Author Topic: 5 Week Epclusa Blood Work - Still Detected ;( (Read 20763 times)

andrew90 · « **on:** December 16, 2016, 10:07:55 am »

Initial Blood Work 6.5 mil viral load

Doctors office called today told me blood work still shows detected

not what i want to hear... didn't ask much as she said i need to come in Monday to talk with doctor..

she said my viral load is 35.

guess thats promising if its actually 35.. and not like 35 million..

bluebird · « **Reply #1 on:** December 16, 2016, 11:30:11 am »

Hi Andrew! In my experience 4 weeks blood test shows the drop from 8 mil to <15, but still detected. My doc said it is normal to see detected when you have high viral load. Definitely big drop to <35 is a progress. Don't worry and don't jump into conclusions too soon. You and I have gen3a which is little harder to treat, but it is still treatable. Let me know what your dr.said, his explanation. What are your ALT and AST numbers? Did you know if your blood test done by labcorp, you can register on their site and track all your blood tests yourself? In your case you could know all the numbers before Monday, and when you'll see your dr you will know what to ask about.... Just in case...

andrew90 · « **Reply #2 on:** December 16, 2016, 12:33:22 pm »

its odd all my blood shows up on the Meridian website but not my viral load its like my doctor is hiding those from me!@ same with my Geno type test i could not view only he had it.

my AST originally was 189 as of September

my 5 week blood test shows AST in normal range of 34

bluebird · « **Reply #3 on:** December 16, 2016, 04:03:11 pm »

Andrew, sometimes to see the rest of the test you need to download and save as PDF file on explorer. Download, open then scroll down to the bottom and see if The test you were wondering about is there. My results usually show only the regular panel unless I downloaded it. iPad and iPhone normally don't show all results for me. Try it..I don't think your dr will request the lab not to show it to you.

elias · « **Reply #4 on:** December 16, 2016, 05:03:33 pm »

Hi Andrew:

My GIs office never posts results to portal until after the Dr had looked at them and after he discussed them with patient. Regardless if results are good or bad. my 4-week viral load was UNDETECTED. Yet were not posted until after a consult. So it not about hiding a "bad result"

From limited sample of those taking Epclusa here on Forum, almost half seem to have some low level residual vl at 4 week on-treatment test. Seems more common with those starting with higher viral loads. Purpose of test is to assess patient adherence. Not success of tx. A drop of more than 2 logs is considered desirable. In your case there was ~5 log drop. So I wouldn't worry about it

PS: It is possible that your bloods were done by different lab than the one doing the viral load testing. Which may be why the former did show up but the latter did not

andrew j · « **Reply #5 on:** December 16, 2016, 06:06:36 pm »

Hi Andrew,

Lots of people have a bit left at 4 weeks.

It's that general trend / huge drop they're looking for.

I had 18 left at 4 weeks (down from 1.1 million) (Harvoni).

There's nothing to worry about.

P.S. What's the duration of yr. Tx?

Lynn K · « **Reply #6 on:** December 17, 2016, 06:43:40 pm »

On treatment testing means little. The only test that matters is the 12 week post treatment test. We even has a couple of people here who were weakly detected at EOT test and week 4 post but went on to achieve SVR 12 and are now cured.

You will be fine don't sweat it

Good luck

FutureThinker · « **Reply #7 on:** December 17, 2016, 07:16:38 pm »

Hey Andrew90 -- Do not panic!! I completed my Harvoni treatment in May and reached SVR12 in August. I was still detected on my 4 week labs (30). I know how you feel. But not everyone gets those magic words UD early in the process.

Going from 6.5 mil to 35 is HUGE! They like to see at least a 2 log decrease, and you surpassed that, so do not worry. The drugs are working. And --- like Lynn K says --- the "real" lab work is the one done 12 weeks POST treatment. You have a ways to go on this journey, so sit back and take it easy.

Hope this helps ease your mind a bit -- FT

andrew90 · « **Reply #8 on:** December 17, 2016, 09:33:32 pm »

Thanks guys!

Blood test for viral load was released to the portal today so I guess your correct my doctor was probably reviewing first

Philadelphia · « **Reply #9 on:** December 18, 2016, 01:18:33 am »

I had a VL of 40 at 4 weeks.all gone by 8 weeks. Try not to panic. You are not the only one in this boat - those posting here went on to clear the virus.

Mw2324 · « **Reply #10 on:** December 18, 2016, 06:19:48 pm »

Andrew,
Keep fighting you've got this!

dragonslayer · « **Reply #11 on:** December 18, 2016, 07:46:42 pm »

Andrew, as you can see in my signature, I was even detected at 8 wks post treatment, but went on to SVR12, 24, and 48...

Have faith.. This is one of the reasons I dont much like on treatment testing.

andrew90 · « **Reply #12 on:** December 19, 2016, 11:47:11 am »

Seen my doctor today

man is the guy a Debby downer.

at least im more optimistic as he is..he made it seam like im not Undetected at 5 weeks ohh no....

doesnt want to run 8 week blood only EOT so im hopeing im UD already and by then i will still be!

andrew j · « **Reply #13 on:** December 19, 2016, 03:29:43 pm »

Weird!

If he was so worried, why didn't he order an 8-week blood test?!

andrew90 · « **Reply #14 on:** December 19, 2016, 03:42:11 pm »

dont think my doctor has ever seen anyone still Detected after the 4 week tests.

im his first Epclusa

im not impressed with this doctor and god forbid i require additional treatment i will definitely find a new doctor familiar with Hep C treatments

he actually said something along the lines of "i guess we will continue treatment as your numbers did drop but we really want to see undetected by 4 weeks"

like the fuck u stop my treatment...

i really wanted the 8 week to ease my own mind. but i guess my EOT is January 25th so its not much further.

Mw2324 · « **Reply #15 on:** December 19, 2016, 04:14:56 pm »

Andrew,
I also have a doctor who isn't the best. I'm curious as to whether or not he's ever had a patient on treatment before? It's not unusual to be detected after 4 weeks, as you can see from others. You are undetected by now, most likely. I don't think these doctors are as well rehearsed as they should be. It is possible to order lab tests online and pay out of pocket instead of going through your doctor and insurance but you are going to have to read the results yourself and the viral load test is quite expensive. I ordered my own liver panel in March because I didn't have insurance. My doctor seemed to be amazed by this, not sure why. But that is an option if you are that worried. You are almost done and then maybe you can change doctors if you feel you need to. In the meantime, don't be discouraged!

andrew90 · « **Reply #16 on:** December 19, 2016, 04:28:24 pm »

i am assuming he has done a "few" Haarvoni treatments.

he told me Epclusa is a new one for him.

definitely an option to do my own test. but yes it runs a bit of $ so i think i can hang on until the 12th week of treatment. im positive i feel much better then i actually did day 1 of treatment. hopefully its because the virus is being eradicated and will continue to be!

Mw2324 · « **Reply #17 on:** December 19, 2016, 04:30:50 pm »

Yes I probably wouldn't pay for it either since you are close to the end. I'm sure you'll feel even better after treatment. I've been done for almost 3 weeks now.

andrew90 · « **Reply #18 on:** December 19, 2016, 04:58:54 pm »

now this tops them all...

BRIOVARX called "that's my specialty pharmacy"

denied my 3rd and final bottle of Epclusa because apparently my insurance "Amerihealth" has a "2 fill limit" for a drug that requires 3....

Mw2324 · « **Reply #19 on:** December 19, 2016, 05:00:43 pm »

Briova was also my pharmacy. I'd call the insurance company directly.

Lynn K · « **Reply #20 on:** December 19, 2016, 05:23:27 pm »

I really wouldn't spend my own money on any on treatment testing. On treatment testing means little to nothing and only causes concern for the patient as it has in your case. The only test with any real meaning is the 12 week post treatment test all other tests are just noise in the machine

andrew j · « **Reply #21 on:** December 19, 2016, 05:50:57 pm »

You are going to be able to get that third bottle of meds, aren't you?

andrew90 · « **Reply #22 on:** December 19, 2016, 05:53:32 pm »

ill find out after all these calls... this is too much lol...

one lady is looking at my initial Prior Authorization to make sure it stated 12 weeks otherwise they require authorization so im sure this can be fixed....

makes me hate people even more... Prior Authorization they sent my doctors this evening was for some random Injectable drug.. not even Epclusa.. what is happening to this world.

** gotta call them in the morning Prior Auth dep closed 10 min ago

because i dont believe anyone i called again

this awesome lady Beth did everything she could and we figured out apparently the initial Prior Authorization is only good for 2 refills so apparently i just need another PA sent in tomorrow morning when my doctors office opens and it should be fine.

elias · « **Reply #23 on:** December 19, 2016, 07:51:49 pm »

Hi Andrew:

I read of maybe two other such snafus with that "third bottle" here on the Forum. They were resolved quickly enough so that they didnt have to skip a single pill.

Could it be that the specialty pharmacy mistook two refills for two bottles?

You actually only need two refills. The first bottle wasnt a refill. The 2nd and 3rd both are..My first bottle of Epclusa has "two refills remain" on the label. That might have thrown them? Who knows...

Whatever the conundrum here, it should all be resolved really fast. Just get them the paperwork theyre asking for, even if it was dumb mistake on their part

I made sure to get those refills well in advance, anticipating bureaucratic mess-ups. My specialty pharmacy worked closely with the insurance secretary to facilitate this. Saving me the anguish you had to go through

Let us know when you clear that all up. and how they were able to make so stupid an error

gnatcatcher · « **Reply #24 on:** December 19, 2016, 07:52:37 pm »

Andrew, glad to hear awesome Beth figured out the snafu. -just wanted to say your huge drop in AST is great news -- it means your liver is already healing. -Gnatty

andrew90 · « **Reply #25 on:** December 19, 2016, 08:24:25 pm »

Luckily i have 8 days left and i was ordering in advance because of holidays glad i did because last min problem would have been very annoying.

the say "2 fills" includes first bottle.

im just hoping this is fixed quick in the am and doesn't require anymore nonsense. scary when the lady on the phone says your insurance will only cover 2 fills a life time and for you to to get another 28 pills you will have to out of pocket which i do not have...

elias · « **Reply #26 on:** December 19, 2016, 08:36:56 pm »

To the best of my knowledge, there is no accepted protocol for only 2 28-pill bottles of Epclusa.

With Harvoni there is in very specific circumstances, such as low initial vl and i think also low fibrosis. This was tested out and established in trials.

It has not (yet) with Epclusa. So it would really off for them-whether insurance or pharmacy to assume that

In any case. It's good u have those eight days of slack. Hopefully, will be resolved very much sooner

gnatcatcher · « **Reply #27 on:** December 19, 2016, 08:48:03 pm »

Andrew, if it isn't fixed easily in the a.m., contact the Patient Advocate Foundation's Hepatitis C CareLine (800-532-5274 or www.hepatitisc.pafcareline.org). They have worked wonders for others here on the Hep Forums. -Gnatty

kimlav · « **Reply #28 on:** December 20, 2016, 09:28:12 am »

Hi Andrew,

What a drag that these mixups are occurring. Epclusa is clearly to be taken for 12 weeks for everyone which is 3 bottles no matter what. And, the first bottle is the initial one and refills are then x 2 so anyone telling you differently is just trying to be difficult. Wow, I know Canada's health care isn't perfect but that kind of shit doesn't happen here that I know of. No one normally loses their home and savings over becoming ill. Nor did I ever not take my kids to the doctor because of cost etc.

I took Harvoni for 8 weeks and I was detected at EOT like quite a few others here. So for sure I would have been detected at 4 weeks (wasn't tested). It did bother me though and at 4.5 weeks EOT, I was undetected and have remained so now past the 24 EOT. You will be too.

Good luck with the third and necessary final bottle.

Kim

andrew90 · « **Reply #29 on:** December 20, 2016, 09:46:38 am »

thankfully it was resolved quickly i should have my next bottle coming soon unless they halt it for some reason lol

KimInTheForest · « **Reply #30 on:** December 20, 2016, 10:45:17 am »

Quote from: andrew90 on December 20, 2016, 09:46:38 am

thankfully it was resolved quickly i should have my next bottle coming soon unless they halt it for some reason lol

Great news, Andrew!

kim

andrew90 · « **Reply #31 on:** January 23, 2017, 09:32:14 am »

Taking my last Epclusa pill tomorrow morning.

getting EOT blood done as well as i was still detected at 5 weeks.... REALLY hoping for undetected this time

gnatcatcher · « **Reply #32 on:** January 23, 2017, 10:23:52 am »

I'm really hoping so, too, Andrew. -also hoping you'll have plenty of good things going on between the blood draw and when the results are ready, so that the wait won't seem as long. -Gnatty

Mw2324 · « **Reply #33 on:** January 23, 2017, 10:35:21 am »

I'm sure you'll be fine. Best of luck ☺

andrew90 · « **Reply #34 on:** January 24, 2017, 06:22:17 pm »

Thanks guys,

took my last pill today!

12 weeks of Epclusa finished!

going for blood work tomorrow afternoon,

andrew90 · « **Reply #35 on:** January 27, 2017, 03:59:08 pm »

UNDETECTED!!!!!!!!!!!!!!!! EOT

Mw2324 · « **Reply #36 on:** January 27, 2017, 04:18:54 pm »

Congratulations

gnatcatcher · « **Reply #37 on:** January 27, 2017, 04:50:13 pm »

Wonderful! -- all the sweeter after not having completely cleared at 5 weeks.

Rosie13 · « **Reply #38 on:** January 27, 2017, 11:06:43 pm »

Andrew, I just read this whole thread & I was getting angry reading about your Dr. & his response to your 5 wk.labs...I was so happy seeing your AST number ...that told me you were really getting cured! Now we can celebrate the real thing! Hope you have a some good times relaxing after all the stuff you went through.rosie

Mike · « **Reply #39 on:** January 28, 2017, 10:42:59 pm »

Congrats, Andrew!

Best wishes, Mike

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Author Topic: 5 Week Epclusa Blood Work - Still Detected ;( (Read 20763 times)