Hep C Discussion Forum

Hey Upstate! good to hear from you... thanks for checking in it is really good to hear how people are doing post Tx :) 

I tend to worry if the "cure" is forever but so far so good!!!

blessings, Iris

Hello!!

Wow, I go away for a couple days and some good friends appear. I guess I’m going to do that more often, lol. I’m glad you checked in! I hope your health and happiness are A+ 

Like Cheddy and Obs mentioned, the quiet around here is testament to these new drugs and short protocols. Still, I miss all of the daily back and forth with a couple dozen people! I think it was and is our own private HCV Social Media platform, done the right way. We have some wonderful people here. It will always be a welcome place!

Take good care!

Hey upstate 

I remember you...

3 years

I hope you feel well and are staying safe and well during these crazy days.

yes the forum is verrrrrrrrry quiet which shows to go you, the new treatments are fantastic 

Hey upstate,

Congrats on one year SVR! Don't be a stranger glad you are well.

Wonderful news, Upstate.

Thanks for sharing the good stuff. You have definitely pressed the reset button.  Isn't it swell to bring this business to a close.   Stay in touch, though. We like to hear about the recovery from the recovery and the return to whatever normal is!

Big grins from Cheddy

 

Thanks for the great update! Good to know you’re doing well and enjoying life. That’s what this is all about! Stay in touch, its always good to hear from you. 

Geez upstate, I didn't know you spoke pythagoras!! I'm impressed. Bilingually fluent in both hemispheres are we? heehee 

Once you get to feeling 110% again, which shouldn't be too long, wagering on how many cylinders you got firing now - my partner said you should run out and build yersef a set of stairs. You got the angles down pat.

(PS - it was my human clock, calendar and calculator who explained your language and spelled it for me too).  C.

canuck...

hehe

fog is gone

the square of the hypotenuse of a right triangle is equal to the sum of the squares of the other two sides...


wow

Ah, another epclusian warrior wins! And that just how we do it! 

Welcome to Club Zero. Mind you, your seat was already reserved for you here the day you recieved your epclusa, and you did (already) confirm the reservation 8 weeks ago, we are still thrilled you have physically arrived now, and will be lounging around with the rest of us after the battle, taking a well-deserved rest from the war.

I know you have been celebrating for weeks now, but still, there is nothing like thrills and chills winning this gives us.

I liked your "head up high" with butterflies in your stomache while glancing the lancing blows at the lab drawing blood skirmish.

Wonderful words, aren't they, to savour - normal, undetected, won, did it, end of treatment!

And the only scars left, may be on your index finger pushing reload so many times!

I am thrilled for you, and will be again, to hear your ongoing progress and another und reward at EOT+12!

Ya, march strong bro. Lucky guy and good warrior!  C.

OK, fog-test, when the mists clear over the battle field, do this math - what is the circumference of 0? hahaha Tricky eh? Give ya a hint, the answer can't be shorter than a piece of string.

 

12 week blood draw...VL not detected...

Seems like I plugged myself into the correct forum...awful lotta good news recently...myself and others..
Thanks for the vibe...

been eagerly pressing reload on my test results page till it was posted this morning....

ALT 17
AST 20

VL results prolly by next wednesday...

Interesting feeling when 7:30 AM passed this morning and no pill.

hey man

you read my mind..

I actually have some butterflies in my stomach as I anticipate tomorrow, friday morning, 7:30AM, when, with a quick look in the rear view mirror to see where I was a few months ago, and a bit of sanctity, I'll take my last of 84 epclusa, a word I didn't know existed 4 months ago.

And...

I'll be at the blood lab door minutes later, as soon as it opens, and gladly give 'em the best I got... I plan on marching in strong with head high...

I will admit to trying for the last few days to compose profound thoughts for myself, my wife, who has been a wonderful partner on this ride she didn't know she had a ticket for, and for you guys, my caring, anonymous friends, my talisman of information compassion and strength...You guys who have never been far from me this whole time...No profound thoughts, but I'm not ready to let you'all go yet

Hope to share good stuff as it unfolds and help and contribute where when and however I can...

Thanks
Peace

                

YAY!!!!!

 love hearing that you're now viral load undetected!

 A

Hey upstate!

VERY cool, indeed! Congrats!!!!!!!!!! 2b or NOT 2b, was it ever a question??!! Not for you, not with epclusa on your side! Welcome to famous CLUB ZERO - what a great feeling (of relief at least) it is to get a 4 week UND and then an 8 week UND eh? It's gonna be the same at EOT! I say this only in the kindest way, but from now on, we are breaking it to you gentle-like ... you are going to be nothing but a big fat ZERO! 

Glad some of things you felt your first weeks have "pretty much" dissipated. Hope things are wee bit less foggy for you too, for me it was very lightening when the bulk of that started to disappear!  

I am so glad your doc got epclusa for you - it was a very good investment in you and your health, especially being that the wear and tear on your liver does not seem too pronounced. You may see quick improvements in your fibroscans/ultrasounds in future if they are repeated for follow-up. (I would ask to know what exact Fscore they put you at, pre-treatment), and by what tests they used to arrive at that number (especially if they did not give you a pre-treatment fibroscan) - then, ask for these tests to be repeated post-tretament so you can see any measurable improvements going forward in the post-treatment months and years (they likely will, anyway, even if you don't ask, but ... better to discuss it i think).. I would ask for another abdominal U/S if they have not offered you one 6 months to one year post-treatment. These are also very rewarding things to know and see for yourself, if you have those tests done (before and after) and can see/measure and/or find out exactly how much improvements occur over time post-treatment.

Good you are getting the standard 12 week EOT VL and LFT's done. Don't fret about fluctuations in your LFT's, they can do that, and they have crashed so spectacularly from your pre-treatment LFT's, that is just what we want to see! You should feeling jubilent about those puny LFT's, not just your decimated VL! Your LFT's may come down even more, (they may not) and they may continue to fluctuate a bit - it's just they way we happen to be built - yours are ONLY showing that epclusa has done the trick for you. Having lots of LFT's (repeated over time) will show you the best picture of what are quite normal fluctuations and what we are at when normal.

You mention you might be getting another VL and LFT's at EOT+4 weeks, but I am sure they will be asking you to get repeat VL's/LFT's at EOT+12 weeks, and then again at EOT+24 weeks.

Allllmost done, EOT is just around the corner!  C.

Thanks for being here you guys..

8 week VL...not detected...

Cool

Hello,  

Hard to believe two months have passed already. It's not uncommon to see your liver enzymes (AST/ALT) fluctuate within the normal parameters during treatment. If there is a significant increase, your doctor will retest to confirm and then find out why, but the elevation you mention isn't, in my opinion. The AST isn't liver specific, like the ALT is. A sharp rise in the ALT is more concerning. Fluctuations occur normally from a number of things. Exercise can cause the AST to rise. If there is a question of possible relapse, the viral load test will show that. If it has elevated, then there is reason for concern. Once it is undetected, it should stay that way. 

When do you get the VL back? Share that when you get it. I wouldn't worry about minor fluctuations in the enzymes. That happens normally.

Thanks Canuck...

had an ultrasound around the original diagnosis....minimal scarring, just somewhat inflamed and I think enlarged...no one seemed particularly concerned, so I wasn't either...Doc said tuesday I was in pretty good shape and beginning to heal...

And yes Canuck...I do consider myself lucky...everything has gone very smoothly for me...
Interestingly, I commented to my doc that I felt lucky I was prescribed so quickly. He felt his practice was good at presenting it to the insurance company, and commented that he was able to push it because he felt I was a "motivated" patient..and would be hesitant to prescribe such an expensive treatment if I wasn't...Tough to imagine someone not being motivated...

I have a blood draw next friday, at 8 weeks, another at EOT, 12 weeks, and then a hopefully final draw 4 weeks post EOT...

Fog, fatigue and diarrhea have pretty much disappeared.
All good here

That's outstanding! Half way and over the hump, that's a nice feeling. I'm happy you were able to present better questions and understand things during your doctor visit. That's helpful in a lot of ways and lets your doctor know you want to be part of the process, not that bump on the log! If you have any questions, please ask. We're glad to help!

Hey upstate,

6 weeks and halfway done! Yay!

Was just reading your encouraging note to another newcomer-fellow epclusian about how, just this last week, you are sensing some lessening of prior fatigue, feeling a little better on the fog front and in the runs dept! That is a blessed improvement!

Great stuff, all 'round.   C.

(or, in other words....)

Calling it a mental disconnect is about as accurate a description as there is. I swear, I can think it, decide to act on it, get up to do it, walk toward it and when I get there, forget what IT was! A good bit of the last 20 years, I was on pain management. Combine that with the Hep C drugs and my neural pathways were hopelessly severed! Why can't they come up with a drug that heightens intelligence, recall and motivation? I'm aware of a few that make you think you're better, but they unfortunately are only in the mind of the abuser! Illegal too!

We have several threads here that reference "Trains". I wonder if we should have one titled "Train of Lost Thoughts"? I think it would be difficult to get a seat on. You know it would be full of ideas though!

I also received regular phone calls from the RN and my specialty pharmacy during treatment. I know others that have mentioned timely contact by their healthcare team, but that doesn't occur as often as it could. Some practices are more patient care focused than others and I think that comes down to the people in charge and the staffing complement. Take advantage of their time by jotting down questions ahead of time. As previously discussed, that's exactly when those annoying mental disconnects occur! 

If you would like to start a new thread in the On Treatment section, feel free. Once introduced here in the New Members area and treatment has commenced, there are threads there to continue the discussion. 

Tig, are you mimicking me, walking from room to room like that!

Upstate, just for comparative notes, my mental acuity, or rather, very much the lack of, was never more at it's height, than when I was on treatment. Now mind you, I was on epclusa and another 3/4a drug callled VOX (on a trial), so I have no idea what really contributed so much to my deep brain-fart fugue state, (I was very fatigued and not the brightest crayon in the box prior to treatment, or ever), but I tell ya brother, during treatment it was thick, super-thick, my partner took the car keys away from me for a while, and I was glad he did! No snappy synaptic firing going on between my ears for quite a while, felt like tar-baby with my brain matter stuck fast in a sludge quagmire. Oh, the relief when it started to lift. Akin to the first bits of relief one feels getting started on treatment knowing you have obtained the best drugs possible to do the deed to wipe out this virus, and akin to getting that first confirmation of your 4 week VL crash. Nice when the fog starts to fleet, relief from those kinds of things just takes time, and everybody seems different. I am still steadily improving (in many, many ways) over a year later. Things do improve. Water intake was very vital in helping me with any sides while on treatment.

Coddle yourself, remove challenges and stressors as you can, and try to ride the therapy out as patiently and gently as you can with good diet, rest, fluids.

I like your way with words BTW!

Just ask anyone around here, ... do I pry? - if you don't mind sharing, what Fscore tests and results have you had done, did you have biopsies, fibroscans? Any ultrasound imagings. What kinda shape is (was) your liver in, aside from being well on it's way now to being cured of this infection.  C. 

Sorry to be kinda cryptic in my original post.

When diagnosed I really didn't have much of an idea what Hep c was, so I needed some pretty rudimentary stuff, which I got from you all. While my doc prolly explained it all to me, it stuck better after the shock had worn off, and was more meaningful when I could read and ponder info from people in the same boat as me...closer to my own perspective...

And, its interesting to learn that we are in the golden age of Hep c treatments, and I'm here, just in time, to reap the benefits. I seemingly, had no trouble securing the epclusa prescription, it was timely anyway, and was able to start treatment very soon after Dx. I'm a lucky guy.

I was very relieved to read about the 'brain fog" that many people referenced as I had no context for my own loss of mental acuity...and emotional sensitivity. Once I realized I was sharing this same Sx with others, I became perfectly content to ride the thing out..and I am...I even find it kinduv amusing looking at it from a third person POV. Anyway, the world can prolly use a little more sensitivity.

Because I got this brain fog thing in spades, but realize I can handle it, I'd be happy to avail myself to anyone who might need reassurance as to the benefits of being dumb, sensitive and cured...

Thanks again for sharing in my progress...

Welcome, 

I too observed for a long while before joining up...hence my choice of name 

Congratulations on your fabulous numbers!

I hope your treatment is being side effect-free because of all the water you are drinking everyday. 

A        

 

Wow more good news!

Welcome here and make yourself at home.

UND !