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 am so sorry optimist you are having such a hard time
I had hep c 1b for 43 years
Cleared the virus with Sovaldi and olysio no naseau
Allot of feature and out of 84 days of treatment 6 nights insomnia
If you aren't taking ribavarin I would say you had a stomach bug
And try again
I have my gallbladder but do have illitus of the small bowel, other digestive issues too
And primary Bilary cirhosis an autoimmune disease, and hypothyroidism
Good luck on treatment
Stay out of the sun while on it
I am so sorry to hear about your "incident". I have gallstones and my hep doctor told me once that losing your gallbladder was very bad for the liver.However,be an optimist and expect that,if,this does not work....something is coming...your's isn't a lost cause.The one thing that my doctor expressed to me before I began treatment was to make sure your stomach is full before you take your meds.I suspect he was really concerned about the Sovaldi rather than the Olysio.I don't find this to be strange because at the end of treatment,I had such a bad case of indigestion,that I feared I would have to lose my gallbladder...but it went away.Make sure you speak to your doctor about what and how much you eat before taking your meds.Hope you feel better...let me know,and...keep your chin up and know that this Hep C can be beat.
Hi, so happy to be hearing all these great results and for this wonderful thread! Optomist, I had stomach trouble once with this Solvaldi/Olysio, but I figured it was because I just had a salad beforehand, and I've noticed that I really need to eat something solid beforehand, like a piece of nutbread with some healthy fat Smart Balance is what I use) or a full meal. That's just the case with any meds, with me....I do have some depression but I'm a strange case because I had a bone marrow transplant and I'm on a little bit of immune suppression. I'm not taking meds for that and the anxiety. But from what I read and hear, the majority of people do not complain of much except the fatigue...(I have that too) I just did my 4 week viral load yesterday and my second liver function tests were 10 and 15. So I'm hoping for the best! Bless you all for posting your experiences with Sovaldi/Olysio I learn so much! thanks!
I just started same combo today -- my doctor said eat food in am - wait 30 min., take both meds at same time (for simplicity since only Olysio indicates w/food, but causes no drawback with Sovaldi I gather).
I wonder why the 30 minute wait? I eat my breakfast and then take my meds right after that. I wish you wonderful success with the treatment, I know you'll breeze right through it! I have 5 more days then I'm FINISHED! Been virus free since 4 weeks. Keep us posted on your progress!
took 4 th interferon shot last night . im on interferon, ribivirin and sovaldi. have had some kick butt sx but they are better . myalgia and anxiety off the charts. they gave me vicoprophen 7.5/200 and 10 mg valium 3 x daily. is this normal. also i was under the impression i would have a liver biopsy before starting tx? any thoughts? had hep c since 2006 but only got insurance 2 months ago so thats why just now starting tx
Resumed on Saturday. everything went fine this time around. just headaches...but I get those anyway. thank you for your advise and support.
I take both pills after dinner on a full stomach.....
Gives more time to recuperate and get ready for work next morning.
Good luck to everyone!
Started Sovaldi/Olysio 10 days ago. I'm also taking Plaqumine (for Lupus). I have noticed fatigue/ insomnia, indigestion and muscle aches. All of these side effects (?) have been minimal. I will gladly put up with these minor discomforts to be hep-c free! My doc told me to take them at the same time or take one in the morning, one in the evening, whatever works best for me.
I posted this message to another thread, but since I don't know who if anyone is still reading these, I'm posting it here, too.
This is just an update on my situation, for those who have been following my seven years of tribulations with hepC and my current plight in New York.
I finally found a hep MD in NY who was willing to prescribe Sovaldi + Olysio for me. I had already spoken to the Gilead and Janssen patient assistance programs, both of whom told me I should be eligible (no insurance, advanced fibrosis, etc.) and sent me applications. However, the MD has a specialty pharmacy he works with and is letting them handle the contacts with the assistance programs. I don't know if this is the best way to handle it, but it's what I've got.
So, I'm waiting to hear from them about whether I am approved for asistance. If I'm not, I don't think I will get any more help from either the MD or his specialty pharmacy as they don't seem very interested in spending time with this.
Aside from that, none of the five trial study sites I contacted in February has yet come through with a trial for me. The two who said they would have trials in June have backed off, saying the trials aren't for me. I still have some hopes, though, as they all say there will be new trials starting up soon. Also, tomorrow I have an interview with a hep MD at a big hospital on Long Island that does trials but which requires you to become a patient there first.
So, all things considered, I'm making some kind of progress. I don't have the meds yet, but I feel I know more about how the system works back here in the U.S.
If anyone reads this who got Sovaldi + Olysio through the patient assistance programs, it would be a big help to me if you could tell me how things went for you, especially whether you had to write letters and fight for the meds after the original submissions.
Also, does anyone know if you can re-submit an application for patient assistance once it has been turned down? I'm thinking I might try another MD if things don't work out with the present one and his specialty pharmacy.
Good luck to everyone who's in therapy, and congrats to all who have been through it and cleared the virus.
Try calling this number...they are the best in NYC better than LI
212-241-0034 - liver desease program at Mount Sinai in NYC! They should be able to help.
Good luck and god bless you!
Let me know how it goes...
I went to Stonybrook gastroenterologist in East Setauket, Long Island on Feb 5.
They prescribed Solvaldi/Olysio/Ribavirin for 12 weeks as per the cosmos study.
I'm genotype 1a for 28 years.
I applied to Gilead for Solvaldi, J&J for Olysio, and Ribavirin with Karman Pharmacy..I filled out apps, faxed income info, applications, all kinds of things.. kept calling the companies , kept bugging my Doctor...I thought I was doing the right thing...After 3 weeks of this faxing , calling, etc.,
the Doc called me and said a specialty pharmacy was going to secure all the meds and send to my home. Apparently she gave them all the rx's.... I kept calling them to see whats up.
Well, finally after 2 months I got approved for all 3 meds. So I did not really need to do anything except fax over my SSD income.
J&J and Gilead both needed a letter of neccessity because Olysio and Solvaldi together is off label use. once I got that letter things began to move. J&J also wanted a letter of denial from social security for the low income subsidy, they still sent me meds while I applied for that, and the letter was due in 3 months, I already would be finished with the treatment by then, I faxed that letter as soon as I got my last bottle of Olysio.
Finally in April I had all 3 meds in my hands..It was like gold.
But, I was not allowed to start yet, i had to get more bloodwork, and I had to change or stop some other meds for another condition because they would interfere with the Hep C meds, and I had to get an ultrasound.
Then I went for orientation, and finally started on May 1.
After 2 weeks my liver enzymes were normal for the first time in 28 years.
After 4 weeks my viral load that started at 1.5 million, was now undetectable!
I still have 7 weeks to go.
Only bad side effects were anemia from the Ribavirin,
Otherwise I feel great.
So good luck...let the specialty pharmacy do the work, but keep calling them to check on the progress.
I am on SSD, only have medicare part A....no Part B, or Part D.....
And it is over $150,000 for 12 weeks....
Part D is no good, they want like a $13,000 deductable.
And I get 90% off my bills thru the Stonybrook Hosp. patient assistance program....any other questions, lemme know.
I'm having a similar experience. The specialty pharmacy told me they will take care of contacts with the pharma companies. I just had to write a brief letter and send it with my 1040s from last year to the specialty pharmacy, who called me and said they will let me know what's happening.
- What is a letter of denial from social security? How do you get it?
- Did you receive one bottle a month and stockpile them instead of taking them? That's what it sounds like from your post.
- Did Stonybrook get the specialty pharmacy for you?
The Stonybrook patient assistance program sounds great. I wish I could do it all there, but it's so far away, and I'm already signed up with this private MD in Manhattan.
I guess I'll just wait and see what happens. Even if I'm approved by Gilead and Janssen, I may get hung up on the co-pay.
To make a long story short, my husband got hep c, g 1A, from a blood transfusion in 1985 when he had leukemia. In Jan 2013, a CT scan for another reason showed cirrhosis, and a liver biopsy as well. He tried to get on clinical trials at Emory in Atlanta for over a year, and he thought he was going to be on one in in April, and made an appt with his hepatologist for clearance. Then the trial was canned. BUT our hepatologist saidhe could get my husband on Sovaldi/Olysio. The speciality drug company he used was TLC Pharmacy in Louisana. They were great. Olysio was approved almost immediately. But Gilead required that my husband apply for Obamacare ( were uninsured, but had Christian Healthcare Ministries which is a sharing program). He was approved for Alliant Solocare here in Georgia, gold plan. At first, they denied coverage for Sovaldi, but Gilead had our doctor do a letter of necessity and Alliant approved payment. They Gilead covered the $16,000 copay. We pay $5.00/month (plus the monthly premium). The sad part was that TLC pharmacy was not in network with Alliant, but they transferred the prescrips to Diplomat Pnarmacy. So after a 1-1/2 year wait, my husband started the treatment on June 4th!
A letter of denial is a letter of denial you get if you apply for extra help with Drug coverage... if you have to many resources you will be denied for the extra help, also known as a low income subsidy. The makers of Olysio require you to apply and get denied if you claim you have no drug coverage, as I do not, because I refuse to sign up for medicare part D. I am on SSD and cannot afford to pay for Part B or D..I only have part A. Which is no charge and covers major medical like hospital stays, etc.
Yes, I did receive 1 bottle a Month, so ,by the time I started I had to bottls each of Sovaldi and Olysio, and 2 mo. supply of Ribavirin...I now am on week #6 and I have all the meds for the 12 wk treatment.
Yes, My doc at SB contacted the specialty Pharm, and gave them all 3 scripts, refills included, and they did the work.....but like I said, you need to keep them on their toes...the more you call the faster it will happen.
At first I was applying on my own to all 3 drug co., and faxing them info ....but I should not have done this, because the special pharm was doing it for me, so, it was a little counter productive...but you do need to supply the drug co...with anything they ask for.
That is a strange story indeed. So many ups and downs, you must be emotionally exhausted.
I guess the pharmas can make you try to get insurance. I didn't realize that until recently. I have a feeling something similar is going to happen to me, although one of the pharma assistance programs said I wasn't eligible for Medicare and Medicaid (something about the time of year).
On the other hand, it's good of Gilead to help you by getting your MD to write the letter of necessity. It shows that the pharma assistance programs are pro-active, which is a very good thing.
Why did it take so long for the scrips to get tranferred to an in-network specialty pharmacy?
Making a cirrhotic person wait 1-1/2 years for Tx is inhuman and shows clearly how screwed up this so-called health system is. It's shameful.
Thanks for clearing things up about how it works with the specialty pharmacies and the insurance issue.
Did Olysio make you apply for coverage and get denied by Medicare? What was the point to that, if your plan A doesn't cover drugs?
Isn't it a little scary to start Tx when you only have one or two bottles of each med, since they could stop sending them and cut you off in the middle of treatment? This has always worried me, because I have seen it happen in Buenos Aires with an HIV/HCV co-infectee I know there. There was some kind of screw-up and the meds became unavailable for a while. But maybe this doesn't happen in the U.S.
I don't even have social security because I worked free-lance all my life and didn't pay in. And my income is very low, some years none at all, as I am living off savings that are invested where I get hardly any interest. I have to sell pieces of my invested savings to live. So it wouldn't be fair of the drug companies or the insurers to force me to pay for insurance. But maybe they don't care about fairness.
I have a hospital health plan in Buenos Aires, where I live part of the year, but it's cheap compared to U.S. medical insurance and covers all test procedures, which are done in-house (ultrasound, MRI, CT, bloods, Fibroscan, viral load PCR, biopsy, etc.). Medical is much more "popular" down there, and there are even lots of public hospitals where you can get excellent attention for free.
The lady at the specialty pharmacy that's handling my scrips said she would keep me updated every few days. She called me on Friday to say that all necessary paperwork was now in the hands of the pharmas. She's very nice. Of course, I am becoming a nervous wreck from all this uncertainty, despite having lived with the knowledge that have HCV for six years. I have never gotten used to the anxiety and have to take pills for it.
Good luck with your Tx. With S+O you should be okay.
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
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!
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.
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.
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!
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.
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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.
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.
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....
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
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.
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.
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.
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.
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!!!
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