Battling for medicine refill
 

I am so bummed out now. We are working six days through December and I am out of my Vyvanse, my fatigue meds. My new doctor's nurse didn't start the preauthorization two weeks ago when I dropped it off. I've been out of meds for four days now. This is my one day off and we have the family here on Sunday for our Christmas dinner. I should be cleaning and doing laundry but I'm spending the day on the phone with Express Scripts trying to get my meds.

They've given me this med all year, and even with insurance it's $60 a month. I can't work without it. I even took the more expensive insurance this year. I'm so disappointed over the whole thing. :(

I have to use all of my time to play their game to get this approved. :(

Frustrating!!! and woe to the person who tells you "I understand..." No, they don't because they aren't us

I just called again for the umpteenth time and they hung up on me. My doctor's office said I need to handle it. :eek: I don't know what to do!

Nice Doc/Nurse...:mad:..Not.

There are sites online where you can review/rate your doctor's office. I suggest you make use of them while you are at home waiting.

is there any way you could ask to have the call elevated to a supervisor.
there's no excuse for someone to hang up on you.

could you call the company that makes the drug and see if they could give you a month free of charge?

i vaguely remember yrs a ago dealing with express scripts and it wasn't the best.

can you drink caffeine?

I called Express Scripts and Medco about a dozen times in three days. It still isn't fixed. My doctor's nurse thinks I'm a pest. I wonder if my local pharmacy is messing it up? I switched to them a few months ago. What a mess! You would not believe the things I was told by Express Scripts. Nobody there seems to know how to get anything done. The guy I spoke to last night faxed my doctor's office and said I am no longer covered by them. Then when I called today someone else there said they don't know why he would do that. :confused::eek:

I hope my insurance replaces Express Scripts for the new year. They are useless! :( :mad:

I asked for a supervisor twice and I was disconnected both times. :confused:

Wiz, you should have the ability to change specialty pharmacies on your own. I do, anyway. Currently I'm using, and recommend both, USBioservices and Walgreens SP. Walgreens SP has no connection with the stores.

I hope you get the problem solved soon. In the meantime, you might buy a small bottle of oil of oregano. If I don't take my two each morning, I'm sleepy by early afternoon. If it works for you you'll know right away. It's a cheap experiment.

I finally got my medicine this morning. The nurse called them one last time and they said it didn't need preauthorization, just RE-authorization. The woman on the phone asked questions, typed in the answers and then said ok it's good, approved. :eek: :eek: :eek:

The nurse gave the exact same answers she had given before but apparently nobody there was smart enough to put it into the system and get it to go through. :mad:

Now I could see how maybe one, or even two people had missed that detail, but between me, the nurses and the pharmacy, there had to be at least 20 phone calls and communications!

I told both the nurse and the pharmacy rep that I wish we could have a different mail in pharmacy but both of them said that it doesn't matter, they are all bad. :eek: And they deal with them on a daily basis!

Why such incompetence would be acceptable when dealing with patients medications is unbelievable and I can only conclude that it is deliberate so they won't have to pay for expensive medications.

And that is how they make money, if they can keep taking yours without giving you what you deserve in return.

I could never work for a company like this, I'd feel like I'd sold my soul to the devil.

You said it about right Wiz. I used to work for express scripts, it wasn't always so bad. But then they didn't have call times...at first... So the reps were able to take their time, go through everything, answer any and all questions, conference calls with Drs and pharmacists. Sure I'd still get the odd "WTF?" Calls where a previous rep was... Well to put it nicely... A complete imbecile... But it was like maybe one a week or less.

Then, even though I was in a position to tell them my thoughts on the matter, they decided they'd increase productivity by having call times and holding reps responsible for maintaining an average call time. Last I heard it was down to 5 minutes. It started out at fifteen minutes, then there was an instant increase in callbacks and screwed up notes from previous calls, I quit. I couldn't deal with it, I was livid when my supervisor urged me to 'get them off the phone' when someone called wanting to know what to do with the medication after their son committed suicide earlier that day, mostly because she was still in shock and honestly just needed someone to listen to her pain for a bit. It was a twenty minute call, my average for that day was 3.2 minutes... Basically my supervisor could kiss my... You know what.

Excuse me?! They're the ones who gave us the moniker of "customer care advocate" but don't advocate the patients, don't care about them, 15 minutes is what your average needs to be, but we're going to start hounding you to hang up if it surpasses 5. Like it's not stressful enough dealing with terminally ill patients, children who can only function if they have their meds, the little old ladies with their laundry list of medication who now doesn't know what her nitro pills look like because the pharmacy changed their appearance. But let's get threatened with termination, because an eighty year old feels the need to describe every pill she is taking so she can figure out which one is the new one when to her all of them look the same.

And yes, most all mail-order pharmacies are the same way, likely to all be outsourced to foreign countries soon too, won't that be fun.. NOT, well unless you're well versed in foreign languages I guess. About the only thing you can do is skip long questions or background, keep it simple 'why wasn't x filled,' always start with why, 'what needs to be done to fix this', 'who needs to contact you', 'how long will this take.' If at any point you don't like the answers ask for supervisor. If you get disconnected call right back and say nothing more than "supervisor"... Oh they'll try to get you to confirm your information, verify your acct and any number of things to avoid calling their supervisor over. Don't give them the information, "Supervisor... I hear you, I understand what you are saying, now hear me and understand, I will only speak with a supervisor." Yeah, they'll hate you for it, but if they're good little people and get their supervisor it looks good for their call time.

that is pathetic.
who on earth is in charge of all this?

is there some agency it can be reported to?

I HATE Express Scripts. They are complete imbeciles and have screwed up many of my prescriptions. Every once in awhile you will get someone who seems to know what they are doing. But sometimes I'm shocked at the sheer level of stupidity. Here is my advice:

1. Every time you call them take notes on the conversation. What do they think went wrong? What are they promising? What did they say they could do to fix the problem? What are they claiming your doctor's office said?

When you have to call again you have the exact record of what was said. If they try to deny a screw up you can give them all of the details. I've kept notes and called them on their BS and got them to give me multiple week long supplies of free meds (when they send generic instead of name brand over and over again).

Sometimes they also try to blame it on your doctor's office. But if you have names of people you spoke to at Express Scripts and what those people said you can avoid the blame game.

2. Ask for the name of the person you are speaking with and write that down in the notes you take during each call. You may need this name to follow up with that person.

3. Be persistent. Just keep saying over and over again: "I need this medication right now."


Great advice Starznight about demanding a supervisor when they get weird about things!

"Express Scripts" ..... Even it's name is false advertising.

I was once again denied for my refill this month. I'm tired of fighting for this. I took my last pill yesterday. Today was my day off but I work tomorrow. Maybe it's time to throw in the towel and quit working?

I slept until 11:30 am today and so far I have done two loads of laundry, fed the kitties, took my shower and loaded the dishwasher. I'm ready for a nap. Maybe this is a sign that I've pushed myself to hard and it is time to go on STD at work until LTD kicks in then apply for SSDI?

If I go to work tomorrow (assuming I can get up and be ready to get there on time) I'll be useless.

Even with the Vyvanse it is hard for me to get there on time. I'm so slow in the morning, no matter how much sleep I've had.

My feet are numb, my hands are weak and I lose my train of thought when speaking to customers and co-workers. I helped count cash last night and it took me forever.

Time for O.T.D...Out The Door.. :D

Wiz, sounds like it is that time. It was amazing how good I felt after letting my body have that time away form the pressures and physical duties of work.

Wiz - sorry you are having a tough time getting your refills and then working. Hope you can work something out. I decided to take early retirement when I just felt like I was not doing a good job anymore and I was getting sick on a frequent basis. I do miss teaching and the interaction with colleagues and students at times, but then I remember how exhausted I was all of the time.

I had to call off work today, they will be very short staffed. Tomorrow I see both of my doctors, the neuro, and the GP. I'm going to get my blood tests and see how my B12 and cholesterol are doing, then see the neuro and see if they can call in for the appeal for me to get the Vyvanse. DH does not want me to retire yet, he thinks I'll be miserable and go stir-crazy (he could be right) he even offered to call Express Scripts for me today to argue with them. :rolleyes:

I'm going over my finances just in case. I've invested heavily in my retirement funds that past 12 years, but not enough to live a decent lifestyle until I'm in my 90s (the average age for many of in my family to die).

I really want to work at least five more years but I don't know if I can make it that long. I'll be 62 five years from April.

I have two thoughts about this... as I have been following this thread...and have some experience with drugs and insurance.

1) If you are still using that statin...I'd consider stopping it.
Statins are known now to affect memory and brain functions, which is something a MSer doesn't need. Statins will interfere with remyelination of axons in the brain. In some cases the downsides of them are far worse than believing the cholesterol myth.

2) Perhaps your insurance will pay for immediate release amphetamine of some sort ( a less expensive drug like generic adderal?). They are just declining brand name?
But then some insurances require prior authorization for ADHD drugs for adults. Usually those documents last 6mos to a year when submitted by the doctor. Adults may develop expensive and threatening cardiovascular events on this drug... so insurances don't want to pay for it.

MrsD

I stopped the statins about four months ago and I'm trying to control my cholesterol with my diet. I was getting bad leg spasms. They're checking my cholesterol to see if it has helped any.

My doctor's nurse said she doesn't think I should go for the cheaper ones like Adderall XR that I took before because they don't work as well. I hope I can get the Vyvanse approved. Maybe I'll find out more at the doctor's office tomorrow.

The meds do affect my blood pressure at times so I'm on the lowest dose.

Diet does not really help much with lowering cholesterol. The liver senses lower dietary intake and ramps up the synthesis.

There are some new videos on the truth about cholesterol, now on YouTube by doctors and researchers.

One is Stephanie Seneff PhD who is researching the benefits of cholesterol. This is something no one before has done... all the years that statins have been out....no one is researching what cholesterol actually does!

also
https://www.youtube.com/watch?v=19uxXqWF8h4

I do hope you get this resolved somehow... the insurance problems were so terrible for me I had to retire. I couldn't do it anymore!

So sorry for all of this, Wiz...the stress of it all doesn't help:hug:

As for quitting work, i would definitely have a plan before you do. Make a list of things you'd like to do the first year. Many retirees do go crazy after years of having a routine and then suddenly are at loose ends.

Even though your symptoms may prevent some activities, you could make lists of things to do like volunteering, museum-walking, going to downtown Chicago for the day during the summer and watching the kids play in Millennium Park (there are occasionally rehearsals at Pritzker Pavillion during the day that are wonderful to sit and listen to). My DH retired and is so busy he can't figure out how he got anything accomplished around the house while he was working:)

As for your problems with your pharmacy, maybe you should have your DH get on the phone and get nasty. Ask for the supervisor and get assertive about this problem. Shame on them:mad:

Also I was thinking... If this is a chain pharmacy?

If so you could enlist them at the home office to do this, as stores are just too busy for complex things. Most have a third party department, which just fixes the worst problems to spare the outlet store. They may be able to bypass some of the bozos you are getting on the phone, and get direct help from Express Scripts.

You could also go to the media, about insurance abuse! Get some publicity rolling about chronic illness and how insurances are not stepping up to help the patients out at all, but to sabotage their quality of life, etc.

Today I see my doctor and I'll see if he can get his nurse to call in the appeal today. It has to be done by the doctor's office. When I was seeing Dr. Wynn this was never a problem, he had lots of office staff. My new doctor has only one or two nurses and a receptionist. But then again, maybe the insurance really just won't cover it anymore. I guess I'll find out today.

That isn't necessarily true and it really is out of the RNs scope to independently tell you this unless that is what the physician asked her to pas along. Although you might be an unusual medication specific type metabolizer in most cases the difference is simply the duration of action. There are probably 4 or 5 different Adderall type stimulants you could trial.

Basically there are two types: 1. Ritalin and 2. Adderall. For most people either of the two types works. In some people if for whatever reason the Ritalin type doesn't work it is usually not worth trying another Ritalin variation we would immediately switch the child to an Adderall type for trial.

http://www.webmd.com/add-adhd/guide/...dication-chart

I might have missed it in this thread but exactly how much would it cost to pay out of pocket for the Vyvanse? Although no one wants to have to pay it would certainly beat quitting work if you aren't financially ready to retire.

i know the drs office usually orchestrates an appeal.
i'm on medicare and i've had that done a couple of time. they order the refill and when it's refused they send in the appeal.

however, i've also gotten letters from medicare; the drug program, and they say you can send in a form to try and get the drug. i can't remember the terminology they used.

of course this all won't get rid of the stress of it all. so frustrating and time consuming. these "battles" are never good for us.

Well Vyvanse is out of the question now, the insurance company will no longer cover it. I'm going to try going without it and see if I get any better after being off a few weeks. They suggested I try ritalin, or call the insurance company and see if they'll cover that. My blood pressure was high today, 148/98 so I think it's good I take a break. It could be the stress of the situation that made it go up though, or from being taken abruptly off of the Vyvanse.

I told my manager at work what happened. I don't care if they know but if they see a difference in my work they'll know why. They won't dare fire a 56 year old woman with MS so at least I know I'm safe in that regard. :rolleyes:

I know I'll never get a promotion though, at least I feel like it's impossible. Who wants to hire the sick older woman when others can also do a good job? But I know I can keep my job (at least I'm 99% sure about that. :eek:)

Hey Wiz,
It would make more sense to try another Adderall variety first since you have had a positive response and no adverse reaction. Although Ritalin is likely to work also to change from an amphetamine stimulant which was well tolerated and effective to methylphenidate without an adequate trial of the amphetamines could be counter productive and cost you more time to find an appropriate substitution in the long run.

If you have contacts in the mental health arena I'd run it by them as our incredibly brilliant neurologists, who I mean absolutely no disrespect to, aren't necessarily the most well versed in psych meds. :)

Best of luck to you. Jules

Vyvanse is just a fancy amphetamine. Probably heavily detailed to doctors to make some $$. Adderall should work as well minus the longevity of the actions...extended release products tend to be different in bioavailability from company to company. Rxlist would show the absorption graphs and extended time frame, for each.

However a 98 diastolic (lower number) is not good at all. This reflects more on systemic effects, than emotions.
Typically for most people the systolic will go up with temporary stress(adrenalin), but the diastolic remains elevated from chronic stress (cortisol) or drug use.

High diastolic pressure reduces blood to the kidneys. If you find that you urinate more lying down...that is a sign your kidneys shut down from the high pressure while you were upright and working/moving around. Often when people have high blood pressure, they will start making urine as soon as they recline...sometimes within an hour or so.

Ritalin (methylphenidate) will also increase pressures, but not to the extent that amphetamines do, depending on dose of course.

When using amphetamines, it is best to not have any caffeine or nasal decongestants on top of them...that would be additive to raising blood pressure.

This whole problem could be viewed as a "wake up call"..as unwanted as it is at this time. I can really commiserate with you though...as insurance companies torture patients, and caregivers alike constantly.

It can also happen from things like poor circulation, lower extremity edema.

I have a BP cuff at home and it was just 136/87, so not nearly as bad. I know the Vyvanse raised it but it would go down as the day went on and get down to about 115/75 by bedtime. I don't know how bad it is having it be high for 8-9 hours a day, but I'm sure it isn't good.

They had me double my anti-depressant dose. I'm stopping my Copaxone after I finish my final month's supply and switching to fingolimod (Gilenya) as well.

I thought of paying full retail for Vyvanse but I think now that the worst part of being without it is over, I'm going to see if I can work without it. I have a lot of brain fog but I know my job very well so I might be able to manage eventually.

The good thing is, now they know about it, the MS cat is fully out of the bag. So while I might not do as well with my sales, at least they know so if it ever comes to STD they'll understand.

I need to sit down with DH and have a long financial talk so we know where we stand just in case.

wiz,
are you paying for long term disability?

i had worked at my job for 18 yrs when i got my dx. all that time i had LTD.
however, i thought if i went PT i could extend my work life. turned out it didn't work and i needed to resign.

i lost my chance at disability and it made things financially a lot harder.
it was a good 18 mos til i got approved for ssdi.

Judi,

They take LTD out of my pay check, I've worked there five years. I don't know what I qualify for that but I know I have it if I need it. I would go that route and on to disability if necessary. There is a track record now so if I need the STD, then LTD it should work out but I don't know how it all works. But I can work through that if necessary if it comes to that.

I just took my BP again and it was 108/65. And I haven't taken my bedtime BP meds. It might get pretty low at night so the average over a 24 hour period might even out and be good to protect my cardiovascular system.

I get an EKG (ECG?) test before the Gilenya to make sure my heart is ok, and it has always been good in the past.

If I didn't work I could probably get off the BP meds altogether.

Hi Wiz,

Sorry to hear about all of your insurance problems. Did you check to see if Vyvanse has a patient assistance program?

I didn't look closely but found this.

http://www.shire.com/shireplc/en/patient-support

Good luck!

Natalie :hug:

Ah, sweetie, the stress of all that you're going through sure can't help your BP. And now that the workplace knows, you won't have the stress of hiding that issue, so that will indeed help.

Your pile of lemons got a bit larger, didn't it? Lots of lemonade to be made:hug:

Wiz, have you tried dealing directly with Vyvanse's manufacturer? They have a patient support system: http://www.shire.com/shireplc/en/patient-support.

I don't know if they could help if it is prescribed off-label, and I probably wouldn't meet their income level for assistance anyway. I'm going to try to go without it and see how it goes. My symptoms are flaring up from the stress though. I think it's probably best if I can live without it since it does affect my blood pressure. One of my managers at work asked me if I could get a diagnosis for ADD. Actually, I probably had it as a child because my teachers always told my mom that I never paid attention in class, and our oldest son had ADHD as a child and still has ADD as an adult.

I'd check into the LTD policy because I haven't ever been able to get it through an employer, including the federal govt thanks to my pre-existing MS dx. :(

I would guess that since they are taking money out you are entitled to it or at the very least a refund of the money you contributed but it wouldn't hurt to be clear before you count on it.

I was thinking along that line Jules since my MS existed before I started working there. But even if I got STD it would help until I could get disability. Or they could fire me and I could get six months unemployment.