Author Topic: Started Sovaldi/Olysio combo yesterday (Read 16453 times)

Dharn55 · « **on:** July 10, 2014, 06:56:51 pm »

I am a 59 year old male and was diagnosed in the mid 1980's with "non-A non-B hepatitis. Of course this was later determined to be HepC. The original diagnosis came up after I was found to have elevated liver enzymes on an insurance blood test. over the approx 30 years since the diagnosis I have had yearly blood tests to monitor the liver enzymes, which have varied up and down but have never gotten extremely high, and have had 3 or 4 liver biopsys in the last 10 years.

I have been lucky in that while I have chronic HepC I have never really gotten sick (at least that I related to the HepC) and in the last biopsy three yeras ago I was only level two inflammation and scarring. I considered the old treatment regimes, Interferon and Ribavarin, but given the lack of problems the doctor recommended waiting for the addition of the Protease inhibitor, and then when these were added I had and insurance coverage issue. I was also reluctant given the extreme side effects of the treatments and the low success rate for genotype 1.

In any case I followed the development of the new treatments as I feared that the disease could flare up and cause real damage. With the release of Sovaldi late last year and Olysio earlier this year I decided that I would try for treatment now. I also had new and improved insurance (thanks to Obama Care, before this I had trouble getting any coverage, with Obama Care I was offered 26 different options for insurance!!! So I am a big supporter of Obama Care). I went to the doctor in early April and had the blood tests, etc, again, but did not do another liver biopsy. My viral load was between 1 and 2 million. I really did not want to try the new meds with interferon and/or ribavarin so we decided to try for the off label treatment of Sovaldi and Olysio. He wrote the scripts on April 8th and this is where is got interesting.

I first went to the local Costco where we normally get our prescriptions filled. They did not recognize these meds and had to look them up on a computer. You should have seen their eyes when they saw the pricing! The prescriptions were denied with a note that I had to go through Briova Specialty. That same day I forwarded the prescriptions to Briova and they said they would start working on it but it might take a while. I also went on line and registered with both Gilead and Janssen and received their co-pay coupons. Over the next few weeks I worked with my doctor on the "pre-authorizations" that the insurer said i needed but the coverage was declined several more times. Gilead got involved in working with both my insurer and Briova to try to get the coverage. At one point when the coverage was still being declined Gilead did tell me that if they could not get it approved they would provide their meds at no cost to me. Then in May I got a call from Gilead telling me that the Sovaldi had been approved! I called Briova and they confirmed it but said the Olysio was still pending and that it made no sense to fill only the Sovaldi.

So I called my insurer and they then told me that the Sovaldi was approved as it did not require per-authorization (contrary to what they said previously) but the Olysio did and that it had not been submitted to their benefits manage Catamaran. So I had my doctor submit for per-authorization directly to Catamaran and tried to wait patiently. I was told a few times that things were pending. Finally last Thursday, 7/3, I called my insurer and they said there was something in the file from Catamaran and they would have to check it and get back to me. A few minutes later they called back and said that Catamaran had not approved the Olysio as it was not on the new drug formulary that was released 7/1/14 and I would have the talk with Catamaran as they wrote the drug formulary. So I called Catamaran, and the rep there said that it was the insurer that controlled the formulary not Catamaran. I went back and forth a few times and the two entities kept pointing their fingers at each other. I got frustrated with this and insisted that they both get on a conference call at the same time. when this happened the reps continued to point the finger at each other. I asked for then to get their supervisors/mangers ( I had already gotten supervisors involved). At this point they said they would both have to get back to me and that there we an appeal process, but I insisted that I wanted to know which entity actually made the decision to decline the coverage.

Well early Monday morning I received a call from the insurer, a new rep/manager who apologized and said that Olysio was in fact on the new formulary and that the prescription had been approved, they had already sent the approval to Briova and had confirmed that Briova had received it!

So I immediately call Briova and they confirmed this and started the process. Then they told me that there would be a $900/mo. co-pay. I told them that I had received the co-pay assistance coupons from both Gilead and Janssen and forwarded them to Briova. They said they coupons were n the file but I could not the coupons with my "county" coverage as this was like Medicaid. I told them I had private insurance and gave them this information again and within a few minutes they confirmed this and said my co-pay would only be $25!! I gave them a credit card and they said the meds would go out Tuesday by UPS and I would receive them on Wednesday along with a package of supporting materials, etc.

So the meds came yesterday and I took the first dosage about 9 last night. Today I have been drinking lots of water but have been feeling a little queasy and a bit out of it. Noting much though. I was even out in the sun a bit, but I am going to be careful about this in case I get the photo sensitivity that many experience. I a couple of hours I take the second dose.

I will keep everyone informed on how I am feeling. I have a blood test in early August, and about every four weeks after that. Hopefully I am on the was to a cure.

I guess the bottom line is that some insurers are starting to approve coverage ( I should note that my insurer is a mutual/non-profit entity so this might make a difference) so be persistent and keep trying.

Mamalof3 · « **Reply #1 on:** July 10, 2014, 07:25:26 pm »

Both drug companies offer patient assistance if you don't have insurance. Applications are available online. I got mine free but they also offer low company's as well.

Mamalof3 · « **Reply #2 on:** July 10, 2014, 07:26:13 pm »

Co pays not company lol. Dumb spellcheck

virgha828 · « **Reply #3 on:** July 11, 2014, 05:58:23 am »

Wow! What a fight. I go today to see my Dr. about starting the meds. This scenario has been in the back of my mind. I'm hoping it won't be as grueling but I will fight to get it. Good luck to you will be watching for your updates!

Dharn55 · « **Reply #4 on:** July 11, 2014, 09:05:46 am »

As an update I am not feeling so queasy today.

Also, I finally got a copy of the new drug formulary for my insurer, which is Land of Lincoln Mutual Health, and Catamaran, and both Olysio and Sovaldi are now on the formulary as specialty anti-virals. So both do require pre-authorization but are on the list. I think this is a good thing.

lporterrn · « **Reply #5 on:** July 11, 2014, 01:50:59 pm »

Your persistence with getting the hep C meds shows you are made of tough stuff. I hope treatment will be easier than dealing with insurance. Looking forward to reading about your experience and progress.

crysmel · « **Reply #6 on:** July 11, 2014, 08:36:11 pm »

New to the forum. Have been reading posts for several weeks to gain information on the Solvaldi/Olysio as I started the 12 week treatment for Hep C today. I am type 1 in stage 4 of liver damage. I picked up Hep C in 1964 from a blood transfusion, in the early 90’s I began to have effects, fatigue could not remember how to things that I had done for over 20 years. 3 Dr’s decided I had stress from my job so I retired in 1997 because I could not function, finally in 2005 a different Dr. found Hep C. It was in my blood work from the previous Dr’s. I tried the horrible treatment, OMG I was sick, got off of the treatment said I would never do treatment again, but my Dr. convinced me to try this new treatment, so tonight I started and feel hopeful for a cure. By the way I am 72, I may be one of the oldest to try this?

lporterrn · « **Reply #7 on:** July 11, 2014, 09:25:59 pm »

That is a long time to have hep C! Good for you for having an open mind. I think you may be pleasantly surprised compared to last time. I know of people in their late 70's and early 80's who have gone through this treatment and cleared hep C successfully. Keep us posted.

willie g · « **Reply #8 on:** July 12, 2014, 08:38:48 am »

well as of Wednesday they said everything was ago so I finally felt relieved.FIRDAY I GOT A CALL SOMEHOW THEY COULDNT FIND MY GENO TYPE WHICH WAS GENO 1, I SAID I HAVE A DOCUMENT THAT STATED IT AND I COULD FAX IT,THEY CALLED BACK AND SAID WE WANT YOU TO GO BACK AND GET NEW BLOOD WORK FROM SAME PLACE I WAS AT BEFORE.CVS/CARETAKER IS THE ONES THAT WERE SENDING DRUGS AND AS SOON AS THEY GOT THIER FORM BACK WHICH I HAVE A CPOY OF ASKS THIS AND THAT SO YU GET PUT ON RIGHT COMBO .IM 12 MILLION VL AND 7.1 IN IU ETC. WHICH I UNDERSTOOD BECAUSE I DEFINTELY WANT TO BE ON RIGHT DRUGS. IT WAS MY CAREGIVER THAT WAS QUESTIONING MY GENO TYPE YET THEY HAD ALL OTHER INFO. TO SAY THE LEAST I WAS CONFUSED AND NOT TO HAPPY.SO I WAS SENT TO STAT LAB WHERE RESULTS WILL BE BACK IN TWO DAYS AND THEN THEY CAN CHECK OFF GENO TYPE THEN FAX IT TO CVS WHO WILL THEN SEND RIGHT COMBO. MAN IM HURTING PHISICALLY AND NOW MENTALY. TO ME IT SEEMS LIKE INCOMPATANCE IS THE MAJOR PLAYER HERE ,BUT IN MY PARANOID MIND IM THINKING SOMETHING ELSE MUST BE GOING ON.NOW IM WONDERING IF ITS WORTH HANING AROUND ANYMORE AND MAY JUST GO BACK TO THE MONTAINS WHERE I RECIEVE NO RECEPTION BUT AT LEAST I HAVE PEACE EXCEPT FOR MY SIDE EFFECTS WHICH ARE GETTING WORSE. BOY WHAT A BUNNER BUT IT IS WHAT IT IS. PLEASE PRAY FOR ME IF YOU BELIEVE IN PRAYER. THX, TODAY ITS A SAD WILLIE G

willie g · « **Reply #9 on:** July 12, 2014, 08:56:27 am »

I HOPE FOLKS CAN GET TO MY NEW POST, IM SITTING HERE READY TO TAKE OFF AN I DONT EVEN KNOW WHICH DIRECTION TO GO. A SAD WILLIE G

Evil Santa · « **Reply #10 on:** July 12, 2014, 09:33:53 am »

Hang tough Willie g, Keep your eyes on the prize. Remember with the new drugs it is A CURE!! Not just a 50/50 chance it might work like before. I have resigned myself to do whatever it takes for the 12 weeks to kill this Virus.. We're all in this together and pulling for ya..
Later Jim

lporterrn · « **Reply #11 on:** July 12, 2014, 11:49:23 am »

I am sorry about the hassle Willie. Hope today is sweeter.

Mike · « **Reply #12 on:** July 12, 2014, 03:13:00 pm »

Hang in there Willie. Things will get straightened out and you'll get the right drugs. I know dealing with insurance can be trying; but a cure is at hand and you should focus on this.

Best wishes, Mike

yag1064 · « **Reply #13 on:** July 12, 2014, 10:23:01 pm »

Congratulation on your getting approved. I had a similar experience. I was denied treatment of Interferon/Riba/Solvaldi. The Solvaldi treatment along was $84,000 or $1000.00/pill. I was rejected for Solvaldi/Olysio too. I talked to Gilead and got on their Path program. They helped me with the insurance and I too could get the medicine free or with much help.
As it happened they approved the treatment plan. My co-pay was $55.00 per shipment. Then Gilead sent me a $20.00 card and I only had to pay $35.00 per shipment. Total cost of $105.00
So the drug companies are willing make it available at a reduced cost. It is the insurance companies that are tight with the money. But there is movement in the right direction for us. Just don't stop fighting.

Blessings,

yag1064

willie g · « **Reply #14 on:** July 13, 2014, 03:23:07 am »

It was a bad day but thks TO you folks I'm back on board! Thx

willie g · « **Reply #15 on:** July 13, 2014, 03:37:05 am »

The LUCINDA,back to my belt doughnuts!a much better day!Thks TO ALL.Just keep on truck in.

willie g · « **Reply #16 on:** July 13, 2014, 03:39:08 am »

I met THHAnks LUCINDA!

mellowe4 · « **Reply #17 on:** July 13, 2014, 08:52:27 am »

I started last week as well, I take the pills in the evening right after supper along with a allergy pill which my wife suggested. Often time allergy pills will alleviate some side effects.
I have also been taking ondansetron, a nausea medication to help with upset stomach. Ah, AND a month ago I started a sertreline lowdose to help with anxiety. The only side effect I have experienced is a little fatigue and I just work through that. Worked in the yard 10 hours yesterday, stayed out of the sun for the most part, sun screen, longsleeves, hat. it's all good.
This is a walk in the park
30 years diagnosed
stage 2 to 3
no drugs or alcohol 29 years
viral load fluctuates 4 to 9 mil

Have a great day and good luck!

lporterrn · « **Reply #18 on:** July 13, 2014, 11:15:12 am »

Hi everyone, especially Mellowe4 - your email prompted me to remind everyone to talk to their docs about potential drug and supplement interactions. Many drugs interact with the new hep C meds, but even if they interact, this can be managed by not taking the meds within a certain window of each other. Bottom line is to find out if and when. Mellowe4 - did your doc advise you as to the timing of taking sertraline? If not, do not stop taking it unless under MD advice - abrupt discontinuation can be harmful. It is just a timing issue - not dangerous - this kind of interaction means that you might not be getting the maximum dose of one or more meds.

I suggest everyone check out this site: http://www.hep-druginteractions.org/ If you find a potential interaction, talk to your medical provider.

mellowe4 · « **Reply #19 on:** July 13, 2014, 04:51:53 pm »

we went over all of the drugs AND supplements. I agree, research of the drugs is important. Self medication is dangerous. It's how I got hep c in the first place,,,lmao!

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Author Topic: Started Sovaldi/Olysio combo yesterday (Read 16453 times)