prescription coverage and Rilutek

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rose

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I've run into a problem with coverage for my Rilutek. I guess it was a one shot deal that Expresscripts allowed a co-pay of 25$.

I delayed taking the Rilutek at first, just dragged my feet over it, and then I was only taking one tablet a day instead of two because of trouble tolerating it in the beginning, so the original script filled has lasted me two months, even though I should have been on it for almost three by now. Everyone I saw down at Hopkins emphasized that I needed to go ahead with the twice daily dose now, and guess what! Expresscripts says I've exceeded my allowance for that particular medication. I've "registered" for lack of a better word, with Curascript (mail order meds fulfiller) ,and was told that they'd get back with me in a couple of days as to what my cost would be.

So, of course meanwhile, I've run out of it, did not try to refill early as I didn't anticipate a problem.

Has anyone else experienced this, and if so, was the cost of using a different prescription provider a difference in price? Its just worrying me that I've heard how expensive this drug can be for the consumer, and now I'm wondering why my prescription plan has this policy (tried to find out, got no where) and if I should be braced for a huge cost increase or not.... thanks, :)
 

BethU

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Hi, Rose ...so sorry you are having to deal with this issue. It is a biggie for a lot of people.

In California, Rilutek retails at about $1,000 a month, give or take. I have a peculiar HMO (Blue Shield) that takes over my Medicare insurance, which means that if Medicare covers it, BS will cover it too. The HMO does pay for things that Medicare doesn't cover so its not a complete rip-off. But right now, I am in the donut hole of Medicare's prescription coverage, so BS is not paying for my prescriptions, either.

Here's the deal. When BS covered it (before I hit the donut hole), the insurance paid $500, and I was stuck with the other $500. While I'm in the donut hole, I'm stuck with the whole $1,000. I checked out the price from a reputable Canadian pharmacy, and it is about $500 per month.

I discontinued Rilutek after a month, as I felt it was making my symptoms worse ... or at least, more annoying. (heavier twitching, etc.) But if I were taking it and had to pay retail, I'd go straight to Canada.

The reason it's so high (aside from greed) is that it is an "orphan drug," that is used only for one rare disease ...

Hopeyou find a good solution.
BethU
 

rose

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Thank you Beth, I remembered that you weren't all that happy with iRilutek anyway. Last week down in Baltimore, I got a lot of urging to be taking it, and also the 2X instead of just the morning dose. I don't mind taking it ~ once I got accustomed to it, I didn't notice side effects one way or the other. However, if this is going to cost a sizable chunk each month, before my Social Security kicks in, I'll have to give it more thought before continuing it.

I have no clue about how Medicare is going to work, and absolutely know that I won't be able to COBRA my medical for long, as its about $400 a month just for that! Highway robbery as my dad would have said! ... It is just beyond me why an insurance plan would only cover having it filled once when it obviously is a medication that would be indicated for long term use. Go figure. Maybe the Curascript plan will be in line with pricing, but the representative on the phone was very vague and wouldn't even give me an estimate.

thanks for responding xo :smile:
 

lydia

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Yikes!

Hello Rose,

Just trying to get a handle on what you are saying....are you saying your insurance allowed you one fill-up of the medicine, at a $25 copay....and that is it?! No more?! Is Rilutek used for other problems, where a single 30 day supply should address the problem? I am flabbergasted by what you are saying. How do they get away with it? Does it say anything about this single fill-up for this and/or any other drugs in your policy? What is the fine print, so to speak? I have never heard anything so absurd.

Suspecting I might be in trouble health-wise, I tried to choose wisely when I changed jobs recently, but have already been surprised by my new insurance coverage's apparently bizarre policies...

How do people swing it? How can you pay $500 a month for this, I make a decent income, supposedly have "good" coverage, and dont have serious debt, but that would HURT!

Sorry to sound so ticked (and naive), but....I am!

Lydia
 

rose

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Lydia...

I really don't know how much it is going to cost. All I know is when I tried to get it refilled, my insurance denied it, and the pharmacist gave me the print out he received where it stated: Number refills authorization invalid. I called the 800 # on the slip of paper and was told that it was a one time deal that Express Scripts would cover it and me just have the 25$ co-pay. The company I was referred to to obtain the Rilutek from now, is a mail order clearing house for meds and they are to call me back with how much it will cost after they verify my prescription with my neurologist. I actually had another new prescription for the Rilutek, that she wrote out for me when I was there earlier this week (can't believe it was just this week! its been a looong week already LOL) but the pharmacist said the new script would make no difference. It wasn't that the old script was expired, but that they (Express Scripts) wouldn't cover another round of the medication.

Honestly, I don't plan to continue if its going to be $100 or more a month. This may be an arbitrary number, but anything more than that seems pretty excessive, when all the research says is that the Rilutek can increase life by 3 months or so. - Then of course later, I may wish I had the the months, who knows!
 

rose

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I just got a call from Cureascript, and was told that my co-pay will not change. (yipee!) So, I guess for as long as I'm willing to COBRA my health insurance, the Rilutek will be affordable at $25 a month. I'm clueless as to what will be covered with Medicare though...
 

freddiesnetty

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Oh Rose,
I just got rid of a full bottle of Rilutek as it did not do much of anything for Freddie and he just doesn't want to take much of anything anymore....Hardly any meds.........He doesn't want to fund the pharmacutical sp? companies as he puts it.......Can't hardly blame him...I wish I would of read this post earlier..........Sorry....... Hope it all works out for you...
netty
 

BethU

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That's great, Rose ... it's so nice when something works out like it should.
 

lydia

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Rose, I am glad you got that good news. I had mentioned that I recently changed insurance coverage. Well my daughter is diabetic and when we went to the same old pharmacy as always to fill latest prescriptions they told us our insurance didn't cover diabetic supplies (insulin and all the other stuff). We were stunned, how could I have overlooked that obvious coverage gap when choosing the new coverage? Was I some kind of nitwit? My daughter is on the pump and the monthly bill is over $1000 and I was distraught...how would we afford it? And angry...how dare they? Aren't there laws to cover diabetics, etc...? To make a long story short, after many phone calls we finally learned of course we had coverage, but we had to go through a special provider for anything related to the diabetes...and even better, no co-pays! And the joy we felt, we were ecstatic! We even went out to eat to celebrate this happy end to an absurd situation. So what is my point...I don't know I lost it....something about even though these scenarios are stupid (really, one fill up on Rilutek?) and cause us ridiculous anxiety and eat up our energy....when they finally resolve in our favor, it just feels so darn good! I know I know....we shouldn't have to be subjected to this kind of abuse just to experience the happiness when the abuse ends. Anyways, I am happy this worked out.

Lydia
 

rose

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Netty... thank you for the thought :smile: ....I'm somewhat conflicted about the Rilutek and was reluctant to start taking it anyway. Even my neurologist didn't talk it up, she kind of shrugged her shoulders and made the spiel about it only increasing life span by three months on average. However, it looked like the studies and trials being conducted now pretty much required that the participant be on the Rilutek as well, and, as a mom, I thought what if down the road just a few months would make a difference, what if it meant holding a grand baby for the first time, or whatever.

When I first started taking it, it made me feel weaker and I've gotten past that, but have not noticed it helping. On the other hand I was only taking it once a day, and am supposed to start with twice. Since I ran out of it this week, I've not noticed any difference either....

Beth, yes, I agree. It was a happy surprise really.
 

brendapals

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Rose,

It is amazing that I am even reading this today! I also got a slip from the pharmacy 2 days ago saying I had to go with ExpressScripts to get my Rilutek. I had my hubby call them today, and they are going to verify my insurance, verify the script, etc., and then call back with a price and a delivery date.

What's weird for me, I was only paying $20 a month for it, until my hubby retired and his insurance changed. My copay was the same for the first 2 months, but now they say I have to use mail order. I worked retail pharmacy for 22 yrs before becoming a nurse. I remember how much my pharmacists disliked mail order pharmacies. I hope that since Rilutek is not available in generic, they won't "mess up" and send the wrong pills!

We are incredibly alike in the Rilutek pattern- I put off taking it for a month after my diagnosed, then I thought, what the hell, if I don't have any side effects, and it is not a million dollars, I'll take it. I've read about people who have pretty bad stomach problems with it and other things. I haven't really had anything bad happen in the last 3 months on it, also don't know if it's doing its' job? I'm supposed to take it twice a day, and most days I'm so tired at bedime, I forget to take the second one.

Time will tell though, I just hope my hubby enjoys talking to all these reps on the phone- I used to do all of that, but I'm teaching him how to now! Guess that's why I'm on the forum right now, spending my day off doing laundry and dishes was just too much like work!

Happy Hump Day,
later gater,
brenda
 

tmasters

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Just started Rilutek

I've put this off for a while as I'm concerned about side effects, etc. But I figure I'll try it and see what happens.

I just picked up my first 60 count bottle of Rilutek last night at Walgreens. The label says "cost: $1028, copay $20, insurance saved you $1008". Wow!

So far taken 2 pills. No stomach aches yet. No side effects. The big test is the liver enzymes, better lay off the hard stuff this month until after the blood test. :smile:

I'll consider mail order. I've done it before with Crestor and it was actually more convenient and less cost. For Rilutek, I get one month supply at the local pharmacy for $20 or else 3 months mail order for $31. So it's about half cost mail order. But I want to wait to make sure I'm gonna stay on it before I switch over.

-Tom
 

rose

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Brenda, You're right! - We've got a very similar pattern going on here. I only managed to take it the 2x one day before I ran out LOL. However, the mail order place called me today - well actually the first time yesterday when I was in the hospital, saying they had the script verification from my doc and needed to make sure delivery was correct. When she called back today she said I'd have it tomorrow! Its coming via FedEx or UPS. So, maybe this will be fine. I certainly can't complain about delivery turn around. :)
 

laurel

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Rilutek question

I've run into a problem with coverage for my Rilutek. I guess it was a one shot deal that Expresscripts allowed a co-pay of 25$.

I delayed taking the Rilutek at first, just dragged my feet over it, and then I was only taking one tablet a day instead of two because of trouble tolerating it in the beginning, so the original script filled has lasted me two months, even though I should have been on it for almost three by now. Everyone I saw down at Hopkins emphasized that I needed to go ahead with the twice daily dose now, and guess what! Expresscripts says I've exceeded my allowance for that particular medication. I've "registered" for lack of a better word, with Curascript (mail order meds fulfiller) ,and was told that they'd get back with me in a couple of days as to what my cost would be.

So, of course meanwhile, I've run out of it, did not try to refill early as I didn't anticipate a problem.

Has anyone else experienced this, and if so, was the cost of using a different prescription provider a difference in price? Its just worrying me that I've heard how expensive this drug can be for the consumer, and now I'm wondering why my prescription plan has this policy (tried to find out, got no where) and if I should be braced for a huge cost increase or not.... thanks, :)
Hi Rose,
I'm sorry you are having a rough time. Just a question, you mentioned having aspiration pneumonia several times. Is there any connection to having pneumonia and starting the Rilutek? When my husband took Imuran for his CIDP, he promptly got sepsis and had pneumonia. I see that sepsis can occur with Rilutek.
Laurel
 

rose

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Laurel, I did not know that sepsis was a possible side effect of the Rilutek! - Guess I ought to read the fine print! In fact, I keep forgetting to go have the liver function panels done - there I was right at the hospital and forgot.... To answer your question, the first time I had the aspiration pneumonia, I was not on Rilutek yet, and this second time I'd actually just ran out of it (due to the problem with insurance and getting it refilled) It is supposed to arrive today. As there has been a gap of about a week since I had any, I think I'm going to wait a little longer to resume it as the antibiotic I'm on seems to have quite a list of possible bad effects itself. The name of it is Omnicef.... take care, and I hope your hubby is doing ok :)
 
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