Author Topic: Epclusa Graduates (Read 17253 times)

Av8tor737 · « **on:** January 11, 2017, 02:05:57 pm »

Apologies if it's been discussed before, but I can't find a thread by title. It's a new drug and if I'm not mistaken the first few generations of former Epclusa users are now walking around post treatment. I'm looking for feedback, both good and bad on Epclusa post treatment symptoms and test results. I just finished yesterday and will do my EOT blood work tomorrow. Any thoughts or experiences would be helpful.

Lynn K · « **Reply #1 on:** January 11, 2017, 08:02:55 pm »

No info about your treatment but a big congrats for finishing treatment!

Wishing you good news in 12 weeks for your SVR test

elias · « **Reply #2 on:** January 12, 2017, 02:54:58 pm »

Hi Av8ator:

My last dose of Epclusa is tomorrow, so im a day or two behind you.

I wont be taking EOT test, since it wont tell me much. I was undetected at week 4 of treatment. I will take EOT+4 week viral load and then EOT+12. The first of these will give me some measure of solace if still undetected and no relapse. since most who relapse do so within 4 weeks after completing treatment.

I have lost way too much sleep over the course of this. Probably a mix of underlying insomnia and a side effect of the Epclusa. Yes, insomnia is one is one of the sides listed in the clinical trials. Anti-anxiety meds have helped in very limited way, which makes me think much more is going on.

I will of course keep all here posted on the EOT+4week results and EOT+12. As well as other tests and symptoms after completing treatment. Especially in regards to fibrosis level. Mine is way high, and stress is probably not gonna help with that..

Quite a number of us here recently completed Epclusa or are coming close to that. So hoping and praying for good news and that real life results are similar to the remarkable results of those clinical trials

Rich1957 · « **Reply #3 on:** January 23, 2017, 10:31:26 am »

Epclusa graduate. Finished treatment epclusa/ribavirin on Oct. 12th . Jan. 4th got 12 wk eot results of undetectable. Just had a fibroscan she said was an f2. Previous was f4. Took me 3 treatments to clear it, but we are there now. It's amazing I tried to keep such a positive outlook over the last three yrs. Thought I was, but wow when you hear that you are cured, there is no better feeling. A new lease on life. Best wishes to all.

Av8tor737 · « **Reply #4 on:** January 23, 2017, 12:52:36 pm »

Fred,

Congrats on your news and condition. Obviously you didn't mention any post treatment side effects so I'll deduce there are none for you.

I'm about four weeks EOT and they have me on a monthly blood work report, which I think is excessive, but there it is. I'll update my profile numbers below for others to see.

So far my post side effects are bouts of nausea and occasional fatigue. Has me worried about relapse but we'll see as the months wear on.

Cheers,

Rich1957 · « **Reply #5 on:** January 23, 2017, 03:28:23 pm »

Av8tor737 The only side effects I really felt were extreme heart burn and tired all the time, plus I gained 25 lbs. Since treatment, I've lost 20 lbs and my energy level is through the roof. Heartburn has subsiszed.

Mw2324 · « **Reply #6 on:** January 30, 2017, 05:44:29 pm »

Av8tor737,
I just came across this post and I'm interested in seeing how everyone feels after epclusa. I'm 2 months post treatment. I don't have any notable side effects. I'm tired all of the time still but I also have a demanding job with long hours. Keep me updated, I'd love to hear how everyone is doing. I'm looking forward to my test next month!

andrew90 · « **Reply #7 on:** January 31, 2017, 07:37:34 pm »

Finished Epclusa 1/25/17

No Side Effects On Treatment or After!

Undetected as of EOT
was still detected at 5 weeks

elias · « **Reply #8 on:** February 01, 2017, 03:18:52 am »

Hi Mw and rest of the gang

I'm almost 3 weeks post-treatment. I still suffer from insomnia. Its been pretty bad since the diagnosis back in September. Got a bit worse on treatment and hasnt subsided. Getting depressed too.

Can't honestly be sure the Epclusa was main factor in this. Some is due to flashbacks from the traumatic situation in childhood which caused the Hep C. Some is on account of deep down fear of a relapse. Irony is that fear of relapse is because I was sleep-deprived thru the treatment period. So theres this fear I have that my immune was so off it didnt completely clear it. Maybe taking the EOT+4 weeks test will help some. It only helped temporarily when I was found "Undetected" 4 weeks into treatment

Mw2324 · « **Reply #9 on:** February 01, 2017, 06:25:42 am »

It's great to hear from everyone. Elias- I still don't sleep great but not too terribly either. I hit a rough patch about 2 weeks ago feeling some major depression but I can't blame it on epclusa for certain. It was just an out of the blue isolated event. I think you'll be just fine in clearing the virus but are you taking that 4 week test? Let me know the outcome.... best wishes to all!

elias · « **Reply #10 on:** February 01, 2017, 06:39:24 am »

Yeah, Mw. Ill be taking EOT+4week test. More like EOT+5week, given dr's schedule.

I think if i'm still undetected by then, ill very likely also be Undetected at EOT+12. Given the data on this..

Actually, in published Phase III studies all the Gt2's out of about 240 achieved SVR12. So I'm not sure why I feel I'll be an exception. Maybe, the bizarre lack of sleep

Mw2324 · « **Reply #11 on:** February 01, 2017, 06:59:04 am »

Yes, sleep deprivation will make the mind crazy

elias · « **Reply #12 on:** February 21, 2017, 05:43:07 pm »

Hi fellow Epcluseans:

Just got result of my EOT+4 week viral load. I remain UNDETECTED.

About 80% of those who relapse do so by week 4 after end of treatment. So this shows me I'm on the right path. EOT+12 for me is April 7. What ever my low risk of relapse were before this result, I can now consider they are about one fifth of that

I took this EOT+4 week test because deep down I have hard time believing I can ever be rid of this in spite of the very high success rates reported for Epclusa. Some of this fear is irrational obsession that I've been carrying this virus so long and it has mutated beyond anything any DAA can successfully clear. . Or that because my sleep has been so deranged, nothing will work right medically for me. Some of this is probably driven by traumatic circumstances of original infection. But so far it seems it is working as it's supposed to. Hopefully, I'll finally get some restful sleep..

andrew90 · « **Reply #13 on:** February 21, 2017, 05:46:53 pm »

That's great! My gastro doc doesn't care about anything but 6 months undetected so he would t give me the 4 weeks eot labs! But I'm trying to think if I did relapse nothing will be done right away anyways so I'm trying to hold off till 6 months eot

Lynn K · « **Reply #14 on:** February 21, 2017, 05:51:14 pm »

Hi elias and congrats on the SVR4 result.

From what I have read for Harvoni at SVR 4 the odds of being SVR12 is more like 98.5% so I would assue that Epclusa is the same or even better.

Heck the odds of successful treatment in general for most patients is around 98%

You've got this!

elias · « **Reply #15 on:** February 21, 2017, 06:11:17 pm »

Thanks, Lynn:

It should be somewhat better odds with Epclusa

My GI specialist had told me none had yet failed these with him. Not sure if he meant Epclusa or that whole category.

He had interesting theory as to why my sleep has gotten worse, not better. Less fatigue to override an underlying insomnia. It's a bit ironic because the sleep deprivation is making be more fatigued. But there's a possible point to what he said. I lie there trying to sleep and feel alert and wide awake. In the past, eventually I'd fall out from sheer exhaustion. Now, I no longer do. I cant stop those flashbacks to events from when I was 12. So many gross things going on then. He advised getting professional help with this sleep issue. I'll soon be seeing my primary care dr to get vaccinated for Hep B and maybe hep A as well. So I'll ask bout this too

Lynn K · « **Reply #16 on:** February 21, 2017, 06:33:51 pm »

Yes with you being F3 by fibrosure I would definitely think about getting the Hep A and Hep B. You don't want to risk any future liver damage

Rich1957 · « **Reply #17 on:** February 28, 2017, 10:37:48 pm »

Just thought I would put my 2 cents in again. I just got my results for svr20 and still undetected feel so much relief. When I got my last blood work done the Dr ran a lipid panel and vitamin d test. Man was I surprised cholesterol at 255 triglycerides at 165 and vitamin d at 12. Don't know if any of this is related to treatment or not. Saw some stuff about the relation of hepc and vitamin d. Think it was lower vitamin d better chance of failure. Well off to see my regular Dr on Thurs. to get some more blood work and see what I have to do now. Hope we all see our dreams come true. As I tell everyone, Everyday is a good day, some are just better than others.

Mw2324 · « **Reply #18 on:** March 08, 2017, 07:35:11 am »

Hey everyone,
Rich1957 thanks for checking in. I received my SVR 12 results yesterday and I am undetected. However, my bun/creatinine ratio is high as well as neutrophils absolute. Anyone else experiencing abnormal labs? Everything else is normal. Best of luck to all!

Lynn K · « **Reply #19 on:** March 08, 2017, 04:10:51 pm »

My only abnormal lab is my platelet count due to cirrhosis.

Absolute neutrophils I found is a type of white blood cell it had to do with infection fighting ability.

High neutrophil levels are often caused by an infection, but other medical conditions and certain drugs can cause them as well. Physical or mental stress, and even smoking, can also increase neutrophil levels.

https://labtestsonline.org/understanding/analytes/bun/tab/faq/

3. What is a BUN/Creatinine ratio?
Occasionally, a health practitioner will look at the ratio between a person's BUN and blood creatinine to help determine what is causing these concentrations to be higher than normal. The ratio of BUN to creatinine is usually between 10:1 and 20:1. An increased ratio may be due to a condition that causes a decrease in the flow of blood to the kidneys, such as congestive heart failure or dehydration. It may also be seen with increased protein, from gastrointestinal bleeding, or increased protein in the diet. The ratio may be decreased with liver disease (due to decrease in the formation of urea) and malnutrition.

You could simply be dehydrated are you drinking 8 glasses of liquids a day? What were your results like before you treated?

Most importantly have you asked your doctor about what these results mean?

Mw2324 · « **Reply #20 on:** March 08, 2017, 05:58:37 pm »

Thanks for the info Lynn. My results before were always normal. No, I do not drink as much water as I should, usually only one or two bottles a day. My doctor told me he doesn't even pay attention to the ratio. Individually, bun and creatinine were normal on these labs so he's not worried about it. He wasn't concerned about the neutrophils either. Possibly I could've been fighting something. I wasn't sick but I rarely ever get sick, not so much as a cold. So basically he told me all is well.

Lynn K · « **Reply #21 on:** March 08, 2017, 06:39:10 pm »

I would go with your doctors thoughts on all this then they are the experts.

rk · « **Reply #22 on:** March 20, 2017, 03:26:27 pm »

I am post 11 weeks from EOT on Epclusa. At 4 weeks post EOT I was undetected. Since then my sleeping varies, usually I wake early and do not feel rested. A few times sleep did not come, my mind, well it has problems and picks the wee hours to think.

In the past 2 weeks I am reliving bouts of brain fog similar to starting Epclusa and my sleep pattern is worst than usual. I have more symptoms probably not related to Epclusa but I am in process of putting it all together to become normal.

I find reliving the brain fog rather unusual. I encountered it the first 8 to ten days of treatment. Since then it went away and I felt near normal during treatment. Coming back now is kind of eerie since I thought it was gone. Now its back on and off and it feels so strange. Anyone else have fog disappear for a few weeks then return?

Will see what happens but I will post my EOT + 12 weeks after I see my doc in two weeks.

Its good to hear the positives, like being cured but I imagine negatives will trickle down as well. In most cases I guess its a small price to pay. I should say before treatment I felt normal. I never knew I was in a race with extinction. To me that is weird to say the least. Now I feel weird and I am not in a race, even more weird.
Be well all.

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Author Topic: Epclusa Graduates (Read 17253 times)