Help, I'm desperate for Provigil!
 

First a little background. I have not seen my neurologist since 2005, when I had a follow-up MRI a year after going off Avonex and there were no changes to the MRI. My MS has been relatively stable, although I deal with fatigue to a varying degree every day of my life.

I’ve never had a problem getting medication refills in the past – all I do is call up the doctor’s prescription refill line and while it takes them a while – usually two weeks – I get my prescription refilled. Even though my prescription for Provigil is 100 mg once a day, I cut them in half and use it only when I absolutely need it to make it through the day.

So I did my usual and called in my prescription and after almost two weeks, it was called into my pharmacy. When I went to pick it up last Thursday they said they couldn’t fill it until the doctor submitted a prior authorization form because of my absurd Anthem insurance, which I hate. So I thought, OK, so I’ll have to wait another week or so, but at least I’ll have it in time for my upcoming business trip at the end of October.

When I called the pharmacy today the woman was so apologetic and told me what happened. After her second call to the doctor’s office to obtain this prior authorization, she was finally able to talk to a PA.

The first comment from this PA was that I was not taking the medicine as prescribed and therefore she wouldn’t fill out this form. LOL no kidding, at $50 co-pay for a one month’s supply I conserve as much as possible! Let me get this straight, I’m being punished for not taking enough Provigil? WTH?

Next, she pulled my records and changed her excuse to “she hasn’t seen the doctor since 2005 so we won’t fill out this form until she sees the doctor”. Well, that’s all fine and dandy but there’s a three month wait to get into see him, so WTF do I do in the meantime? I left a message on this PA’s answering machine, practically begging for even a one month’s supply until I can get in to see the doctor but I frankly don’t see her helping me.

So, what to do? One thought I had was to go to the emergency room, which I’ve never done and hate to do for something so insane as needing a prescription refill. Heck, I doubt they’d even see me.

I would call my GP but I know for a fact he won’t prescribe Provigil – I’ve tried in the past. He doesn’t like to step on the specialists toes so he won’t prescribe any MS related med.

Another thought I had was to try one of those nifty online pharmacies. My concern, besides having to pay triple the cost for a month’s supply is if these places are legit and the meds safe.

Any suggestions or personal experiences anyone cares to share? Provigil is the only reason I can continue to work full-time – without it, I’m screwed. :(

UGH.
Stupid doctors and pharmacys and paperwork.

I don't have any advice other than explaining to your doc why you can't take them on the schedule he prescribed. ($$$$). Maybe he can even give you some free samples to help you.

MOOSE SIZE THREAD BUMP!

Call your neuro's office and get a fax number. Then write the doc a letter and fax it. Once you put it in writing and they see it in black and white, I am betting that your neuro has no idea what's going on.

I ran into a similar situation with my PCP a while back and found out that he was totally unaware of what was going on. The PA and the PA's nurse were not telling him anything. From that point on, I insisted on putting everything in writing.

The letters go into my chart and if I have any problems, there is a written record of the situation.

Good luck and I hope you get your medication refill.

Thanks so much for the suggestion of writing a letter Cheryl - I was way too tired and PO'd yesterday to be thinking clear. LOL In this economy I simply cannot afford to lose my job and I really felt like they were messing with my paycheck yesterday.

I've had issues with my docs office staff in the past. When I called the idiot who talked to my pharmacy I got her voice mail of course - her recording said she was the other doc's assistant so I'm betting my doctor and his assistant were off yesterday and I got stuck with his partner's assistant.

I'll be calling them today for that fax number and crossing my fingers that my doc is in today and my letter doesn't get "misplaced". ;)

I take Provigil the same way you do. I break the 100mg in half and take it a few times a week. It works best for me that way. My doctor doesn't always really like the way I do things, but he knows that I know generally what's best for me and I do best on small doses of meds.

I hope you can get a refill soon!

Sigh. I had my very professional letter all typed up, just waiting for me to fill in a blank about when I had scheduled my appointment. Well...no need to send this letter.

Not only will the neuro's office not call in even one month of Provigil for me, they will not even schedule an appointment for me. I have to be "re-referred" as a new patient before I can schedule an appointment. :Bang-Head:

My insurance plan administrator told me that she was surprised they had kept refilling my scripts without seeing me. Apparently there's a law that they must see a patient annually in order to keep prescribing meds? LOL I've been getting them for three years now! WTF! :hissyfit:

Whew. Deep breaths. Gee, didn't the neuro tell me that stress was bad for MS?

Write the letter anyway. Add a paragraph explaining the past three years of getting the meds. Let them KNOW that you have been getting the meds and it would be appreciated if they could see you for a "visit" with a follow up as a "new patient" in order to get the rx filled NOW. Make it easy for everyone as you have MS, not them. You are the sick one...not them.

I agree with Cheryl.....write the letter anyway. I'd fax a copy and also mail a copy. And request that it become a part of your file.

In this day of law suits for every little thing and doctors feeling like they have to CYA all the time I sort of understand why they are being like this. Still though, it doesn't help you!!

Maybe if they understand how important it is to you and that you simply cannot afford to be without it or start over as a new patient they will lighten up a bit.

BTW.....doctors negotiate rates with patients. If you cannot afford something let them know. I spoke with the office manager at my Neuro's office about this as I will be without insurance at the end of December. I asked if they would charge me what they accept from my insurance as payment should I need to be seen. She agreed!! I only go twice a year - and I'm seriously thinking of changing doctors anyway - but if I need to be seen it's good to know that it won't break the bank!

Certified mail with return receipt?

Even better!! :D

Yep, I'll be revising that letter, trust me.

Round one is done. I was able to get a referral faxed from my GP and I have an appointment with the neuro at the end of November. BTW, I just had to ask, if I'm a new patient, does that mean you no longer have any of my records. ;) She said, oh no, we have all your records right here. My health plan administrator said the main reason they do this is so they can charge the insurance company more money. It appears they get more money when you're coded as a new patient than as an established one. Scam artists!

Off to do some internet research on our laws.

Not sure if it will work, but when things are really bad for me (twice in the last two years) I just go to my neuros office at the very end of the day tell the PA that it's an emergency and I sit there. The Doc has seen me both times to the consternation of the PA I might add. Nothing makes me happier than seeing that ***** mad. :D

Let me tell you, if I thought I could pull it off I WOULD camp out at his office. Every one of his staff are incompetent *******, no kidding. It would get me absolutely nowhere.

Heck, I even had a legitimate appointment one time, sat in his waiting room for over a half hour before this bimbo - the one that had set up my appointment in the first place - calls me up to the desk and says "Hon, I think you're confused, you are not on the appointment schedule today."

Well, that really P'd me off. I happened to have the appointment card IN HER HANDWRITING with me, so I pulled it out and gave it to her. She started looking worried. Next, she disappears from the desk and I hear my neuro raising his voice but can't make out what he's saying. She comes back a couple of minutes later and says she's sorry but he's so far behind he can't see me today. I was really furious as I had to leave work early for this BS and then he doesn't even have the <bleep> to see me since I'm already there!

If there was another good neuro nearby, I'd leave in a heartbeat. I've even discussed this crap with my GP. He sympathizes with me and it really irritates him how that neuro's office is ran, but he said while he could refer me to another neuro, they're all pretty much ran the same way. Nice.

That is EXACTLY why I keep my appointment cards ON me. I showed up once to be told I was NOT scheduled for that day. I drive 1 1/2 hours to get there, i dont just jump in the car on a whim. I said, yes, Im sorry, but MY appointment IS for today, and I would like to be seen. She called in the back and yammered on and on about how "THIS LADY" out front is demanding to be seen, and doesnt have an appointment. She wants to set me up with a new appointment, but since "THIS LADY" is being so rude, could someone come out and talk to her?! when the office manager came out, I handed her my appointment card, showed her on MY calendar, and that I have 3 appointment in the same building TODAY, as I book them all on the same days. She went on to tell me that my appointment had been moved, and I should have been notified. I said since I wasnt notified, and am now out of meds, I WILL be staying and having dinner in the waiting room if need be. My other appointments are done, and this is the only one left.

It was a while but I WAS seen. I was ready to order a pizza to be delivered if need be. I wasnt going anywhere, even if it was just to tick off the snotty receptionist.

I'm going to voice a "NO, NO, NO!!!!" on the certified mail route. Nuh uh. You don't want to do that. What purpose would it serve? Showing that they GOT the letter? It might make them think you have some ulterior motive for the need of a receipt.

A better suggestion, might I say, is using a certificate of mailing.

http://www.usps.com/send/waystosendm...ingservice.htm

First of all, when you use THAT only YOU have evidence that you mailed it--the doctor doesn't.

Second of all, you can staple the certificate to a copy you keep for yourself (your letter) and then if they say that they never got it, you pull out the certificate and the letter you sent.

Using a certificate of mailing raises a presumption under the law that the item was mailed. Basically the presumption is that once you've put the item in the mail, the one receiving it has received it already. That's a fiction, of course, but it means that we trust the USPS to get the item to another person without fail.

And try proving that you didn't get something in the mail. Dare ya to show you didn't get a piece of mail. I'd rather prove that I mailed something.

I am re-reading all of this and it just turns my stomach. Why do we have to go through all of this to see doctors. :mad:

We are the sick ones, we PAY to see them, not the other way around. They collect our fees and pay staff to treat US as if we are second class citizens.

We devise all these ways to get around the system to get into the "inner sanctum" for that oh so precious 5 minutes of their time to be billed what - $150? And then what? Did we get what we went in there for? Did we walk out of there satisfied? Did the doctor write out that rx? No, someone else wrote it out, it was pre-stamped with his signature on it, someone else handed us a handful of pamphlets to read or paperwork to sign based on what he checked on some sheet of paper/or form he was paying more attention to than the patient.:(

So, when is enough enough?

I say write that letter to your neuro. Deliver it in whatever manner you deem necessary and let the staff know just exactly how you've been treated. I also suggest a copy to the local AMA association. That will get his attention. Lodge a complaint...it's gotten to the point that we as patients have no rights anymore. We are treated like criminals because we are sick and need to be seen by doctors and the staff protect their doctors like they are gods. They are not. The staff are too protective and need to take a step back and listen to the patients.

I made a comment earlier about faxing notes to my neuro. It's a great way to communicate and it came about because of a receptionist she no longer has. It's become a great way to get information to her. They are busy and they love that I fax them notes. It saves them time writing messages and trying to translate things. It's a win-win situation for both of us.

Good luck with seeing your doc. This is just not right.

Whatever happened to doctor's offices calling and confirming the appointment the day (or 2 days) before? If I haven't gotten a call from the office by about 3 PM the day before my appointment I call them and confirm it myself! I don't have that far to drive but believe me, if I had to drive 1 1/2 hours just to see the doctor, there'd be some confirming happening!!

LOL you know my blood is STILL boiling over this B.S. As a matter of fact I was in the shower stewing about it just now. I believe what I'll do is hand the letter to the doctor when he comes in to see me and I *dare* him to ask me if I'm a new patient. My hubby attends all neuro appointments with me so I'm sure the neuro will hear about it from the both of us. And this isn't the first time we've had to complain to him about his office staff. I think the only requirement to work there is to be an uncaring B. :(

The problem with these specialists, quite frankly, is they know they have us by the you know what. :mad: I mean, who knows, he may "fire" me at my appointment and then what - no meds and no doc. It really sucks. I can say this much, if the appointment doesn't go well, I will lodge a formal complaint with the ADA since apparently it is against the law to be prescribing meds to a patient for over three years without seeing them, per my health plan administrator. :D Looks like they're the ones with the problem, not me as I had absolutely no idea and I have other friends with MS who never have to see their docs for refills. I would like to think if there was an issue, they know how to pick up the phone and call me.

As far as getting reminder phone calls, this doctor's office never calls but I always call to confirm my appointment since that incident of the disappearing appointment. LOL

Cannot wait to hear your update on this! MY blood is Boiling just reading about it!!!

All I can say is that I feel so blessed to have my neuro. He is always way behind (as in an hour or more) and he is scheduled out many months (my next appt is June 12, 2009 and that was the next avail appt when I booked it after my appt a couple weeks ago) BUT he is caring and takes all the time I need when I'm in there. He also has a wonderful nurse and assistant who handle everything in between. He will also call me on the phone if I need him and will squeeze me in the schedule if there is an urgent concern.

One of the best things he does is makes sure to rx enough of a drug. For example, my Provigil rx is written as 2 doses of 200 mg per day. He does that to make sure I can get enough with one copay even if I don't need to use that much every day. He is sensitive to the fact that things can change quickly and that it is much easier to adjust dosages if you have enough of the med on hand.

He gave me a titration schedule when I first started this and told me to adjust anywhere in between 50 mg per day up to the max of 400 mg per day. He told me to just do what I needed to for my body and to take occassional breaks from it if it stops working. I cannot imagine a neuro scolding you for not taking MORE of this drug. It is a powerful stimulant.

Unfortunately for me, Provigil just isn't working for me anymore. Now, we are talking about maybe trying an ADHD type of med like Adderall depending on what the neuropsych testing reveals.

I hope you get through to this neuro and that he sees your point in this. I hope this is just the office staff being a bunch of morons and that it doesn't really reflect him.