Hep C Discussion Forum

Enavigo3891 · Senior Member

RE: Here comes treatment...meds on order

mallani · Guru

Hi Kristen,

Congrats on getting started. Just my opinion on Ribavirin..... It has a long half life and the blood levels remain fairly constant once attained. The suggested dosage is twice daily, with food. I think some fat helps absorption. The timing of the doses is not critical- I took mine with breakfast and dinner, so roughly 12 hours apart. Others have them with breakfast and lunch- just go with what suits you.

Good luck. You may get some anaemia, rash and beware the Riba rage. You are on such a short treatment, so you probably won't have any problems. Cheers.

Matt Chris · Guru

Hello Kristen

Great to hear your setup with the Meds and your Doctor is encouraging you to start.

I agree with your decision to start sooner than later, you will be busy before and after you move. So all the HepCfriends are pulling for you. The Ribavirin should be taken 12 hours apart. Also its very important to remain true to the compliance of taking your meds daily without missing.

Before you know it the 12 weeks will be over, good luck.

matt

longld · Senior Member

24 weeks is the normal treatment for Gen 3.

also, I thought Riba had to be taken 12 hours apart?

Enavigo3891 · Senior Member

@Hep-C Dragon Slayer - Thank you so much for the input. I've been staring at a calendar since yesterday counting weeks... "if I start here, I'll finish here" etc... My doc said to start when I'm ready - he said the ball is entirely in my court, he said I just need to call him with the start date so he can set up my blood work appointments and f/ups. Since I'm geno 2 i'll only be on Sovaldi and Riba. I've been going back and forth between starting right away and starting after we close on the house but the more I think about it I think I'm going to start asap. The specialty pharm called today, they have the Riba - that went through fine ($8 copay) but the Sovaldi requires pre-approval so the doc was sending something over today and I should hear by Tuesday or Wednesday if it's approved or if they will have to appeal.

He said the Sovaldi is one pill per day and I can take it any time of day I want. He said i'll be on 3 and 3 for the Riba (generic i guess) and he said I must take those with food. He first said to take them at breakfast and lunch but I told him that I am not a breakfast person - forcing myself to eat breakfast before work actually makes me nauseous so he said to take them at lunch and dinner then since I eat those two meals every day. Do you take yours with food? Does it have to be a big meal? During the week I am up at 5:35am each morning, I drink a cup of coffee while getting ready for work, reading the news, etc - refill my coffee "for the road" and leave for work around 6:30am. I typically have lunch at 11:30 ... home by 5pm and eat dinner by 6pm. So I was thinking I would take the Sovaldi first thing in the AM (unless anyone knows why I shouldn't take it with coffee - I MUST have coffee) ... then take Riba at lunch and dinner.

Congrats on getting through your first 28 ... Doesn't sound too bad. I can handle some fatigue and headaches however it's going to take a lot to convince myself to drink that much water! Have a great time at the concert!

@longld - I heard about the 12 wk limit on the coupon - as a Gen 3, are you on 16 weeks or 24?

longld · Senior Member

just got my copy of the Gilead coupons - they state that it covers the reduction to 5$ for only the first 12 weeks for us Gen 3 types!

Hep-C Dragon Slayer · Veteran Member

Enavigo3891, Congrats on the new tx.

My advice start as soon as you get them unless the doctor has a good reason not to.

I started 1/6/14 and on day 18 the VL was less then 15. In a week it was cut in half and second week pretty much gone.

No sx to worry about. A little fatigue day 5, 6 and 7 (maybe this was in my head more so then real). Had some head aches but added 100 ounces of water and they went away. This comes from a guy who drank zero water a day.

Was nauseated during first 7 days but then my nurse had me change times I took pills. Morning round 7 took Olysio an hour later Riba and hour later Sovaldi. Had some insomnia (again this may have been in my head more then real) but changed the second Riba to 5:30 versus 7:00 and now sleep like normal.

About to turn the corner on the first 28 days and start the next 28 day cycle.

My life style is as busy as yours, I own my own business, have three kids in college two different states and travel between those colleges on weekends more then we need to !

Don't let the tx stop your active life, before you know it, you will be clean

P.S Heading to Elton John concert tomorrow. Saw Billy many years ago when he played with Elton !

Enavigo3891 · Senior Member

That quote was from me checking it out on my own on the Express Scripts site. I know that the PA told me the specialty pharmacy does everything they can to use any and all applicable coupons and co-pay assistance. I won't know my final out of pocket until I hear back from them when they're done getting approvals and doing their thing. That $600 total for 12 weeks of treatment is from what I can tell, my worst case scenario. Which considering the fact it's an $84K treatment is all good in my book! Thank you for the heads up though because now I'll know to ask if they don't tell me that up front.

LTChaos · Veteran Member

Enavigo, Congrats! Just curious, did the pharmacy apply Gilead's coupons when they calculated your copay? Gilead has advertised that no one should pay more than a $5 copay. I know it may depend on your insurance, but it may be worth asking the question before you shell out that much money. My 12 week supply of Sovaldi will only run me $15.

Enavigo3891 · Senior Member

Happy Thursday everyone! Saw my PA today at the Transplant Center (he's such a nice guy). He said we're going to do 12 weeks of treatment: 400mg of Sovaldi once per day and 600 mg of Ribavirin I believe twice per day. Pretty sure he said 3 pills at lunch and 3 pills at dinner (200mg) but I have that written down. He said he was going to call it in to the Specialty Pharmacy they work with (who is thankfully in the same hospital as the transplant center). He told me they'd deal with the authorizations with my health insurance and arrange home delivery (pretty cool).

I wasn't home for an hour before the Specialty Pharmacy called to confirm all my personal info and my Express Scripts info. A very sweet lady said she was going to take care of everything, find out my co-pays and she'd get back in touch hopefully by tomorrow. I was laying on the couch doing some browsing on my phone when I came across all these articles about how Express Scripts is fighting the cost of Sovaldi and they've vowed to put their foot down, etc. Got me a little concerned so I did some more reading and found a forum where someone posted about logging into their Express Scripts online account and finding out how much she'd have to pay herself. Bright idea... I just did the same.

Well according to what I see when I logged in:

- the Sovaldi will be covered - my copay for 84 pills will be $405.00 (could be worse - PA told me about people who are told they will have to pay thousands).

- the Ribavirin is strange... website says I can't get a 3 month supply; I'm covered for TWO 28-day supplies, each 28 day period would have an $8 copay. Says I'll have to pay an increased amount on the last 28 day supply but won't say how much. The "Total Cost" per 28 day supply on that is $191.21 so I guess that's my worst case scenario. The very weird thing is that it says I only have 1 more fill until I pay the increased price.... Could my 1st prescription have really gone through already?

All in all: $405.00 + $16 + $192 (at worst) = $613 ... for the possibility of ridding the dragon from within me? Guess that's pretty sweet. I couldn't be happier that I have a good job with healthcare and that I just filed my taxes!

Now.... when do I start? Only thing I have going on in Feb is a Billy Joel concert on 2/9; my fiance and I both have birthday's in March as well as our anniversary; I have to travel from NC to NY in early May for a family reunion; and I'm in the process of building a house, framing should start by end of February which puts the closing around end of May - early June. I would LOVE for input from you fine experienced warriors!

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