Aa
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!
I will keep you all posted.
Hugs and God Bless!
Congrats skewed! I am very happy to see this posted! I remember you from another forum and the heart problems you were experiencing. I was really convinced you were not going to SVR man! This is incredible!! Treating 6wks on S/O and still SVR12 - BEAUTIFUL!!!! You are one lucky..........guy! Good for you brother! Have a Happy Hep C-Free Life!!!
JM
JM
I had to stop treatment early (at 6 weeks) with S/O but I got word yesterday that I have reached that beautiful milestone: EOT + 12 SVR!!!!!!!!!!!!!!!!!!!!!!!
EOT + 8 weeks UND! Treatment for me started to get rough. I started getting heart flutters, anxiety and chest pain and had to quit treatment at 6 weeks due to the heart flutters. BUT now I have been off of treatment longer than I stayed on and am still UND. I will keep everyone updated.
Mike716, I paid about $200 for the VL test, but since my wife works at a hospital, I received a big discount for having the test done at the hospital lab. The hospital lab outsourced the work to the Mayo Clinic for analysis.
Mike716, I paid about $200 for the VL test, but since my wife works at a hospital, I received a big discount for having the test done at the hospital lab. The hospital lab outsourced the work to the Mayo Clinic for analysis.
Oh piece of cake on S/O. The various weird sensations and fatigue that I had with each passing week are all gone now and I feel pretty good as I finish up on my 2nd month. 4 more weeks to go. I am actually thinking about living now instead of preparing to die. If you get the opportunity jump on it and good luck.
PS-I'm in the sun working in my garden daily and the sun doesn't bother me. It's the heat in the beginning of tx that had a slight affect in my head.
I can't use sunscreen because it's loaded with chemicals and I'll get liver sick.
PS-I'm in the sun working in my garden daily and the sun doesn't bother me. It's the heat in the beginning of tx that had a slight affect in my head.
I can't use sunscreen because it's loaded with chemicals and I'll get liver sick.
Hi Sanford, I am the two-week mark with Sovaldi and Olysio and have had no serious side effects. You should take both pills with meals at the same time every day. I would take the S/O at one time and the other meds at another time but that's just because in my mind I don't want anything interfering with the S/O. I doubt that it would really matter. The biggest thing is to wear an over 50 spf sunblock whenever you're outside and sunglasses. The Olysio can cause burning of the retinas if you're not careful. And if your skin is unprotected you can end up with a serious rash or burn that has put some people in the hospital. I think only 20% have this sort of sensitivity but you don't know if you're one of those are not and it is not worth taking a chance on. One thing in our favor is winter is coming and at least the sun won't be so bright and harsh.
Good luck to you and take care! Not long now and we will be free of this virus.
Good luck to you and take care! Not long now and we will be free of this virus.
Hi Stamford , I did this treatment . You will more then likely have no side effects. Excessive sun exposer can cause peeling skin. Follow the label and call the pharmacist if you have concerns about mixing meds. I haven't heard of anyone having any problems with taking their other meds with Olysio and Solvaldi
When you post a question here at med help use the post a question option to get more answers. Good luck with your treatment.
When you post a question here at med help use the post a question option to get more answers. Good luck with your treatment.
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
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....
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....
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.?
How did you get insurance and an MD if you were living outside the U.S.?
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/
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/
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.
"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.
I cannot believe it, but I paid for a viral load test (The insurance company wanted to test me at 4 weeks after SOT but I did not want to wait so I paid out-of-pocket and the nurse called today and said after only 6 days of Sovaldi and Olysio (no riba) I'm undetected. The only side effect I'm having is insomnia. I feel blessed beyond belief!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi, all. I haven't abandoned the thread, but I've had a bad summer and haven't had the heart to post.
I was approved for patient assistance for Sovaldi and Olysio in July and have received them. Unfortunately, I lost both the prescribing MD and the lab I was counting on. Without insurance, getting another hepatologist, and a lab are almost impossible it seems. So I'm stuck and am not Tx-ing yet.
I thought that, worse come to worst, I could go back to Buenos Aires and do it there. But my MDs in B.A. refuse to cooperate because the meds aren't approved there yet. So much for professional responsability.
At least the summer heat is almost gone and I'll be able to get around better soon (the heat and humidity in New York aggravate my spinal problems) and start looking for medical help again.
Life is nuts.
Mike
I was approved for patient assistance for Sovaldi and Olysio in July and have received them. Unfortunately, I lost both the prescribing MD and the lab I was counting on. Without insurance, getting another hepatologist, and a lab are almost impossible it seems. So I'm stuck and am not Tx-ing yet.
I thought that, worse come to worst, I could go back to Buenos Aires and do it there. But my MDs in B.A. refuse to cooperate because the meds aren't approved there yet. So much for professional responsability.
At least the summer heat is almost gone and I'll be able to get around better soon (the heat and humidity in New York aggravate my spinal problems) and start looking for medical help again.
Life is nuts.
Mike
I started Sovaldi and Olysio today (about 9 hours ago) So far, so good. Good luck to all of us. Our time has come!
Glad to hear about your 2 week tx with S/O. I hope to start the same tx real soon. Solvaldi was approved but we are having to appeal for the Olysio. I have been waiting a long time to treat because I would not treat with the interferon or ribavarin. I have known about 7 years I had the hep c, had to have it for at least 20 yrs. Good luck to all of us who are now getting to kill this dragon!
2 weeks into S/O and so far so good. I take mine like clockwork 1/2 hr after breakfast.Only real issues are fatigue,itchy back,[which I had before tx] and achy thighs.All very tolerable.First blood is at wk 4.Using spf 100, long sleeve [spf 50] shirts, brimmed hat,and sunglasses and with all that,limiting my exposure. Mowing lawn on cloudy days or after dinner when shaded and still taking above measures.Drinking a minimum of 80 oz water daily.[half my weight] Hoping it continues as smoothly moving forward.Very grateful.
My only bood work abnormalities on the solvaldi/ olysio, ribavirin treatment is low hematocrit and low hemoglobin...(anemia), which can be helped a bit by lowering the dose of ribavirin.
otherwist just had a headache, and hyper photo sensitivity from the olysio.
I finish the 12 week tx in 2 more days.
otherwist just had a headache, and hyper photo sensitivity from the olysio.
I finish the 12 week tx in 2 more days.
Thanks for all of the post on here, it has been very helpful. My Doc. has prescribed both sovaldi and olysio. But of course it keeps getting denied by insurance. They have appealed this since Feb of 2014. But it's so nice to hear of all of the success stories for everyone on here.
I am wondering if most of you have difficulty with high ammonia levels and low platelets along with your ast and alt ?
All of my rbc's seem to be a mess, hemoglobin, hematocrit ect.
I would appreciate it if anyone could let me know if they have these problems with their hcv.
Thank you and God bless all of you for your speedy recovery!
Lisa
I am wondering if most of you have difficulty with high ammonia levels and low platelets along with your ast and alt ?
All of my rbc's seem to be a mess, hemoglobin, hematocrit ect.
I would appreciate it if anyone could let me know if they have these problems with their hcv.
Thank you and God bless all of you for your speedy recovery!
Lisa
Eventuall the prices for the meds will go down! Once there is a competitor on the market! keep fighting and you will win
It's a jigsaw puzzle. Sounds like you handled it the right way.
I am waiting to hear from the specialty pharmaceuticals company whether I am approved for patient assistance by janssen and Gilead. If either or both turn me down, I'll go from there.
BTW, not all states are letting Medicaid pay for the HCV DAA's. There's a bog fracas about it. Could bankrupt state treasuries.
Cheers.
Mike
I am waiting to hear from the specialty pharmaceuticals company whether I am approved for patient assistance by janssen and Gilead. If either or both turn me down, I'll go from there.
BTW, not all states are letting Medicaid pay for the HCV DAA's. There's a bog fracas about it. Could bankrupt state treasuries.
Cheers.
Mike
Yeah, I made sure I got that last bottle of Olysio before I gave them the denial Letter...They give you 3 mo. to get it, so, by then you already have the meds, I was worried about possibly getting cut off, but once they commit to give you the meds, I don't think they will cut you off...see this link explaining the low income subsidy... You may be eligible for Medicaid.. which pays for drugs and all doctor and hospital costs..if you have a low income you may get it ...The Olysio people..Johnson and Johnson asked me If I applied for Medicaid, I said yes, but I was denied...so then they asked for me to apply for the low income subsidy....but, if you are not eligible for medicare...this does not apply to you
http://www.ssa.gov/medicare/prescriptionhelp/materials/pdfs/StateManual.pdf
http://www.ssa.gov/medicare/prescriptionhelp/materials/pdfs/StateManual.pdf
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