, with ape hangers and 2" shotguns.  No bike ever sounded sweeter and she was a scene stealer wherever we went.  After 10 years and several breakdowns in Sturgis, I bought a new one.  Wahhh

Canuck, guess what, I am married to a Canuck! lol  He is from London, Ont., but transplanted to CA in the 70's.  I will gag that water down, no matter what!  I won't drink bottled water, but we have a company in town that takes city water and filters is down even further.  It is lovely aww.     RE: score ranges, yes I noticed that they could change from yr to yr.  The range for A2M on my lab report is (106-279), mine was 461 with a Lab Note 1 that said "unusual deviation with median value."  I didn't see that note until after my dr. appt. or I would have asked him about it.  My ALT/AST was surprisingly low on this most recent report.  I've been having blood tests twice a year for the past 9 years, and historically the numbers are 98-113/58-76.  Yet, my primary doctor never ordered a HepC profile!!  After he retired, his replacement ordered this test for me right away.  I was totally ignorant about the HCV.  Anywho,, I will request the Fibroscan test - I assume that is an MRE?  Sheesh, now I even know abbreviations.

wendyo, thanks for wishing me a Happy Day 2.  The sky didn't fall and I feel pretty good.  I'm a tea sipper too, but think I will switch to green tea during this ordeal.  Glad to know that you didn't notice much change, hope that I don't either.  What I pray is that I will feel much better when this crummy virus is UND!

Jaggles, thanks for the welcome, fellow biker dude.  Whether we have a bike or not, or whether we ride as much as we used to, it's still in our blood and some of the most fun times of our (my) life.  This darn virus jumped up and bit us, but I don't have any regrets.  Some of my early tattoos didn't come from the most savory places, not to mention the biker I married.  It's good news that you are half way through and feeling great.  Hope I am able to say the same.          (I wonder, should I have responded to each post individually?)

Save



-- Edited by SuzieLu on Saturday 20th of May 2017 04:10:17 PM

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69 yo F, Geno 1a, Fibro: .67 (F3), Dx 1/2017, Approx date of infection 2003

AFP: 3.5, VLog: 5.278, ALT: 57, AST 41, GGT: 168, Alpha2M: 461 (way of out of range), US: multiple small cysts

12 wks Harvoni, SOT 5/19/17, 6:00 pm

Do not compare yourself to who you used to be.  Begin again.



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Welcome Suzie...fellow biker chick biggrin 

i found this to be the best site too.....much more consistent and supporting people who really  let you know you're never alone ...I remember well taking that first pill....it was quite an emotional moment ...im half way through treatment and feeling great .. but after reading your post now wish I still had a bike to ride...how cool 

well wishes

keep on rockin xxx



-- Edited by Jaggles on Saturday 20th of May 2017 09:57:50 AM

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HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 



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Welcome Suzie!

Happy day 2

Watermelon = YES as well as any other good sources of water.....I drank lots of decaf tea while on treatment as well as putting fruit in infuser bottles to give the water more flavor. I also have insomnia and the Harvoni did not make it worse. Personally saw no change in it during treatment. Was able to continue my gym routine but if I felt tired I took time off the gym. Listen to your body. You got this girl!

wendy



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi SuzieLu,

Glad to meet you here.

Congrats on your DAY ONE of harvoni! First pill down the hatch is a very good day, from your dx start back in Jan! Great how things worked out so well for you re: the help you received, form-filling, costs and everything. Very nice.

I never was and I am still not a "great" water drinker. From time to time I paid the penalty dearly for not drinking enough when on treatment (I've always learned important things the hard way it seems!), I thought i was doing my best, but it IS so easy to underestimate. You CANNOT guage "by thirst" alone, nothing to do with it, go by pre-measured volume only - strive for a gal of water per day even if your loathe it. I did learn tho, and today, I am proud to say I AM a better water drinker than I have ever been before, and I even actually like it a bit more, and now truly appreciate how important it is (on or off treatment)! I am still curing "normal" headaches, to this day, by simply increasing my water intake. Even for a couple months post-tretament I realized I needed to keep up my water intake. Having HCV and getting cured taught me a great many things, one of them was how important water is, all the time, and especially when under the influence of these drugs. You could not do your body a better favour.

So nice to have your sig. line to refer to!

Dif. countries and dif. labs can have dif. "normal reference ranges". Within my differing Canadian lab facilities, I can find differing ranges used - eg. GGT - one will say "normal is" (Female) 31 U/L, the next lists 10-30, the next 5-36! Your GGT at 168, no matter what range your USA lab uses, is elevated. And, as you noted, your alpha2m is elevated at 461 - one of my Canadian lab facilites considers normal range to be up to about 279 mg/dl. YOU DO HAVE TO GO BY what YOUR labs normal ref ranges are tho. 

We can surmize your F3, was arrived at by only a blood test called "Fibrotest" (or Fibrosure) - that  0.67 does equate to being within the F3 range by fibrotest. Fibrotest basically converts 6 dif blood values, including 4 of which you mention here (ALT/AST/alpha2m/GGT and others) to give you that F3. Many of us do have elevated ALT/ASTs with HCV, but being that you also have the mentioned higher alpha2m and GGT, those 2 alone help contribute to bumping you into the "fibrotest" F3 range. In general your labs indicate activity in inflammation. You may be pleasantly surprized how quickly your "fibrotest score" (and some of the elevated labs you relay here) begin to right themselves soon after you are on treatment. Do not fret too much about your prior labs, they will start to improve soon. 

You did not mention having a fibro"scan". I would still ask your doc if you could also have fibro"scans", another way to give you Fscores, going forward, based on liver stiffness measurement. A very easy painless test to have.

I, for one, am betting my bottom dollar, that you wil NOT get headaches on top of headaches!!wink all because you are drinking ALL THAT LOVELY WATER! smile 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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Greetings and Welcome.

Just a bit South East of you here in Spring. This is a great group of folks. All walks of life here and somehow the Family works.

If you remain hydrated the worst thing about treatment is remembering to take the pill. On that note it is important to stay consistent ( compliant ) regarding the time of day you take it. It is a 24 hour pill best designed to work at its' max right there at the every 24 hours range.

We are glad you are here. Lot's of experienced folks that are happy to share. Most of us are cured but we hang around just to help others while in almost disbelief that the Dragon is dead.

It will be overwhelming how fast things will transpire. You have taken your first pill and believe it or not an out and out massacre has already commenced. The ability of The Dragon to replicate is being disrupted. Replication will cease all together very quickly and in roughly two weeks or so the HCV RNA will be UND. 

The rest of the remaining 10 weeks is a merciless mop up. A hunt and destroy mission that absolutely gives no quarter. If they were to make a movie about what is going on inside you right now they would be carding you before selling a ticket.

So if I may ask, what are you sitting on in the pic?

Thanks and again, Welcome!

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Thanks for the H2O suggestions.  Here's a tip for anyone (like me) that is a difficult blood draw.  Drink that gallon of water right before you go in for your draw.  It really works!  I'll spare you my horror stories on that subject.

I checked out your list of financial help references and saw the organization that is helping me, HealthWell Foundation.  They gave me a $30K grant.  I was shocked and humbled because I would not be getting this medicine without it.  Goldstar Pharmacy did all of the paperwork on my behalf. 

The pantry is stocked, spring cleaning is done, and I'm ready for 3 months of rest.  And maybe a ride or two biggrin



__________________

69 yo F, Geno 1a, Fibro: .67 (F3), Dx 1/2017, Approx date of infection 2003

AFP: 3.5, VLog: 5.278, ALT: 57, AST 41, GGT: 168, Alpha2M: 461 (way of out of range), US: multiple small cysts

12 wks Harvoni, SOT 5/19/17, 6:00 pm

Do not compare yourself to who you used to be.  Begin again.

Tig


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You can add that watermelon and wash it down with a gallon of water! Water is a suggestion, but it works. Concentrate on all things healthy, right now in particular. Try infused water or those flavored squirt bottles like Mio. I get the store brand. They make water bearable. 

You fit right into our little family here! We have a couple other Texans here and one of em rides, too. You'll have some of those stories together, I'm sure! smile



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Hey Tig,

Thank you for the welcome.  Pill went down, and away we go...

I like water about as much as my cat.  Can I eat half a watermelon instead? jk

I can tell from the posts how important it is to stay hydrated.  I will do it!



__________________

69 yo F, Geno 1a, Fibro: .67 (F3), Dx 1/2017, Approx date of infection 2003

AFP: 3.5, VLog: 5.278, ALT: 57, AST 41, GGT: 168, Alpha2M: 461 (way of out of range), US: multiple small cysts

12 wks Harvoni, SOT 5/19/17, 6:00 pm

Do not compare yourself to who you used to be.  Begin again.

Tig


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Hey SuzieLu,

Welcome Sister! So glad your research brought you here, too. I like to think we have a lot of great people here. It's a friendly place to just hang out and get good information if you need it. I might be a little biased though! Seriously caring people here, without the BS, if you know what I mean. 

You're to be commended on your signature line! Wow! We could put you to work as a Sig Designer. Well done, that is very informative, thanks.

I hope you don't experience worse headaches. We have people that have noticeable improvement in them after successful treatment. This may improve more than you realized! Let's expect it and it will be so smile

The time of day you take it depends on your schedule. You should take it at the same time each day! It sounds like you are already having difficulty sleeping, this might help that too. People claim they have deeper sleep and livid (?) dreams. I hope you see a better nights sleep. Harvoni might cause some muscle and achy joints for the first few weeks, but improves. You MUST drink at least a gallon of water per day, everyday! Those headaches you spoke of will occur if you don't. Water is your friend, keep it around all day.

I'm going to post this before I go off on something else! If you have any questions, we'll help you find an answer smile



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 6+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



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All day I've been feeling anticipation and dread to take this first $1000 Harvoni pill.  Please don't let me choke on it!  I am not a morning person, so I decided to take it at 6pm tonight.  Does the time of day make any difference anyway?  Thankfully, my doctor's office handled all the arrangements with Medicare and patient assistance so that I don't even have to make a copay. 

Testing moved quickly after my diagnosis in January and I hope that I have entered the results correctly below.  If not, let me know and I'll fix it.

I'm not too concerned with side effects since I am retired and can stay home to deal with them.  I already suffer from fatigue, insomnia, and daily headaches.  I told my husband that now my headaches will probably have headaches!

Thank you to the caring people with positive attitudes that moderate this forum.  This is the best one that I researched today. 

I'm not real chatty so you might not hear from me often, but it's comforting to know that you are there to help me through this.



__________________

69 yo F, Geno 1a, Fibro: .67 (F3), Dx 1/2017, Approx date of infection 2003

AFP: 3.5, VLog: 5.278, ALT: 57, AST 41, GGT: 168, Alpha2M: 461 (way of out of range), US: multiple small cysts

12 wks Harvoni, SOT 5/19/17, 6:00 pm

Do not compare yourself to who you used to be.  Begin again.

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