Hep C Discussion Forum

Lindsmatt52 · Senior Member

RE: The SS Epclusa arrival

LamontCranston · Senior Member

Ok....the Eye Doc put me on a Prednisolone eye drop (3 times a day) but it seemed to kick up the virus in to a frenzy, so she tapered it off quickly. Too bad, I was hoping it would clear the scarring a little, so I could get a bit of my eyesight back. I have grown fond of seeing things clearly out of both eyes.
For now a topical gel, Zirgan (Gancyclovir) and Acyclovir 400 x's 5 a day.
But now were are going on some months of a gritty nasty eye thing, that is very persistent. It's like the one thing that won't just let up.

Canuck · Guru

Hm, your post is most pleasing, (and funny, love your wit and way with words BTW), but ... also confusing (always remember ... I am easily confused) ... like Tig mentioned in another thread today - your timelines are not so clear (to me anyway) - so ... if you started 12 weeks of epclusa (SOT) on Jul 28, and took your last pill at (EOT) on Oct 20, then this last UND you just got would be your EOT+4 week bloods (EOT+4 weeks would = about Nov 17).

Therefore, aprox 3 months after you finished your epclusa = your EOT+12 week draw (coming on aprox Jan 20), this will then be your "official" EOT+12 week SVR draw. Do I have that right now? And, your "final"/final SVR draw should happen on about mid-April, that woud be your EOT+24 week SVR draw. biggrin

I am SO glad for (most of) the outcomes in your report, you did SO well on the epclusa!! That vel IS WONDERFUL stuff! And I love the way they gave you so many PCR's, so you could track your lovely UND's (including that EOT+4 week one too!). Nice, they certainly didn't hold back the PCR testing budget on you. I am so very happy the guts are behaving better, but really, I am quite MORE than disturbed and disappointed about this eye thing. Very grr! What is the opthalmologist's plan now!! She spoke of "further therapy" after you were off epclusa? What ever happened to that?

I'm very happy for your EOT+4week UND, that looks real-ly, real-ly good on you! wink C.

LamontCranston · Senior Member

These Livers Deliver, when given half a chance, eh?

Just in from my Pharm/NP and my 3month follow up labs are as follows:
_______
On November 20,2017 there was no Hepatitis C virus detected. We will check again for the final time on January 22, 2018.
________

So...that looks good. The Herpes Eye thing still a little bothersome, but eyedoc looked at it today and said the infection is improving-ish. Unfortunately now have scarring square in front of pupil, and a loss of vision-clarity. Eye Doc says I am the 3rd person she knows of who had an ocular shingles or herpes outbreak during HepC treatment. She said that isn't a conclusive finding since most do not report any other viral outbreaks during treatment. She says it's more like "one of those things the ****-fairy brings when you think everything is peachy" (her exact words)

Still improving digestively, too, as if it were a Horror Film played in reverse. It starts out all hopeless and creepy and gets better with every scene, until all is OK.

Canuck · Guru

In answer to your ques (a few rows down) ... YES, I DO! I do think livers (and guts) can bounce back astoundingly/amazingly fast (just like that, just like some of those good changes and things you have been noticing and commenting on), of course it will not be exactly so for everyone, and many will not agree on the speed of things, especially in regard to regeneration of long standing liver tissue injury, high to low fscore reductions happening quickly, etc. ... but as far as some the differing extrahepatic manifestation we all seem to experience to differing degrees, I do think we see people "start" to do an almost immediate shift into reverse (reverse, in the best possible way and meaning) - I think this "shift" can start to happen the minute we get an inflammation break, and can continue fast or slow but exponetially-on from there, sometimes it is only demonstrated with our continuing labs, but really nice when we can actually discern/"feel" the differences/improvements, sooner rather than later. JMO biggrin C.

LamontCranston · Senior Member

Canuck wrote:
Geezers! Take that back. Even though your nice gal chose to "rob the cradle", numbers really do not matter. Just look at Tig for example ... old as dirt, yet he is remaining 60 forever. My .....
Hey I know the Sylvia!, drove by it, admired it from the outside, had studied it and its pictoral history on internet too. Neat building and neat spot. Love how it gets engulfed in the green to red ivy! I'm not any kind of cyclist, more a walker-type, but your trip and being in and around English bay and Stanley sounds like a lovely plan. I trust it will be smokeless for you, although the forest fires have not had such a smokey effect down in Vancouver - you can always nip over to Long Beach and the open ocean breezes to clear the air should it still be hazy in Vancouver by that time.

The Sylvia may be an old apartment house, converted to a hotel, but it's charming the way European hotels are. the Ivy climbing up the walls is a nice touch, too. It's incredibly reasonable in price, too, even if the Loonie is hanging around 80cents US. Vancouver would be my choice of cities to escape from our Psychiatric Emergency of Pennsylvania Avenue . But no refugee status, yet.

LamontCranston · Senior Member

Canuck wrote:
Oh good, if you vanish again, we'll know one place we can find you!
Hope you are rounding a corner, and will find yourself more over the hump of some of those "ill" feelings. Never was anyone more suprised than me! when discovered I could douse my small headaches (actually so quickly and quite successfully) just with my water intake alone! I've always been a slow learner, wish there was an ap for that!
4 weeks!?, so did you have your 4 week draw? C.

Yes, they jabbed me yesterday afternoon. My ALT/AST #s are still bumping along in high teens, low 20's. The labs at 4 weeks showed NO Virus, same at 8 weeks. Epclusa doesn't mess around, it cleans up.

LamontCranston · Senior Member

That went fast! (Last Epclusa was last night)

And I actually am starting to really feel better, especially digestive/gut issues. They seem to be fading in to the rear view mirror, already. Can a liver get well that fast?

Canuck · Guru

Oh good, if you vanish again, we'll know one place we can find you!

Hope you are rounding a corner, and will find yourself more over the hump of some of those "ill" feelings. Never was anyone more suprised than me! when discovered I could douse my small headaches (actually so quickly and quite successfully) just with my water intake alone! I've always been a slow learner, wish there was an ap for that!

4 weeks!?, so did you have your 4 week draw? smile C.

LamontCranston · Senior Member

Canuck wrote:
Hey I know the Sylvia!, drove by it, admired it from the outside, had studied it and its pictoral history on internet too. Neat building and neat spot. Love how it gets engulfed in the green to red ivy! I'm not any kind of cyclist, more a walker-type, but your trip and being in and around English bay and Stanley sounds like a lovely plan. I trust it will be smokeless for you, although the forest fires have not had such a smokey effect down in Vancouver - you can always nip over to Long Beach and the open ocean breezes to clear the air should it still be hazy in Vancouver by that time.
That will be a very nice celebratory trip for you two. Can't wait for you to be rewarded with your first UND buddy!
Hey, your good rendition of how it was coming down off steroids (ripping the wheel from the stem) reminds me, I do recall now, I did have some furies on treatment, but they were really more fog/computer induced (my lack of computer skills and just my normal genetic deficiencies in grey matter alone) still cause me to want to destroy my computer with a sledge. I reacll now, how I nearly broke my clenched teeth trying not to throw the machine across the room!
Better days ahead. C.

Ah, "computer skills" are highly overrated...
...Ironically it was my somewhat extreme lack of basic computer skills that led me to a career in technology. I hated the idea that some beige box was an inscrutable and untameable entity. While I had stopped working due to the onset of MS, I enrolled in a Community College where I achieved my goal of making computers, and the networking gear that connects them, my ****es. The most important revelation came in the first week or so of classes, that Computers are just High-Speed Idiots. Once that sunk in, I was totally cured of my previous machniphobia. Is that a word?

Anyway, I love the Sylvia! And English Bay and well you know Vancouver is just Vancouver, isn't it? A stroll down Denman, then down Robson or Davie to one of many great eateries, or anywhere on the West Side.... I can't wait.
First day, will be sushi stuffing at http://www.samuraisushi.ca/downtown.html

-- Edited by LamontCranston on Wednesday 23rd of August 2017 01:36:47 PM

Canuck · Guru

LOST

Male, missing for a while now. Last seen here. Just disappeared. No recent pictures available but he is older and taller than shown in this photo. If you see him please leave details here. heehee

Reward if found.

Canuck · Guru

Geezers! Take that back. smile Even though your nice gal chose to "rob the cradle", numbers really do not matter. Just look at Tig for example ... old as dirt, yet he is remaining 60 forever. My partner is 75 with a cardiovascular system and new penny memory of a 20 year old I. I think you (for all your efforts here in tackling this draining harming virus) have just given yourself a backward roll on the clock!

Tig said it well ... "to realize how much this disease has affected you. I found that many small things, that I hadn't even thought about, disappeared. One day, an ache or a pain or something that just always seemed to be there was gone" ... that's exactly how i felt/feel, revelling in the smallest weird surprising improvements that have surfaced. Weird how joyous I was to loose even those small funny things, that I never understood, as to why they existed - I understand now tho!

I agree, you should be "so" optimistic, because you got epclusa. It's a done deal.

Hey I know the Sylvia!, drove by it, admired it from the outside, had studied it and its pictoral history on internet too. Neat building and neat spot. Love how it gets engulfed in the green to red ivy! I'm not any kind of cyclist, more a walker-type, but your trip and being in and around English bay and Stanley sounds like a lovely plan. I trust it will be smokeless for you, although the forest fires have not had such a smokey effect down in Vancouver - you can always nip over to Long Beach and the open ocean breezes to clear the air should it still be hazy in Vancouver by that time.

That will be a very nice celebratory trip for you two. Can't wait for you to be rewarded with your first UND buddy!

Hey, your good rendition of how it was coming down off steroids (ripping the wheel from the stem) reminds me, I do recall now, I did have some furies on treatment, but they were really more fog/computer induced (my lack of computer skills and just my normal genetic deficiencies in grey matter alone) still cause me to want to destroy my computer with a sledge. I reacll now, how I nearly broke my clenched teeth trying not to throw the machine across the room!

Better days ahead. biggrin C.

LamontCranston · Senior Member

We both had our noses to the grindwheel for a lot of years, so it is nice to be able to stop working and enjoy life a little, even if we are a couple of geezers, 65, 67 years old.

My wife is still running 5-6 miles a day, every day, at 67 y.o. I would, too but my MS ended my running days, rudely, since I too, liked to start every day with a long run on the local trails. I can still walk/hike pretty well, though and hold out hope that somehow I'll be able to really run again. But at any rate, I still have my fishing/motorcycling, and a little guitar playing so there is no lack of things to do. My wife is the catalyst for the travel we do, I just hang on and say my Hail Marys so the planes don't crash.

Tig · Admin

I'm a better egg flipper, too! Whatever it takes, Lamont! I like the sound of your message today. I sense a great deal of confidence and that's what this is all about. Approach treatment with a positive attitude and lots of water, lol!

I envy you your ability to pick up and just go when the opportunity presents itself. You and your wife sound like a fun couple and it's nice to see people able to enjoy life the way you do. When you're done with treatment and start to witness the healing that SVR ignites, I think you're going to realize how much this disease has affected you. I found that many small things, that I hadn't even thought about, disappeared. One day, an ache or a pain or something that just always seemed to be there was gone! When several things like that happen over time, you start to realize how much this disease impacted your life. It doesn't just affect our liver, but mind, body and soul!

Keep up the good work and if you're lucky, some additional frisky may return, too! Better advise the Mrs. to invest in a good pair of running shoes, ha, ha! biggrin

LamontCranston · Senior Member

When you're driven by a chemical process, that is somewhat out of your control, it's always good to try to take a step outside of yourself. I recall doing a prednisone taper back when I was first diagnosed with MS, I nearly pulled the steering wheel off the stem and whipped it out the window of my car when someone cut me off in traffic.
I also got very frisky, and pursued my wife like I was a brainless 19 year old....
Ah chemicals!

And yes, if I had been out on the coast road, there aren't as many discreet bushes as you would like there to be....

My diet is pretty much what the wife decides it is going to be, except for breakfast, which she has assigned to me. I am the better egg flipper, toast-timer, and potato fryer. Pancakes sound good, too, right about now...

As you note, in some other sense, I am feeling a bit better, perhaps the liver is already getting a bit better at al the things it does? Day 9 now, so I am a little ways down the road. I have my first labs on the 21st right before I start my next 28 day refill.

I am so optimistic, we've booked a week at the Sylvia on English Bay in Vancouver for the week after treatment, hoping to rent a couple of bikes and ride through Stanley Park and all that B.C. stuff.
-- Edited by LamontCranston on Tuesday 8th of August 2017 12:54:13 PM

-- Edited by LamontCranston on Tuesday 8th of August 2017 12:56:39 PM

-- Edited by LamontCranston on Tuesday 8th of August 2017 01:01:36 PM

Canuck · Guru

Oh Lamont!

Well, that trip to Costco was the sh-ts, eh!

Gee, I am sorry about that, that didn't sound nice at all, (your "outing") the painful/sweaty/fainty part. Glad you got into the recovery mode at home now, with replenishing the fluids you lost! I can't think of much worse, unless you had been motorcycling when it hit you, no where near a restroom, having to stop at the side of the road with the tourists passing by! Comparatively, Costco is the place to go.

Hope you feel right as rain tomorrow.

See-saw bowels - why can't there be some predictability to these things! Hopefully things are going to calm down now, and fingers crossed, not see-saw back the other way.

It's the goldilocks paradox that you are needing - not too ___, not too ___, juuuuuust right. smile

If it is any consolation, you can gloat in the thought that you maybe divested yourself (evicted) about a million vestiges of dead dragon waste.

You mentioned (somewhere, if I am not mistaken) you were feeling a bit "volcanic" (temper-wise), are you really?, feeling a little on the testy side? If you are, it's justified, you are entitled, as a side (of everything you are being forced to go through), feeling irritable certainly cannot be faulted.

I didn't notice if I was, or wasn't, bad tempered while i was on treatment (I'll have to double-check that with the boss, I am pretty sure that fact will be emblazened on his memory), I was just mostly too bagged and sleeping too much to have time to be devoting that energy to temper (but, I was bagged like that before treatment too). Though ... I do recall, prior to treatment when I was spiralling downward and fatigue sleeping, I DID have volcanic reactions to being awoken!! My partner had to learn to walk big quiet circles around these sleeping marathons (or otherwise impromptu all-day exhausted napping jags). I only had short bouts of insomina (due to stress) for extremely limited periods (I only had enough energy to wake up to be be stressed and then go right back to sleep, exhausted by the stress I guess). (World's shortest insomniac episodes ever I think.) Boy, I had to be really worried or upset for ME to stay awake! He couldn't win with me, when I slept through something important, he would be blamed for NOT waking me up for it, and if he woke me "unnecessarily - oh my! (He was and IS my best friend! - never could I have done so well, had he not been there for me, and he was, a real saint). I hope your buddy is understanding and helpful too.

I sorta blamed the third drug (vox) I was on for it, but I did have bouts of experiencing some weird "jittery-ness" element at the very same time as my (pre-existing) mind numbing fog, which when blended with the debilitating fatigue I would occasionally surface from - man, it was a weird-feeling mix, to combine them all at the same time - try doing public math under pressure in that state! Bits of my grey matter sputtering irresistible attempts, but to no avail, with all else useless to the task - always fulminated in a fugue state. I just went with it - things did lessen and improve for me. I am still betting MANY things for you, health things, aside from loosing this virus that no one should have to go through, will improve!

Hope you are sticking to a blandish diet, considering all. Something kinda "middle of the road" given that your gut swung one way and then the other. TLC and gentle as we go. Take it slow and easy. A better day tomorrow, one day nearer the goal. Week 2! biggrin C.

Tig · Admin

CUPCAKES!!! That's what I'm talking about! I bet those put Hostess to shame? Yum! By the way, I found some Peet's coffee and am enjoying a cup as we speak, good stuff. Thanks for the recommendation. It works well in the Keurig by the way, but I had to buy the ground variety, my grinder leaves a lot to be desired. Still excellent coffee!

I get the aura's too, but without headaches. Blinding sometimes, but you're right, it's an acid kaleidoscope flashback, eh? Of course I never did anything like that...... wink wink

LamontCranston · Senior Member

And got something for the kitchen....had to have it.

LamontCranston · Senior Member

Canuck wrote

I get prisms too, not due to MS, but more prodromal/heralding/aura migraine type (we figure), usually less the headache part tho, fortunately.
----------
WHAT WAS inside that bakery box! C.

Ah so. Been having the same migraine aura thing since about '91. The first time, I thought it was a latent acid flashback or stroke. I got ripping mean headaches until I started methadone for ms related pain. Now I get the electric snakes but not much pain.

Chocolate cupcakes!

Canuck · Guru

Hey Lamont,

Skimming this thread (what with you mentioning that after you played your Fender for a while, you wandered out for a sweet treat fix, that you were having odd feelings/sensations, enjoyed the long windy road tripping through a forest with kaliedoscope eyes, hugging trees, leather sandals, want to go to cool places??), makes me wonder if you are on drugs or something! Oh ... I forgot, you are! Epclusa! heehhee - JUST KIDDIN' YA! How does the epculsa war go? We'll worry if you go stealth, we need a blow by blow. Hope all is going swimmingly. One week done?

I get prisms too, not due to MS, but more prodromal/heralding/aura migraine type (we figure), usually less the headache part tho, fortunately.

If you see some twinkly stars now and again out of the corner of your eye, that could also just be some of that nice magic Polaris stardust sprinkling through you.

WHAT WAS inside that bakery box! C.

LamontCranston · Senior Member

You should see the Birkenstockers all queued up at Muir Woods during Summer months. It makes me want to turn in my Treehugger Membership card...

The real attraction are those twisty roads on the way to Muir Woods...
Like many cool places, it is a victim of it's own popularity.
www.visitmuirwoods.com/

Having MS prepares you for seeing things in a kaleidoscopic frame....things can be odd, and well, it's normal.

Tig · Admin

I have heard from others that they noticed some tinnitus with the Sovaldi (Sofosbuvir) backboned treatments, but it didn't last. During the two or three weeks, people seem to go through an adjustment period. No wonder really, all of these drugs are powerful and affect every part of you. I think that will level off for you, but the tinnitus and vertigo have been mentioned before. If you don't have the Epclusa Monograph, you can review it HERE. This is the manufacturers literature, so don't freak out when you read all the reported possibilities. You'll see that most adverse reactions occurred in <2% of all trial participants. It's an interesting read if you care about the fine print stuff. You might want to add a speed reader to your browser though or you might be finished with treatment before you're through it!

Now, one thing comes to mind. Sitting in front of a reverb while dealing with tinnitus and chasing tourists on your bike while dizzy, may not be the best idea! But what the heck, if you're going to do it, chase one for me, ha, ha!

LamontCranston · Senior Member

Tig wrote:
A nice bowl of steel cut oatmeal will tighten you up! Glad to hear you're in good spirits and still with us after Dose #1 Keep pounding the H2O!

Oh, no, I am Thrilled , to be set free, I am sure the water isn't hurting either. If things don't change much over the course of treatment, it will be almost unnoticeable.

I felt just slightly dizzy about an hour after I took the first pill, and do have a little ringing in my ears, but that could be from the 3 hours of sitting in front of a Fender Reverb and restringing a couple of guitars.

I've had an ongoing assortment of odd symptoms/feelings/sensations for a couple of years now, so I am not jumping to the conclusion that Epclusa is causing anything.

I may even get on the bike today and go scare some tourists out on the Coast, always good as a distraction.

Tig · Admin

A nice bowl of steel cut oatmeal will tighten you up! Glad to hear you're in good spirits and still with us after Dose #1 wink Keep pounding the H2O!

LamontCranston · Senior Member

Canuck wrote:
Now, now Lamont - be nice! Bite the hand that feeds ya and all that. I know you just got the best back-up buddy in a bottle, EVER!, bravery pills, and, you must be feeling quite bolstered with that first one down the hatch ... but, we can't pick-em! Personally, I LOVE Gilead, warts and all, but then again I was easily star-struck! Enjoy your first night with that magic star-dust sprinkling down throughout every molecule of you, fixin what ails ya. Sleep well tonight, you are on your way. Rest up, you are going to have a busy day tomorrow, lugging all that water around, managing the sluice gates. C.

Well, Gilead will be just fine, judging from the stock price, which seems to be doing well. One thing, though, Foster City, where they are located, is going to be underwater within my lifetime. It's built on landfill in San Francisco Bay, and much of it it going to be Below Sea level. Look for a relocation in the next decade..:)

Ok, I already like this drug. I had been mildly constipated for a few days prior to the first dose, and this AM I was rewarded with a loose caboose. Not going to be a cost-effective long term solution but I am betting my beleaguered digestive system will be functioning way better once the virus is banished and my liver can do it's job without interference. Enjoying my 3rd pint jar of Hetch-Hetchy water now.

Canuck · Guru

Now, now Lamont - be nice! Bite the hand that feeds ya and all that. I know you just got the best back-up buddy in a bottle, EVER!, bravery pills, and, you must be feeling quite bolstered with that first one down the hatch ... but, we can't pick-em! Personally, I LOVE Gilead, warts and all, but then again I was easily star-struck! Enjoy your first night with that magic star-dust sprinkling down throughout every molecule of you, fixin what ails ya. Sleep well tonight, you are on your way. Rest up, you are going to have a busy day tomorrow, lugging all that water around, managing the sluice gates. biggrin C.

LamontCranston · Senior Member

Tig wrote:
Isn't that price incredible? Considering what the same generic prescriptions cost from one of the overseas pharmacies, it's almost criminal. We need to raise hell when the opportunity presents itself by letting our elected officials know we're tired of this nonsense. How many billions do they need to make? Haven't we all paid a high enough price? I think so...
You're a lucky man, Lamont, with some awesome insurance! You're going to sail right through to victory. Start planning the party Brother, it'll be a good one!

I traded for some Gilead stock last week, but I doubt that a handful (8) shares will give me much clout. Although the CEO looks like he needs the money to attract friends...

martin.jpg?h=135&la=en&w=139

Tig · Admin

Isn't that price incredible? Considering what the same generic prescriptions cost from one of the overseas pharmacies, it's almost criminal. We need to raise hell when the opportunity presents itself by letting our elected officials know we're tired of this nonsense. How many billions do they need to make? Haven't we all paid a high enough price? I think so...

You're a lucky man, Lamont, with some awesome insurance! You're going to sail right through to victory. Start planning the party Brother, it'll be a good one!

LamontCranston · Senior Member

Thanks for the great Launch!

Note: When I looked at the receipt in the Pharmacy, it said...

"Your Drug Benefit Saved you $26,028.00 after your $9.25 Co-pay.

Holy Cow.

-- Edited by LamontCranston on Wednesday 26th of July 2017 08:19:37 PM

Tig · Admin

Yeah!!! That's what we're talking about! Hard to believe that little bottle holds about $30 grand.... I'm so glad to see it in your hands. No get the engines fired up, your cruise is about to begin.

Canuck · Guru

THAT'S the ticket! oh boy, oh bouy! biggrin C.

wendyo · Guru

Ships Ahoy matey!

And no my DQ friends I did not say chips ahoy.

Set sail in peace my friend. Smooth journey.

LamontCranston · Senior Member

The Epclusa sailed in to port this afternoon, with an all-OK signal from Admiral HMO to start today. First dose is set to go at 21:00 Hours. PDT. I'm ready, and even forced myself to buy a couple of Hostess Cupcakes to celebrate.

Canuck · Guru

Noooo, Tig. Never will we suggest for Lamont that rough ride my poor, poor old pal Linux had to endure on the poop-deck of SS riba. Only, First class and smooth sailin all the way, for Lamont on SS epclusa. biggrin C.

You are doing so well, with all this waitin stuff Lamont - I did not fare so well with the purgatory of waitin, lost it couple times, I was not at my best (to say the least) during that period. But for you (surely!) it won;t be long now! smile We keep sayin that don't we! hmm C.

Oh, the changing from 2 to 6? It was a weird "look-alike" thing that I guess 2's can magically (rarely) do. He was just doubly-lucky (as a true 6) that that's how he got included in a trial looking "like" a 2, for all extents and purposes. (Hey, I just found that ref!/ story - it was in the sof/vel/sof/vel/vox thread, but I had forgotten it was not a 2 who turned into a 6, but a 2 who turned into a 7!

___________________________________________________________________________

... This link is about a new "typed" GT7, found in a Gilead trial. Not many GT7's ever seen thus far (I read somewhere).

Gilead was enrolling GT 1-6's into their trial. One gentleman they chose WAS typed GT2, so, he was entered into their trial designed for GT's 1-6. Turns out ... he is a GT7!! They had to plunk him mid-stream to be over in the "other" category, until it could be sussed that he was indeed not a GT2, but rather, a special 7! (fooled-ya!, I sure appear to be a 2, don't I, hee hee) So, in the end, it's nice to know - (like a little surprize bonus) to find out (accidental-like) that sof/vel happens to work good on GT7's too!! Really pan!...

http://www.natap.org/2016/HCV/hep2863.pdf smile

LamontCranston · Senior Member

Canuck wrote:
Hey Lamont!
Fi-na-lly. NOW they're talkin! ... happy long-awaited Thursday then.
Sorry for your delay, on the other thread you were mentioing an HIV test was what might have helped to hold things up (amongst, possibly, other last minute bloods the insurance/doc probably HAD to have, but still, I am surprised no HIV had been done until now.
It was one of the very first things my doc did after my HCV was confirmed, (all of them took ages to return with results) then I had the long wait (after that), 6 months later and while I was still waiting/fighting to get in my trial, I had to have all of them done all over again, and then again, more, as final prequisites to line me up for the trial acceptance. Everything had to be quite current, most had to be much more current than 6 months old, the only thing they let slide was my ultrasound (which, by that time, was near the 6 month old mark, I think). They even "re-GT'd" me, just before trial, like ... I may have switched coats? I hear tho, that that IS possible (rarely found, but, has been documneted once or twice I believe - that's an interesting read for some other day - a tested and thought GT2 got cured in an intended for GT 1, 2 and 4 trial, but turns out he was actually a GT6!). Kint be too careful with assessments I guess.
Overkill, and they insist, necessary are all the i's and t's.
A truth, that nobody should start HCV therapy without knowing exactly where they are at with hep a,b,c,d,e, etc and /or HIV. Due diligence, but really!!, why had they not done HIV prior to now ... but I beg to differ that this is any "new" rule.
My, how I am looking forward to your epclusa start and cure. I know you are more than ready to shed this thing for the better. C.

They took about 7 vials of blood on the 3rd of July, so I assumed (I know) that included everything that was needed to start treatment, so I was very disappointed to wait 2 weeks, then get a message asking me to head to the lab for another jab for HIV testing.

Else: My HMO and I have been in an exclusive relationship, except for a couple of emergencies in Mexico that were handled by a local doctor there), for 40 years. I would have thought HIV and HepC screening would have been something they had done at least once in all those years. Looking back, I had some very suspicious goings on for months (temp of 101, that came and went, digestive weirdness, dull bloodshot eyes, extreme fatigue, dizziness) and my HMO has a national program to screen Boomers for HCV...

I got the HCV test because my wife asked for one and showed positive anti-bodies, so off I went to get tested and of course I had it.

When I saw her for my annual, I wanted to make a snarky comment about her missing what now seems to be obvious to me. Even an online symptom checker showed HCV as a possible when I listed the stuff I was experiencing.

Anyway, I am grateful to Have that medical coverage, and I am fearful for the millions who don't that wind up with a positive DX for HCV.

I know doctors are overworked and can't get 'em all the time. But even so. OK, grumpy rant over.

yeah, and How Would You change GTs? Elemetary School Chemistry set?

-- Edited by LamontCranston on Tuesday 25th of July 2017 07:53:31 PM

-- Edited by LamontCranston on Tuesday 25th of July 2017 07:54:30 PM

Tig · Admin

Just giving you a hard time, lol! Doesn't matter the form of transportation, it's the final destination that counts! wink

LamontCranston · Senior Member

Tig wrote:
Congrats Lamont! It's about time your path to the cure was mapped out. I'm concerned though... You mentioned heading out on the SS Epclusa, we haven't had anyone on an ocean going vessel since our friend Linux successfully battled his Dragon over a year ago. I'll see if I can find a picture of his cruise liner, you'll love it and I'm sure he won't mind if you stow away! I'll see if we can get you a suite with a balcony, those interior berths are the pits! Keep us informed and good luck slaying your beast!
I found it!

Hmm...sure that isn't the SS Poopclusa? Or ?;)

Tig · Admin

Congrats Lamont! It's about time your path to the cure was mapped out. I'm concerned though... You mentioned heading out on the SS Epclusa, we haven't had anyone on an ocean going vessel since our friend Linux successfully battled his Dragon over a year ago. I'll see if I can find a picture of his cruise liner, you'll love it and I'm sure he won't mind if you stow away! I'll see if we can get you a suite with a balcony, those interior berths are the pits! Keep us informed and good luck slaying your beast!

I found it!

Canuck · Guru

Hey Lamont!

Fi-na-lly. NOW they're talkin! ... happy long-awaited Thursday then. biggrin

Sorry for your delay, on the other thread you were mentioing an HIV test was what might have helped to hold things up (amongst, possibly, other last minute bloods the insurance/doc probably HAD to have, but still, I am surprised no HIV had been done until now.

It was one of the very first things my doc did after my HCV was confirmed, (all of them took ages to return with results) then I had the long wait (after that), 6 months later and while I was still waiting/fighting to get in my trial, I had to have all of them done all over again, and then again, more, as final prequisites to line me up for the trial acceptance. Everything had to be quite current, most had to be much more current than 6 months old, the only thing they let slide was my ultrasound (which, by that time, was near the 6 month old mark, I think). They even "re-GT'd" me, just before trial, like ... I may have switched coats? I hear tho, that that IS possible (rarely found, but, has been documneted once or twice I believe - that's an interesting read for some other day - a tested and thought GT2 got cured in an intended for GT 1, 2 and 4 trial, but turns out he was actually a GT6!). Kint be too careful with assessments I guess.

Overkill, and they insist, necessary are all the i's and t's.

A truth, that nobody should start HCV therapy without knowing exactly where they are at with hep a,b,c,d,e, etc and /or HIV. Due diligence, but really!!, why had they not done HIV prior to now ... but I beg to differ that this is any "new" rule.

My, how I am looking forward to your epclusa start and cure. I know you are more than ready to shed this thing for the better. biggrin C.

LamontCranston · Senior Member

Finally, after a month of delays and multiple Lab-Jabbings, the SS Epclusa is sailing in to my dock.

Got this from HMO:

_____

Greetings-
I have ordered the Epclusa. Please contact me on Thursday if you have not heard back from me.
NameOfPharm NP
Gastroenterology

_____________

Now that is More Like It. What do they say? "I am sick and tired of being sick and tired?"

I am not expecting to feel like I did when I was 25 once my treatment is over, but if I feel like I did when I was 55, I'll take it. (I am 65, so expectations have to be reasonable, right?)

Funny, I saw my GP last week for my annual "EyeBrow Raising" appt. and I swear, they all seem to think that people who are sick must be imagining how bad they feel.

Updates when the pills actually happen...

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