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Avatar universal

On OFF LABEL Sovaldi and Olysio!

In my 3rd week now and feeling really strong.  Without the nasty Interferon and Ribavarin this time - I have had minimal side effects and I am so very grateful!  My 2 week labs came in today and ALL of them are in normal range... including AST and ALT.  Second month of the meds have been ordered and are now on their way so stay tuned for more updates as we knock out these 12 weeks of treatment.  I truly believe this 3rd attempt to SVR will be the final one as it will be the cure I have needed using these 2 drugs!
I will keep you all posted.
Hugs and God Bless!
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Avatar universal
Hello;just wanted to reach out to people who know what I'm going through. I found out about this virus in 1998. Did the Interferon and Ribivirin many years ago with no success,and I will begin Solvadi and Olysio tomorrow. Just looking for what to expect. (Ilness,etc) Should I take these meds with food,and I also take Blood Pressure Meds(Exforge and Clonidine) and Thyroid meds(Synthroid),should I space them out. Any helpful experiences will truly calm my fears. Thanks,sanford10457
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Avatar universal
Am an expat working abroad so have expat insurance, which turns out was pretty awesome.  Very lucky.  Under an expat you are covered in pretty much any country, so chose to go back home.

But, I was looking where I could get the drugs, and also was just curious what does the rest of the world do that can't afford/or doesn't have insurance.  Hep C is a big problem in developing countries.

This is how I came across India.  Also, working here I notice that the Indians have the drug distribution channel completely controlled.  They are the ones bringing drugs to villages, so when I saw a New York Times article about Gilead doing a deal for Sovaldi with a handful of Indian companies to make a generic it all made sense.

Logic works in reverse.  People in the US can do a medical tourism trip and get the drugs they need.  Doctors at home may not support this, and might legally be concerned about litigation.  At the end of the day my understanding is that if you have not failed in the past with a protease inhibitor than standard protocol is to do Sovaldi and Olysio together.  

I am on it, and it is easy.  Two pills a night or morning with food and get blood work done at 2, 4, 8 and 12 weeks.  If they still detect virus after week 4 they might stop treatment as you are not reacting.  

But once you are on the drugs, I don't see how a doctor doing their fiduciary responsibility to care for patients is going to stop you from taking your meds.  

If there was enough people I would organize a group trip and negotiate a deal on everything from airfare to hotel stay.  Go as a group.  Not sure what to budget, but would think full treatment $4 to $5k with air, hotel, food, meds and doctor fees....  




  

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475555 tn?1469304339
Thanks for the info on getting meds in India. The idea did occur to me, but I didn't know how to go about it.

How did you get insurance and an MD if you were living outside the U.S.?
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Avatar universal
Sometimes you need to try a different path.  I just started Sovaldi/Olysio treatment and live in Southeast Asia.  I flew to the US, had a meeting with a infectious disease specialist (was ready to pay for the drugs).  Luckily, insurance came through based on a fibrotest of F3.  But, I was seriously thinking about flying to India and for those that cannot afford treatment would seriously think of this option.

Sovaldi did a deal with several generic drug manufacturers to make the pill for $10 a piece for developing markets.  Big Pharma use the Indians as they have the best pharma distribution network into developing countries.  All these drugs go there before being launched internationally to poorer countries.

This is where you can find the medication you need at the cheapest price.  Wait for the private label deal to activate (Q3'15), find the top rated International Hospital (medical tourism is a thing e.g. Fortis Hospital Bangladore), start communicating with a Hep specialist than book a flight when you are confirmed.

Instead of $84,000 for Sovaldi you will pay $840 bucks.  Plane ticket will be $1,500 and accommodation based on your budget.  International hospitals move very fast, are cheap, and have new equipment.  You don't wait to see a specialist, there is one there 7 days a week.

The off label treatment of Sovaldi/Olysio is being used on most cases except for those unfortunate people that have rejected treatment with another protease inhibitor such as Incivek.  People that have rejected a protease inhibitor are being treated with SOVALDI + RIB + INT, and results are good.  Have not seen data, but heard it is 80/90%.  Again, you can buy all of this in India and just fly home, when the deal is done in a year from now.  Also, it looks like these drugs are there now, and will be cheaper...

For those of you willing to try this path, only go to an internationally ranked hospital.  Do not order from the mail, do not work with anyone stating they have access to the drugs etc.  TRUST NO ONE, except the hospital staff and the hospitals pharmacy.

Everyone deserves treatment and sometimes you just need to go get it yourself.

Example:
http://www.therichest.com/rich-list/the-biggest/the-top-10-best-hospitals-in-the-world/

  
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Avatar universal
Yeah! Hang on we are all shooting for SVR. It's our time is right.
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Avatar universal
Oh wow your viral load was higher than mine. I was 6.1MM and now am UD week 6. I went to 43 VL in my 4th week. I could feel the virus fighting back at week 3. It was like when I first got the virus as I see in hindsight.

"Does anyone know why some doctors prescribe Ribavirin with the Sovaldi/Olysio combo and some don't? "

Doesn't it have to do with Genotype? I seems redundant. It's usually S/O or S/R and not all three.
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