Author Topic: Epclusa (Read 44324 times)

BillT · « **on:** July 24, 2016, 09:23:52 am »

Does anyone know if they've put it on the market yet or when they plan to?

FutureThinker · « **Reply #1 on:** July 24, 2016, 05:03:12 pm »

It's been almost a month (6/28) since it's been approved, so I would imagine it's on the market now. FT

Rich1957 · « **Reply #2 on:** July 24, 2016, 09:54:44 pm »

Epclusa is out I started it on thursday, the 21st. I'm taking it with 1200 of ribavarin. This is my third time around for treatment.

Lynn K · « **Reply #3 on:** July 25, 2016, 01:57:14 am »

Good luck Rich1957 hope this one gets it done for you!

What prior treatments have you had and how is your liver?

SomewhereinTX · « **Reply #4 on:** July 25, 2016, 02:40:45 am »

Quote from: Rich1957 on July 24, 2016, 09:54:44 pm

Epclusa is out I started it on thursday, the 21st. I'm taking it with 1200 of ribavarin. This is my third time around for treatment.

Rich,
My best to you in the journey this time around, hope all goes well.

Glad to hear this is out now.

When I went for my 4 week labs last week I spoke with our Nurse Practitioner about my wife that is Type 2b (I'm Type 1a) and was not approved for treatment by BCBS with a 4 million VL and an F1 Fibroscan result.

She said that she thinks she could now get my wife approved as Blue Cross has now lowered their requirements recently but we should wait a couple of months as Epclusa "was not in the Formularies as of yet".
Seems like things are moving faster than she thought on that.

Good news for the Mrs. as it has been hard on her to see me receive treatment while she waits since finding she had it last November.

Keep us posted on your experiences with it.

Rich1957 · « **Reply #5 on:** July 25, 2016, 07:00:16 am »

Ok My Treatments started in April of 2014. Solvaldi/ribavirin(1000) 12 wks. My vl was 3.5 mil at that time. post treatment bloodwork my vl went t 6.9 mil. March 15th of 2015 started solvaldi/ribavirin(1200) 16 wks. Post treatment bloodwork was 7 mil. Then doc said he tested further and I was co infected geno type 1 and 2. At that time he said about a new drug coming in june of 2016 that covers both geno types. Got a call on the 19th of july and had the epclusa/ribavirin(1200) the next day. My vl now is 12.5 mil and f4. Oct 5 should be my last meds and dec 28th my 12 wk svr bloodwork. Could be a good yr I hope.

MommaT · « **Reply #6 on:** July 25, 2016, 08:03:21 am »

Hi-I am 2b and recently found from my Fibroscan that I have compensated cirrhosis. My Gastro applied for Epclusa and said I would get it. A pharmacy called and my Insurance Amerihealth denied and said I need pre certification? They only applied and said Diagnosis Hep c. Now they are requesting blood work only. I asked why they did not say Hep C compensated Cirrhosis? Does any of this souns familiar with your Harvoni? I too, like your wife was afraid of Ribivirin and the older meds, so have waited for a well tolerated one. Only now I am no longer Mild Fibrosis! Scary. Any input I would love to hear from you!

BillT · « **Reply #7 on:** July 25, 2016, 09:46:55 am »

Thanks Rich.Keep us posted on how you're doing.I think you're the first at has posted that they started it.Good luck on the train ride.

BillT · « **Reply #8 on:** July 25, 2016, 09:52:53 am »

Epclusa treating a co-infections.This should be interesting.

FutureThinker · « **Reply #9 on:** July 25, 2016, 11:35:11 am »

Rich1957, fingers and toes crossed that this will be the last journey to SVR for you!! Please keep us posted on how the Epclusa train goes, and hoping it is as uneventful as the Harvoni ride....... The future is bright, FT

BillT · « **Reply #10 on:** July 25, 2016, 12:37:11 pm »

Lynn,I thought the first one I had done was under the ribs.I asked about that and it's why I found out the machine can tell him if it's getting the ribs.I need to run off but if I can find a screen shot it will explain it better.

Rich1957 · « **Reply #11 on:** July 29, 2016, 08:21:49 pm »

BillT · « **Reply #12 on:** July 30, 2016, 10:41:07 am »

You,Somewhere,and his wife are going to make it Rich.We've got so many people getting cured we're going to have to put a time limit on how long you can lead the conga line.

SomewhereinTX · « **Reply #13 on:** July 30, 2016, 01:04:12 pm »

Good to hear things are going well thus far Rich.
Your fatigue at times is what I see with the Harvoni, generally OK but sometimes the tiredness hits hard and I have a sleep pattern as yours as being usual already.

Meanwhile, our NP has resubmitted my wife this week.

SomewhereinTX · « **Reply #14 on:** August 12, 2016, 06:16:38 pm »

Quote from: SomewhereinTX on July 30, 2016, 01:04:12 pm

Good to hear things are going well thus far Rich.
Your fatigue at times is what I see with the Harvoni, generally OK but sometimes the tiredness hits hard and I have a sleep pattern as yours as being usual already.

Meanwhile, our NP has resubmitted my wife this week.

Great news a few minutes ago!
I spoke with my NP at my 4 week blood work as I stated above I was going to do.
I had her complete attention and most of the conversation on the long visit was me inquiring about my wife being turned down by the insurance company, her conditon and being depressed while having to watch me go through treatment while she could not, I start my last week of Harvoni today (8 weeks).

We just got a letter telling us that my wife (typer2b, I'm 1a) has been approved for Epclusa after our NP resubmitted her for treatment under the same conditions that they had previously denied her.

That talk helped and I also understand that more ins. carriers are getting more lax in their approvals.

We could not be happier!

BillT · « **Reply #15 on:** August 12, 2016, 07:23:20 pm »

EXCELLENT!!!I can't tell you how happy I am for you both.Keep us posted on her treatment and how she's doing.

SomewhereinTX · « **Reply #16 on:** August 12, 2016, 07:32:36 pm »

Thanks, it is so nice to see her finally relieved of worry.

BillT · « **Reply #17 on:** August 12, 2016, 07:50:47 pm »

Once you both SVR...I see a candlelight dinner in your future...

SomewhereinTX · « **Reply #18 on:** August 12, 2016, 07:55:22 pm »

Ha!
Yes, there certainly will be celebration.

BillT · « **Reply #19 on:** August 12, 2016, 07:58:54 pm »

An old gypsy taught me how to read these things.I'm 60.If she hadn't been 61 I'd have probably dated her.

SomewhereinTX · « **Reply #20 on:** August 12, 2016, 08:00:23 pm »

Quote from: BillT on August 12, 2016, 07:58:54 pm

An old gypsy taught me how to read these things.I'm 60.If she hadn't been 61 I'd have probably dated her.

That is funny!

BillT · « **Reply #21 on:** August 12, 2016, 08:13:21 pm »

We're all in this together TX.The one thing that has gotten me through this are the people I laughed with here.I can't tell you how much that did for me.Even at our worst we had each other and it made all the difference in the world.These people will always have a special place in my heart.

SomewhereinTX · « **Reply #22 on:** August 12, 2016, 08:28:23 pm »

It is a big help have others in the same boat ti talk to and support in this journey.

Rich1957 · « **Reply #23 on:** August 13, 2016, 02:56:16 pm »

Tx glad to hear about your wife. Wednesday makes a month on epclusa and ribavirin. Symptoms have been minimal. This is my third time around.Keep my fingers crossed for everyone. Hope this is the miracle cure. Have a Dr appt on the 18th for new bloodwork. I will report on everything then, hoping for good news.

FutureThinker · « **Reply #24 on:** August 13, 2016, 03:49:47 pm »

Somewhere, what a WONDERFUL post to read!! So happy for you both. I can imagine how difficult your treatment was to watch for your wife and am very happy to hear you will now both be on your paths to SVR.

The future is bright!! Enjoy your weekend, FT

SomewhereinTX · « **Reply #25 on:** August 13, 2016, 04:05:21 pm »

There is a high amount of jubilance in the house this weekend for sure!

I began Harvoni on June 24th, just 4 days before the Epclusa approval. I was close to being on that instead. Now I will have my EOT blood work sometime in the next week and a half or so.

In a way it is a blessing that my wife was denied the first time treatment was submitted as now she will get the better treatment option.

SomewhereinTX · « **Reply #26 on:** August 19, 2016, 11:29:09 pm »

Well, wife got her Epclusa yesterday and began her treatment last night, the same night I took my last Harvoni.

I go for EOT labs on Monday.

KimInTheForest · « **Reply #27 on:** August 20, 2016, 12:17:12 am »

Quote from: SomewhereinTX on August 19, 2016, 11:29:09 pm

Well, wife got her Epclusa yesterday and began her treatment last night, the same night I took my last Harvoni.

I go for EOT labs on Monday.

Congrats to both of you!

kim

SomewhereinTX · « **Reply #28 on:** August 20, 2016, 12:54:20 am »

Thanks Kim!

SomewhereinTX · « **Reply #29 on:** August 26, 2016, 12:42:41 am »

Wife began week 2 of Epclusa today and doing well with it.

I also got news today also that VL was undetected in my EOT labs.
Now the 12 week wait for my final labs, then 7 weeks after that for another elastogram (fibroscan) for them to check and see how my liver is doing. After that I should be released form the Doctor.

Didn't get numbers, though I specifically asked, but was told that my AST,ALT were within normal ranges.

MommaT · « **Reply #30 on:** September 02, 2016, 03:10:31 am »

Hi- I too have genotype 2 like your wife and tomorrow getting Epclusa - no ribavirin fed ex ed. I would love to hear something positive about taking this medication. I was so excited until my Insurance company advocate started telling me to be very careful proceeding with meds since new and it has no long term follow up to see long term effects! Well that scared and took out all my enthusiasm! Please any advice! Terry

SomewhereinTX · « **Reply #31 on:** September 02, 2016, 03:45:00 am »

MommaT, My wife began week 3 of Epclusa today and thus far has been fine without any problems or side effects noted.

We are glad that Epclusa came out as the prior alternative was not a very good option for type 2.
There will always be those that have things to say that give pause. The way that these medications work (Epclusa & Harvoni) lead us not to have great concerns long term though.
My wife is a lightweight when it comes to medicine so that she is doing fine is a good sign to me.
She can't even have blood drawn for Labs without me being there.

My best to you in the success of your treatment and I will keep this thread updated on my wife's experiences as she gets further down the road with Epclusa.

FutureThinker · « **Reply #32 on:** September 02, 2016, 12:20:07 pm »

Hi MommaT -- All of us had/have some concerns with all these DAAs, as they all are relatively new drugs. Harvoni isn't even 2 years old yet. It was my primary fear in starting treatment, the lack of long-term data. So I completely understand where you're coming from. For me, it was wait or "bite-the-bullet" so to speak, try to get cured now and get on with my life. I chose the latter and am very happy I did. I just got my SVR 12 and feel SO much better than before treatment!! My treatment course was very uneventful. I know this is not always the case, per the various posts on this forum, but in the big picture, most people are doing well with these DAAs, getting cured and getting on w/ their lives.

It's a personal decision, and you need to take a hard look at your own health status and how this disease is affecting you: how long you've had it, what your liver fibrosis score is, how fatigue is affecting your life, if your liver enzymes are increasing, etc.

You need to be comfortable w/ whatever decision you make; talk to your doctor and ask any and all questions you have, and read the studies on Epclusa. Good luck! FT

Rich1957 · « **Reply #33 on:** September 04, 2016, 08:52:24 pm »

Went in for blood work after 28 days on epclusa/ribavarin . After I got my results found he had not ordered vl. Well next blood work I will get the count. But all blood work that he ordered was fine .I go back for my second round of blood work in 11 days.Can't wait. Side affects have been minimal, mostly just head aches and acid stomach.

Shannon · « **Reply #34 on:** September 08, 2016, 01:39:28 pm »

Hi, I am Shannon, this is my first post. I was diagnosed almost 3 months ago with genotype 2b. I was just approved for Epclusa yesterday and am waiting for the pharmacy to call me about shipping. My doctor had to fight for this medicine as it was not covered by my insurance but they did approve it yesterday. I can't wait to get started as I have apparently had Hep C for 25-30 years (I am 54 years old) and it has caused some cirrhosis in my liver. I would love to hear from anyone who has taken Epclusa so I know what to expect.

KimInTheForest · « **Reply #35 on:** September 08, 2016, 03:15:51 pm »

Quote from: Shannon on September 08, 2016, 01:39:28 pm

Hi, I am Shannon, this is my first post. I was diagnosed almost 3 months ago with genotype 2b. I was just approved for Epclusa yesterday and am waiting for the pharmacy to call me about shipping. My doctor had to fight for this medicine as it was not covered by my insurance but they did approve it yesterday. I can't wait to get started as I have apparently had Hep C for 25-30 years (I am 54 years old) and it has caused some cirrhosis in my liver. I would love to hear from anyone who has taken Epclusa so I know what to expect.

Welcome Shannon! And good luck with your treatment journey. I don't have experience with Epclusa (Sofosbuvir/velpatasvir), but I am sure others here will chime in. Staying well hydrated during treatment seems to be the universal mantra.

best,
kim

Rich1957 · « **Reply #36 on:** September 08, 2016, 03:29:58 pm »

Shannon, I have been taking epclusa /w ribavirin . This is my first day of my seventh week. The only real side effect has been acid stomach. Have to watch taking something, the acids in your stomach are needed to break down the medication. So other than being tired all has been good. Five more weeks hope this is the one that works for me.

Shannon · « **Reply #37 on:** September 09, 2016, 08:55:57 am »

Thanks so much for your encouragement and personal experience with Epclusa. I start on Tuesday and will let you know how it goes. Nice to have others to talk and share with. Rich, can I ask why Ribavirin with the Epclusa? My doctor has me only on Epclusa.

Rich1957 · « **Reply #38 on:** September 09, 2016, 09:23:16 am »

Shannon This is the third time for treatment. Doc says I'm f-4 and my viral count was 12.5 mil. I've taken Sov/Rib twice over the last two years. Doc says I have geno type 1 and 2. Lucky me. Hope this works for you. Like you I've had this a long time. Is your VL up there yet. You want to make sure who your Dr is, some are really lost when it comes to hep-c treatment. And some are very versed in the treatment.

Shannon · « **Reply #39 on:** September 09, 2016, 08:21:20 pm »

Wow Rich, I am so sorry about your treatments not working but I have a really good feeling about Epclusa. You hang in there man. I have no idea about my numbers but will post after my doctor appointment on Tuesday. I have faith in my doctor, she has over 30 years experience with infectious disease and she really wanted me to have Epclusa. Thanks everyone for being there. Have a wonderful weekend!!

Phoenix17 · « **Reply #40 on:** September 11, 2016, 09:31:58 am »

Hi! This is my first day on this forum. I too will be starting Epclusa on Tuesday! I am GT -2 and can't wait to get this out of my system! I hope that treatment goes well for everyone! It's great to have people who understand what it's like to have hcv. Great to be here.

Shannon · « **Reply #41 on:** September 13, 2016, 02:07:02 pm »

I just came from my doctor and as soon as my Epclusa is delivered by UPS today, I will start. My VL is 8 million. Med was supposed to come yesterday but UPS had some issue so they promised me today. I am waiting anxiously!!

SomewhereinTX · « **Reply #42 on:** September 17, 2016, 02:44:03 am »

Well my wife got her 4 week labs back today.
Her VL was not measurable (less than 15k). She was hoping for undetected, which is always nice, but I reminded her not measurable is right there and if she is that close she may even be undetected now a few days later.
When she started Epclusa her VL was 4 million.

Oddly also today I got a call asking if I had finished my Harvoni. I replied "yes, August 18th". There was dead silence on the other end of the phone.
They were calling to set up my EOT labs which I had a month ago.

Somewhere in my files it says 12 weeks of Harvoni though I was only approved for 8 weeks. I reminded them that I wished I had been give the full 12 weeks.

Shannon · « **Reply #43 on:** September 17, 2016, 06:29:25 pm »

Somewhere in Texas, great news for your wife!! Did she have any side effects from Epclusa? I am on day 5 and have not had any at all. Please keep us posted on your wife and also your EOT labs. I hope you both are feeling better. Speaking of somewhere in Texas, I am in Texas also, in Brenham (where they make Bluebell ice cream) and it is true what they say "we sell what we can and eat the rest"!!

SomewhereinTX · « **Reply #44 on:** September 17, 2016, 11:24:25 pm »

Quote from: Shannon on September 17, 2016, 06:29:25 pm

Somewhere in Texas, great news for your wife!! Did she have any side effects from Epclusa? I am on day 5 and have not had any at all. Please keep us posted on your wife and also your EOT labs. I hope you both are feeling better. Speaking of somewhere in Texas, I am in Texas also, in Brenham (where they make Bluebell ice cream) and it is true what they say "we sell what we can and eat the rest"!!

Shannon, my wife has been doing well on the Epclusa. The biggest thing she has encountered is slight upset stomach that is not often and lasts only a short while when it does occur and is fairly minor.

I once ran into a Bluebell Rep in a store one day and told him "Good to see you , I have some Bluebell everyday" to which he replied, "Maybe you ought to see your Doctor instead."

I was overboard on it but it is so good.

elias · « **Reply #45 on:** September 25, 2016, 05:14:12 pm »

Hi:

Recently diagnosed with HCV Genotype 2. GI would like me to take Epclusa for it. I hope to be joining your ranks soon. Depending on approval. The alternative to Epclusa, as he put forth, did scare me.

I'm on Medicare, and my medication coverage is via Part D Prescription Drug Plan. It worries me greatly that I dont even see Epclusa listed on any formulary of those. I do see Harvoni, Sovaldi, and Daklinza. But not Epclusa.

I'm so much hoping this is only because its relatively new, and theyve yet to work out arrangement with Medicare plans.

I do hope GT2 doesnt fall between the cracks with Medicare.

-elias

Shannon · « **Reply #46 on:** September 26, 2016, 01:59:25 pm »

Hi Elias, I know what you mean about Epclusa not being talked about much but my infectious disease specialist says it is the best and the only drug that treats all genotypes of hep. It was not listed on my prescription drug coverage either but doctor wrote a letter of medical necessity which apparently worked.
Keep us posted and hang in there!!

Rich1957 · « **Reply #47 on:** September 28, 2016, 07:27:18 pm »

Back again.Start my 10th week on epclusa /ribavain tomorrow. Had my blood work done 2wks ago and my alt-11 ast-15. At least that is a good sign of liver function. But my Dr refused to check my vl till the end. So I hope that things are working as they should. Can't wait to stop taking this medication and get back to normal. One day can't sleep , next only want to sleep. But if it works this time I will be overjoyed. 3rd treatment in as many years. Can't wait to hear the results from everyone else who is on epclusa , to see how well it is really working. Best wishes to all. PS will let everyone know in about three wks if my vl is down from the 12.5 ml.

rk · « **Reply #48 on:** October 07, 2016, 12:19:26 am »

Quote from: elias on September 25, 2016, 05:14:12 pm

Hi:

Recently diagnosed with HCV Genotype 2. GI would like me to take Epclusa for it. I hope to be joining your ranks soon. Depending on approval. The alternative to Epclusa, as he put forth, did scare me.

I'm on Medicare, and my medication coverage is via Part D Prescription Drug Plan. It worries me greatly that I dont even see Epclusa listed on any formulary of those. I do see Harvoni, Sovaldi, and Daklinza. But not Epclusa.

I'm so much hoping this is only because its relatively new, and theyve yet to work out arrangement with Medicare plans.

I do hope GT2 doesnt fall between the cracks with Medicare.

-elias

Elias, It may come form a specialty pharmacy, at least mine did and I also think a good doctor & staff should get epclusa approved. It may take an appeal but its important they have a good staff that stays on top of the situation. One of my docs staff, that files claims and does appeals told me that. Some offices may not have the man power. Although we differ because I have an advantage plan with drug coverage. I got off the part D last year. I am GT2 as well. Just thought I would mention that, good luck to you. Rod

elias · « **Reply #49 on:** October 07, 2016, 01:17:44 am »

ty Shannon and rk:

Yes, the GI has a staff person working on insurance issues. And he is formulating a letter explaining why Epclusa is medically necessary for me. given the side effects of Ribavirin.So, at least he's trying.

Not sure how insurance co. will react yet.

Another option discussed is to switch Part D plans if one of them decides to add Epclusa to its formulary and start the "specialized prescription" process over again

Shannon · « **Reply #50 on:** October 11, 2016, 03:06:37 pm »

Good luck Elias. My doctor wrote a similar letter of medical necessity when my insurance denied Epclusa and then it was approved. I started my 5th week yesterday. I am tired but other than that I feel fine. Keep us posted

elias · « **Reply #51 on:** October 11, 2016, 03:33:32 pm »

Thank you for good wishes, Shannon. Waiting anxiously to see how they decide.

Hoping for best and bracing myself for bad news too

How long did it take for insurance to approve after denial?

FutureThinker · « **Reply #52 on:** October 11, 2016, 04:26:34 pm »

Hi Elias, while I'm not on MC I did have to jump thru several hoops w/ my insurance co. to get my Harvoni covered. I was denied 2X and then appealed to my state insurance board, who thankfully overturned the denial and made them pay for it. So, keep fighting!! You deserve this medicine and your future. Keep us posted and best of luck, FT

elias · « **Reply #53 on:** October 11, 2016, 04:28:06 pm »

Epclusa approved!!

Just got call from my insurance company!!!

Thank you so kindly Lucinda for encouraging my appeal. I feel empowered that I fought for it.

Many here on forum helped me with encouraging words and their experiences

I'm having medication sent to my dr's office where I can pick it up. Seems safer that way.

Happy to be joining the growing "Epclusa club" here

FutureThinker · « **Reply #54 on:** October 11, 2016, 04:32:02 pm »

Yay Elias!!!!!!!! So happy for you ---- THE FUTURE IS BRIGHT!!! FT

MommaT · « **Reply #55 on:** October 11, 2016, 05:54:05 pm »

Very Happy for you Elias!

See, you stuck in there and it worked!
I know I was pinching myself -when they called
I was shocked. I will love to hear how you are doing
and hope alot of stress is now gone!!

Mw2324 · « **Reply #56 on:** October 11, 2016, 06:46:30 pm »

Congratulations Elias! Wishing you an uneventful treatment. Keep us posted!

elias · « **Reply #57 on:** October 11, 2016, 06:59:13 pm »

Thanks. Trying to make arrangements to have it delivered to Dr's Office.

I called insurance. They told me it was denied.

I said: I just got call few hours ago it was approved!! She looked into it further and said. Yeah. I'm approved. And apologized

I guess earlier she had on record only the previous denial of one or two weeks ago, and it hadn't updated. This rollercoaster is a bit much. I'll be totally sure when I get my hands on my first bottle, hopefully this week or next. I'm guessing the Epclusa itself might be easier than this nerve wracking journey of trying to get it

Hey there Momma T: Thanks so much much for encouraging me with this very early on last month. I was able to make strong appeal to my GI, and he conveyed essence of it to insurance. Keeping my fingers crossed that this is real.

I believe I've had this virus since early adolescence

Phoenix17 · « **Reply #58 on:** October 11, 2016, 07:24:40 pm »

Congratulations Elias! Great news. You are right, the treatment itself will be easier than waiting and fighting with the insurance company. You will do well on it!

rk · « **Reply #59 on:** October 11, 2016, 10:58:34 pm »

Very good Elias, I am happy to hear the good news. What a relief when that happens. Let the positive thoughts flow, start the treatment & be cured. It seems insurance company's usually deny a first claim just because they can. Similar to you my first appeal was approved in a week. Do keep us informed and keep a positive attitude!

Rod

elias · « **Reply #60 on:** October 13, 2016, 11:09:44 am »

Thanks Phoenix, Rod, Mw. Shannon, and Momma T. And again, special thanks to Lucinda for fielding my many detailed questions here

And Future Thinker. You really went through this agony for about a year. Wow!! But that paved the way to make it easier on those that came after. It took me only a few weeks. Hopefully, that too will make it easier for those after me. And it will be routine.

The key in my case was: "Exception to Formulary" on Medical Grounds. Doctor's letter. In case a drug is not (yet) on their formulary. Went down in only a few days.

I'm picking my meds up at Dr's office either tomorrow or Monday.

Preparing my room after the turmoil of a month. Getting water bottles. Lots of fruits and vegetables. Reinstating my Tai Chi and gym schedule. I'm eager to get going. I'm surprised i even have a functional liver left after carrying this bug since ~age 12 when I believe I first got it. But I'm hoping for lots of healing after the HepC is gone

Gilead does have some guidance program for people on this. In case one has questions about the meds and cant get through to their doctor. They do collect lots of personal info for it, but it might be a helpful program. Seems they call you or email regularly to see how you're doing with it. Has anyone in this Epclusa group here used this? :

https://www.epclusainfo.com/sign-up-onward

Mw2324 · « **Reply #61 on:** October 13, 2016, 11:44:37 am »

Elias,
I'm really sorry to hear what you've been going through trying to get treatment. I'm sure there are many other people out there that have been or are in that same position. It's absurd how insurance approvals vary so much. I'd like to share my experience with my insurance approval, just to give some hope to others. I saw my doctor on a Friday afternoon at 3pm. He informed me that his office would be submitting the insurance paperwork for Epclusa. I was sure it would take at least one appeal because my liver was an F0, all my LFT's were in normal range and my viral load was 49,000. Monday was Labor Day. The next day, I received a call from a pharmacy at 10am informing me that my prescription would be sent to the specialty pharmacy. I received my medication on Thursday by mail, not even a week after my doctor submitted it. I had no time to prepare and my doctor still cannot believe how quick and easy it was. So again, I feel really terrible for those struggling to get treatment, but it's not always a long, hard road. Good luck to everyone.

FutureThinker · « **Reply #62 on:** October 13, 2016, 12:25:03 pm »

Thanks Elias ... but I have to admit my determination to get Harvoni was for selfish reasons in the short term ---- that said, I do hope my battle played a small role in making my insurance co. realize they did NOT have the last say in their patients' health!! It was not fun, as I know has been the case for you ---- but it is so worth it to have our futures back!!

This treatment needs to be made available for everyone, throughout the world, who needs it. It is a life-threatening disease and can be cured! I am so happy you will be starting your path to SVR. Keep us posted, FT

rk · « **Reply #63 on:** October 13, 2016, 01:38:55 pm »

Quote from: elias on October 13, 2016, 11:09:44 am

Gilead does have some guidance program for people on this. In case one has questions about the meds and cant get through to their doctor. They do collect lots of personal info for it, but it might be a helpful program. Seems they call you or email regularly to see how you're doing with it. Has anyone in this Epclusa group here used this? :

https://www.epclusainfo.com/sign-up-onward

Elias,

I called Epclusa twice, their Onward program offer help as you mentioned. I had a couple of questions. I was not sure when my hep c nurse was going to call me back. They asked me if I wanted regular call backs or stay in touch by email. I preferred not to and said I will call if needed. That was fine with them, they sent me an email about the drug and Onward. If anyone calls they will read you a series of statements. Its info and a disclaimer. It takes a minute or so then they will answer your question. If its a little to in depth they still give advice but ask that you follow up with your doctor. I never gave them my phone number only my Name, where I lived & email.

I think Epclusa being new and not on a Formulary is part of the delay and another being the price. The delays will improve but I am thoroughly convinced many insurance company's will deny the first request.
What they really care about is the bottom line and if they can get by with a denial they will. Its a test, that's why a good doctor & staff is so important. It takes knowledge to deal with them.

That's in the past now, keep us informed. Rod

Shannon · « **Reply #64 on:** October 18, 2016, 12:40:22 pm »

Hey friends!! Haven't talked to you in awhile. I started week 6 yesterday and go tomorrow for my first follow up with infectious disease specialist. I will let you know if I get my viral load tomorrow. I am very anxious about that as my count was 8,250,000 when I started.
Elias, congrats man on getting Epclusa. Hope you got it and have started. We are all so fortunate. Hope you all have a great day!!

Rich1957 · « **Reply #65 on:** October 19, 2016, 03:02:40 pm »

Hey folks back again. Hope everyone is doing well. I just got my eot bloodwork back. I have been on Epclusa / 1200 Rib . My alt is alt at 11 and my ast is at 14. My vl is undetectable. Now comes the fun part , waiting for the 12 wk Svr. Feeling the best I have in years. Even felt like some kind of withdrawal when I stopped treatment. Hope this is my last treatment , third in as many years. Well I will report again in 12 unless someone has any questions. Thanks to all that have shown support. Wish the best for all.Oh yea started treatment with a vl of 12.5 mil.

Mw2324 · « **Reply #66 on:** October 19, 2016, 04:37:15 pm »

Hey Rich1957,
Great to hear! I'm praying everything works for you! Take care.

Shannon · « **Reply #67 on:** October 21, 2016, 03:16:22 pm »

Rich,
That is awesome man!! I am so happy for you. Sending positive thoughts your way that this will be the end of your long journey my friend. Have a great weekend!

bluebird · « **Reply #68 on:** October 21, 2016, 03:42:03 pm »

Rich, what an awesome news! Congratulations!!!! We need more good news like this...

BillT · « **Reply #69 on:** October 22, 2016, 12:28:57 pm »

You'll make it Rich.Your numbers look great,but that 12 week wait is something we could all do without.Almost all of us that have been undetectable at EOT have gone on to SVR.Some that have even shown a bit of VL showed no signs at 12 weeks and all of those were on Harvoni for some reason.We've had several discussions about that.Keep the faith.

Scaredycat · « **Reply #70 on:** March 28, 2017, 02:39:24 pm »

Hi, this is my first post. So glad I found this forum as my dr is submitting for treatment this week.. Hep c genotype 2b.. VL 6 million. Contracted late 60s early 70s. DX in 2009. F4. The words my dr used was "practically cirhossis" Had an ultrasound and now waiting for him to submit for treatment. I have my labs here, but unsure what you might need to know.. I guess the only thing i have to offer is this : I knew i had hep c, but convinced myself that because i wasn't drinking, or doing drugs and had no symptoms, i was ok. . This turned out to be not true.

KimInTheForest · « **Reply #71 on:** March 29, 2017, 08:50:02 pm »

Quote from: Scaredycat on March 28, 2017, 02:39:24 pm

Hi, this is my first post. So glad I found this forum as my dr is submitting for treatment this week.. Hep c genotype 2b.. VL 6 million. Contracted late 60s early 70s. DX in 2009. F4. The words my dr used was "practically cirhossis" Had an ultrasound and now waiting for him to submit for treatment. I have my labs here, but unsure what you might need to know.. I guess the only thing i have to offer is this : I knew i had hep c, but convinced myself that because i wasn't drinking, or doing drugs and had no symptoms, i was ok. . This turned out to be not true.

Welcome Scaredycat! At least you will begin treatment soon and will almost surely be rid of the virus at last. And then your liver can begin to repair itself. Even people with cirrhosis are, in many cases, showing measurable improvement in liver health post-treatment. Good luck!

kim

MommaT · « **Reply #72 on:** March 30, 2017, 03:50:17 pm »

Welcome Scaredycat!
I am oops! was (so strange) hep c 2b and found after 9/11/2001 when donated Blood. I was mild then and BOOM got diagnosis June 2016 last year "good kind of Cirrhosis". When you get approved, which you will- cause of the diagnosis it took with my pushing Hep c office girl, Insurance Company, Manufacturer and got coupon for $5.00 Gilead -(correcting the wrong filling of form from Doctor) Honestly, if I had not worked for Medicare and knew things need pushing along it would have been months. I got my 3-28 count Bottles of Epclusa no Ribivirin cost me total $15.00 and so far 3 month after 12/9/16 End Of Treatment ...still clear. My only after effect on meds was feeling ditzy and less sleep! Not Bad at all! Scaredycat you are on YOUR WAY!
Keep positive!
Terry

elias · « **Reply #73 on:** March 30, 2017, 04:35:06 pm »

MommaT !!!

Where've you been? So happy to hear from you. And thanks again for encouraging me so early on with that insurance mess back in September 2016. Was about to run off to India to avoid Ribavirin

So... Youre UNDETECTED 12 weeks after End of Treatment?

Congratulations

You're among the first here cured on Epclusa. First of many, many more to come I hope. You just made my day

I'm EOT+12 weeks as of April 7 but wont get to take viral load test until April 14 on account of dr vacation.

I'm also still having insomnia after-effects. but that's been very slowly improving. As you know, Ive had insomnia much of my life, but it got way worse on Epclusa n seems its resolving slowly.

~elias

Mw2324 · « **Reply #74 on:** March 30, 2017, 06:52:04 pm »

Hey scardeycat,
Welcome. Keep us updated on your outcome, I'm sure everything will work out just fine. It has worked out pretty well for us, I'd say!

Momma T,
Great to hear from you and congratson your undetected! I've been hoping everything turned out wonderfully for you!

elias · « **Reply #75 on:** March 30, 2017, 08:09:26 pm »

Welcome Scaredycat:

I contracted HCV bout same time frame you did and had no idea I had it until Sept 2016. So the shock of it was overwhelming.

We're same Genotype-GT 2b and even about same initial viral load. I tested 4 weeks after completing Epclusa and was Undetected. I'll soon be at 12 week point (April 7) , and will test again..More than 99% on Epclusa clear HCV. Those with compensated cirrhosis -also ~99%

I'm looking into lifestyle factors which help repair the liver after HCV clears. in terms of regression of Fibrosis/Cirrhosis. Will share what i learn here

Good luck getting the Epclusa. Few have adverse effects on it

rk · « **Reply #76 on:** April 04, 2017, 12:16:45 am »

Quote from: elias on March 30, 2017, 04:35:06 pm

MommaT !!!

Where've you been? So happy to hear from you. And thanks again for encouraging me so early on with that insurance mess back in September 2016. Was about to run off to India to avoid Ribavirin

So... Youre UNDETECTED 12 weeks after End of Treatment?

Congratulations

You're among the first here cured on Epclusa. First of many, many more to come I hope. You just made my day

I'm EOT+12 weeks as of April 7 but wont get to take viral load test until April 14 on account of dr vacation.

I'm also still having insomnia after-effects. but that's been very slowly improving. As you know, Ive had insomnia much of my life, but it got way worse on Epclusa n seems its resolving slowly.

~elias

Congrats Momma T, good news indeed! Yes it takes someone familiar with the system or a good Doctor and staff. I was fortunate enough to have the latter.

Elias, I found a mineral that definitely helps me sleep. It is Magtein - Magnesium L-Threonate. The brand I take is from Source Naturals. The reason its suppose to be effective is because it crosses the blood brain barrier. Do your research, maybe it will help you.

In my case I take one cap a day over an hour before bedtime. The bottle suggests 3 per day. I go to sleep faster. I normally wake twice go back and to sleep after going to the bathroom. If I should wake again {about an hour before I normally get up} I usually go back to sleep another hour. It really does help me but were all different.

On a final note - I posted it under my original thread. EOT + 12 weeks HCV undetected!

Rod

Mw2324 · « **Reply #77 on:** April 07, 2017, 03:44:46 pm »

Hey guys,
I just wanted to chime in on my insomnia experience. I have not taken a sleeping pill since I began using castor oil. I originally bought a bottle of organic castor oil online to promote hair growth. I tried it on my eyelids to see if it would grow my lashes. It put me right to sleep and I looked online and it is used to treat insomnia. I apply a little to my eyelids before bed and it's great. Wish I had found this sooner!

Scaredycat · « **Reply #78 on:** April 07, 2017, 04:00:24 pm »

Still not completely sure how to use this board but heres where i am after the f4 "practically cirhossis" diagnosis. I had a liver sono, no ascities. Liver had coarse heterogenous texture, but the word cirhossis was not mentioned in report. Had an endoscopy, no varices. A specialty pharmacy called me asking about my monthly income in order to get assistance program to help with payment. Shes supposed to call back next week. Im fatalistic by nature, but trying to keep a positive outlook. I don't t drink smoke or use drugs. Crazy to think that a short period of experimentation 40 years ago would change the course of my life. Thanks for the encouragement, ill keep you updated. Genotype 2b.

Mw2324 · « **Reply #79 on:** April 07, 2017, 04:24:52 pm »

Scaredycat,
Just try to remember things could always be worse! Sounds like you're on your way to a cure. Get your water bottles ready!

Mw2324 · « **Reply #80 on:** April 07, 2017, 04:33:21 pm »

Also, Gilead has a 5 dollar copay coupon for your prescription. No matter what your out of pocket cost is, you will only pay 5 dollars. There are some restrictions depending on Medicaid I think but take a look at it. The prescription should've been about 700.00 for a 30 day supply for me, but I only paid 5 each time.

elias · « **Reply #81 on:** April 07, 2017, 05:24:11 pm »

Quote

Crazy to think that a short period of experimentation 40 years ago would change the course of my life. Thanks for the encouragement, ill keep you updated. Genotype 2b.

I'm gathering as much info as I can about reversing fibrosis/cirrhosis. Trying to limit it to scientifically based sources if possible.. One thing I do recall was an odd statistic. That those with GT 2 regress significantly more than those with GT1 . And those with GT1 a bit better than those with GT3. So for purposes of reversal this is good GT to have

elias · « **Reply #82 on:** April 07, 2017, 05:48:45 pm »

On subject of sleep:

Thanks Rod for the tip on Magtein.

And Mw for tip on castor oil. Does it irritate the eyes though in case some accidentally gets in?

I had tried melatonin years ago, but felt hangover day after. Dont recall how much sleep i got on it. But I'm planning to give this another try by taking a much lower dosage. Say : 3mg instead of the 5mg I think I had taken was back.

A good question to ask for these meds (Magtein and Melatonin) if any adverse effects on liver in terms of healing from fibrosis. No idea whom to ask

Today is my 12 week watershed from completing Epclusa on January 13. Wont know if I'm SVR for ~another 2 weeks. My test is scheduled for next Friday. Odds are in my favor, since I was "Undetected" 4 weeks after end of treatment. Was hoping to be really rested for today. Kinda mini-celebration of milestone. But , alas no such luck

Mw2324 · « **Reply #83 on:** April 07, 2017, 05:58:40 pm »

Elias,
For me, there is no irritation. Also, I'm sure you'll be undetected. It will just put your mind at ease to know for sure, I understand. But you will be celebrating soon enough!

Scaredycat · « **Reply #84 on:** April 12, 2017, 02:07:49 pm »

Back again... Still unsure if im posting on the right thread or theres one specific to people just beginning treatment. Started Epclusa yesterday, by some miracle i had a zero co payment which is such a blessing and a big weight off my mind. Took the first pill at 3pm which is not the ideal time, but its when i got the go ahead and i was anxious to begin. About 530, i started to feel some nausea. And prayed not to throw this pill up. Managed to keep it down but had a bad stomach ache and nausea that lasted till about 730 and then eased up. Im going to try to increase or decrease time by 30 min till i get to a better time than 3pm. I was afraid if i waired i wouldnt sleep, but that wasnt an issue at all. Just the stomach ache. So... So far so good

Mw2324 · « **Reply #85 on:** April 12, 2017, 02:27:24 pm »

Good to hear, Scaredycat. I chose to take mine at 5pm. I hope you find a time that suits you and have an easy treatment.

rk · « **Reply #86 on:** April 12, 2017, 02:43:59 pm »

Congrats on getting started. I got a free grant that relieved me of any financial obligations. I always took mine with food. The first time I felt a little strange an hour or so later but never had nausea. I also took everyone's advice and drank plenty of water.
Eat something soothing to your stomach. Hopefully things will smooth out.

At the top of this site is a tab labeled forums. Click on that and it brings up all the different forums. Good luck

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