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-   -   provigal? (https://www.neurotalk.org/multiple-sclerosis/103163-provigal.html)

Dejibo 09-16-2009 03:36 PM

provigal?
 
have been whining about fatigue lately, and the MD tried me on amantadine with out good results. Today he gave me an RX for Provigal.

Anyone else on this? What is your experience? Tips? Tricks? suggestions? I hate taking new stuff, but I cant get out of my own way. I need a boost.

barb02 09-16-2009 03:40 PM

I have had 2 boxes of provigil samples sitting in a closet for over a year. I have been afraid to try it. I REALLY hate trying new stuff. Hope it goes well.

Dejibo 09-16-2009 03:57 PM

Quote:

Originally Posted by barb02 (Post 567179)
I have had 2 boxes of provigil samples sitting in a closet for over a year. I have been afraid to try it. I REALLY hate trying new stuff. Hope it goes well.

Me too! :eek: I really really hate taking stuff.

notasperfectasyou 09-16-2009 04:29 PM

Kim has been on Provigil for years, it's a real HUGE help for her.

She started out on 100 and was moved up to 200 a few months later, this was maybe about 9 years ago. She takes it in the morning and it gives her more "day". There are no down sides to this, unless you accidentally take one before bed :eek:

This also makes me think of something we recently learned about caffine. It turns out that cryptic CPn is a possible explanation of caffine crash or induced "MS" symptoms. I'm a caffine user, I need caffine. Some MS'ers have a unique caffine profile wherein you get a temporary burst, but then crash hard. (not the caffine addict profile) Kim was like that and it turned out to be CPn related. Just sharing.

Ken

Kitty 09-16-2009 05:39 PM

I like Provigil. I only take it occasionally, though. I'm glad I had my rx filled (while I had insurance) all those times when I really didn't need to. that stuff is close to $900 for a 30 day supply! :eek:

NurseNancy 09-16-2009 05:55 PM

it's not bad. it doesn't make you nervous or anything, at least me anyway.
i've tried it but it wore off by the afternoon and that's when i'm most tired.

i was told not to take it past 1 or 2 o'clock because i wouldn't be able to sleep at nite. i honestly could drink a cup of coffee and have the same effect. but, it was helpful.

janiese 09-16-2009 06:14 PM

Provigil as needed for over 10 years
 
Quote:

Originally Posted by Kitty (Post 567224)
I like Provigil. I only take it occasionally, though. I'm glad I had my rx filled (while I had insurance) all those times when I really didn't need to. that stuff is close to $900 for a 30 day supply! :eek:

Provigil
I have been taking Provigil as needed for over 10 years. I have never paid over $100 US dollars for this drug. Even if I don't need it, I still get it refilled and store it in my closet. It has a long shelf life. I'm using some now from 2006.

Snoopy 09-16-2009 06:38 PM

I have used Provigil, I didn't like it.

In my case: it made me very shaky, a side effect I cannot tolerate and in most cases I would be asleep 30 minutes after taking it.

To be fair, ANY stimulant has the opposite effect on me - they make me tired :icon_rolleyes: I can even drink coffee and go to sleep :icon_rolleyes:

You won't know if Provigil will help you unless you give it a try.

Blessings2You 09-16-2009 06:48 PM

I took it for a while, and my neuro keeps renewing the Rx in case I need/want to take it again.

It did make me a bit jittery, hiked up my heartbeat, and gave me nightmares if I didn't really fine tune when I took it.

I'm pretty sensitive to caffeine also. Ask my husband--if I drink a half glass of diet coke mid-afternoon, I'll either be hollering in my sleep, or still talking four hours after he falls asleep. Or both.

If I need to be bright-eyed and bushy-tailed (as if) I'll have a diet vanilla Coke ahead of time. For me, it's about equal to Provigil in efficacy.

ewizabeth 09-16-2009 07:44 PM

I'm taking Provigil now. I tried in in the past but it made my blood pressure go up for some reason. This time that isn't happening, go figure. It seems to keep me awake and I can get more done. I'm trying to find another job and hoping this will allow me to keep working. I get killer fatigue and it's hard to get myself moving and get things done.

The real test will be if I find a full time job and see if I can handle it. At my last job I worked four, ten hour days so I rested midway through (had Wed. off).

Riverwild 09-16-2009 08:48 PM

I've been on Provigil since 2005.
I started out at 100 mg. q day. It was increased to 200 mg. q day and then 200-400 mg. PRN

I gauge my dose on what I have to get through. I do 12 hour shifts, work as much OT as I possibly can when it's available, and want to function outside of my job as well as I can, and enjoy myself while doing it. I don't have any problem sleeping. I find it "clears" me so I can do what I need to do when I need to do it without wilting in the middle of doing stuff.

I don't take it every day since I don't want to wear out the effect. Generally it's 100-200 mg q day, but there are those days when I need more.

Start out small but ask for the 200 mg. pill on the scrip right from the start. You can split the pill. It's hugely expensive, but if insurance covers it, you are better off with the larger pill in case you have to increase up.

I stockpile. This is one drug I cannot live without if my insurance ever dies, and the U&C on my last refill of 200 mg pills was $2435.67 for 180 pills.

It's coming off patent soon and Cephalon has introduced a new one called Nuvigil. The only difference is one inactive isomer. (check Everyday Health for the explanation for that, it's where I got it from) so Provigil should be coming down in price soon, since the generic market will be opening up on it.

Dejibo 09-17-2009 08:28 AM

will pick up my script today. I hate taking any new things. I hate taking anything more than an occasional advil, and here I am on baclofen, and xanax, and copaxone and mscontin, and prilosec, and claritin, and cod liver oil, and vitamins, and calcium, and ....the list goes on and on...

its worth a try. maybe I can get moving again. thanks for the great responses. :hug:

mrsD 09-17-2009 08:54 AM

Quote:

Originally Posted by Dejibo (Post 567432)
will pick up my script today. I hate taking any new things. I hate taking anything more than an occasional advil, and here I am on baclofen, and xanax, and copaxone and mscontin, and prilosec, and claritin, and cod liver oil, and vitamins, and calcium, and ....the list goes on and on...

its worth a try. maybe I can get moving again. thanks for the great responses. :hug:

What are you taking cod liver oil for? May I ask? If it is for the Vit D? New studies show the Vitamin A blocks absorption of Vit D from cod liver oil. Cod liver oil is not a good source of EFAs either. Regular fish oil is designed for that.
This Vit A negative effect is mentioned on that new video from UCSD medical school that I put up before. That video suggested not using A when you need good D absorption.

Dejibo 09-17-2009 01:11 PM

I take the Cod liver oil for a vit D suppliment. I am not on a Vit A suppliment. I have also seen a nice rise in my blood serum levels of vit D since being on it. I am allergic to shrimp so I have to be careful of some of the fish oils that are out there. There is a nice Krill oil available and I hear great things, but since I am iodine allergic, I need to stay away from sources that mix shelled fish into the mixes. Cod liver was a safer alternative for me.

My Provigal is held up in insurance land. My ins company is asking my MD to provide answer as to why he wants me on this...sheesh! we already have folks standing between me and my MD. Why cant my MD just tell me what to go get, and have the pharmacy give it? It will be next week before I see the stuff.

mrsD 09-17-2009 01:31 PM

Well.... Cod liver oil contains retinol, real Vit A, (not betacarotene).

http://en.wikipedia.org/wiki/Cod_liver_oil

It is also less pure or less free from toxins, than fish body oils. Fish body supplements do not have either vitamin in them. They are processed by distillation, and free of heavy metals.

There are very high quality D3 only supplements, out there now that are really inexpensive.

NOW brand is very good.

freeinhou 09-17-2009 04:43 PM

I tried Provigil in 2003. Caffeine pills work better.

I expected it to do something it couldn't do. It's not for keeping you going on 4 hours sleep a night and working 80 hours a week. I forget dosage. 200 mg sounds familiar.

Tom

ewizabeth 09-17-2009 09:10 PM

Quote:

Originally Posted by freeinhou (Post 567605)
I tried Provigil in 2003. Caffeine pills work better.

I expected it to do something it couldn't do. It's not for keeping you going on 4 hours sleep a night and working 80 hours a week. I forget dosage. 200 mg sounds familiar.

Tom

You are pushing too hard Tom, you should get more sleep.

I use both after you mentioning the caffeine pills. My stomach can't handle actual coffee anymore most of the time, so I take a caffeine pill and 100 mg of Provigil in the morning after breakfast and with my other pills and vitamins.

I take another 100 mg of Provigil after lunch, and a half of a caffeine pill if I need it.

Dejibo, you can break the 200 mg Provigil tabs in half, and cut them again if you use a pill splitter. I had to start with 50 mg and very slowly work my way up.

msarkie 09-18-2009 09:35 AM

My neuro has me take 100 mg every morning whether I think I need it or not. He says there is a cumulative effect and I will have better results taking it regularly than as needed. I had started out taking it intermittently and couldn't tell it benefited me much. Now that I take it daily I can tell that I have less of an urge to sleep during the afternoon.

Dejibo 09-18-2009 10:21 AM

well, its a dead issue. My insurance company has turned down my MDs request for this rx. They said they are not paying $1300 per month because I am fatigued. The neuro argued that its a bona fide neurological acceptable treatment for MS patients, and they said ...NoPE! If I was narcoleptic or other such disorders they would consider it, but since I am not, its considered off lable usage of the med, and are not going to allow it.

Why is it that my MD cant just say "I want my patient to use this med" give me a script, send me to the pharmacy and have them fill it, bill my insurance company, and thats the end of that? Why is it some paper pusher gets to tell the head of neurology that his patient cant have the meds he prefers them to take? Sheesh! They also said between all the meds I take every month, including copaxone, if I add this it will bump me to the limit of acceptable spending on my drug plan. WTH?

I guess I will start drinking caffiene drinks, and such. He did offer me things like prozac and amantadine, which didnt work in the past, and other alternatives. I was looking forward to giving this stuff a try.

Back to the drawing board:(

ewizabeth 09-18-2009 10:46 AM

I would fight the insurance company on this, and have your doctor do so too. That really isn't fair. :mad: It will be out as generic soon, then they wouldn't have to pay as much.

mrsD 09-18-2009 01:55 PM

This medication is INSANELY overpriced.

I think it started out this way because of the limited FDA approval.

Then they tried to get a child's version approved for ADHD, and that bombed out too.

This is an interesting monograph.

http://en.wikipedia.org/wiki/Modafinil

hollym 09-18-2009 02:16 PM

I'm taking generic Ritalin because Provigil stopped working for me. The Ritalin works for me. I know Snoopy is taking an ADHD type of stimulant drug with success, too. Maybe ask about that.

RedPenguins 09-18-2009 11:26 PM

dej - I would fight this - or rather, have the neuro and pharmacy fight it for you. I was told by my pharmacist that if my doctor says a medicine is medically necessary for my condition, that the insurance company HAS to pay for it.

I take provigil daily - 200-400mg as needed.

I also use a patch from time to time. It is an ADD medicine called Daytrana. A psychiatrist I work with mentioned it to me - that it might be helpful for fatigue and it would be better than any pill because it is a patch, it is a consistent flow in the bloodstream. I told my neuro about it and he gladly prescribed it for me to try. I wear it for 9 hrs during the day, then take it off. There was a period of time - before I did HiCy where I could NOT survive a day without it! Maybe your neuro would consider this?

Also, does your neuro not have samples of Provigil or Nuvigil for you to try? Nuvigil is the new provigil, as someone else here mentioned. My doc also gave me samples of Nu - and a coupon for a free 30 day supply. If you'd like, I can mail you the coupon? All you would need is a prescription.

One other thought - if you have a rx, can't you go online and get it from a canadian pharm for dirt cheap???

Good luck,

~Keri

RedPenguins 09-18-2009 11:29 PM

I just did a search and you can get 90 pills for roughly 100$. Which is about what it would cost with insurance, as on most plans, Provigil is the highest level of copay for meds.

Dejibo 09-19-2009 08:09 AM

Spoke to the nuero who used up three appeals to the insurance company. All appeals were denied. Its an "off label" use to use it for MS patients. that was their final sticking point. My neuro told me that he has now spent a great deal of time, and effort on this, and he simply cannot spend 6 hours a day fighting with these insane folks. He has his nurse continuing to peck away at them, but thus far they are not budging. They are also saying to add provigal would put me over my alloted monthly allowed expense for medicines. I have a golden policy, and it covers many things, but lately they have been real pigs about many things. They have demanded that if you use brand name vs generics, your MD must sign a paper certifying that this is absolutely needed, and not just a patient preference. Many thyroid meds of generic wont work as well as brand name, same for some cholesterol meds, and others but the insurance company must certify in advance that you need this to be brand name EACH MONTH!

This is insane to have this wonderful policy and now have so many restrictions upon it. I used to have 10k per month allowed in medications. now its 5k, but they removed the 3 million dollar limit that was placed on it. So, they made it better, but they also made it worse. They fight you on everything from epi pens to brand names, to off label useage of meds. Its insane that my MD cant say he wants to give me xyz, and have them order it. Even if its 10cents or 10thousand.

Sheesh, everyone talks about how there will be no beaurocrat between you and your MD...there is already a beaurocrat sitting there! Since they already exist I know that to be an untrue statement. If I need surgery, or an in office proceedure, it has to be pre certified! my MD cant simply say "you need your tonsils out" he has to call 20 people and fill out 3 days of paperwork before he can even offer that as an option. They even wanted to know why I was seeing him for a neuro visit when I am considered to be a patient of another clinic. Sheesh!

My MD said he simply cannot continue to peck away at these folks, and that is what they hope for. They hope that they make it so inconvienent to keep fighting that the MD simply gives up. The appeals process is insanely complicated as well. He was turned down for 2 appeals because they didnt feel he met the proper paperwork requirements for "burden of proof" If this was insulin or chemo, we would keep fighting, but a med for fatigue? there are other avenues to try first. Then if we run out of road, we can revisit it.

Thanks for the support. :grouphug:

ewizabeth 09-19-2009 02:22 PM

Yikes, they call that a golden plan? I'd hate to see what's allowed on their basic plan. :confused:

Riverwild 09-19-2009 04:13 PM

As an aside to this discussion and the whole insurance company fight thing, my last refill on Provigil, I had to have a prior authorization as usual for the year's prescription. Usually the doc sends in the paperwork and I get it.

This time it got held up repeatedly, despite me calling the insurance co. and having them call the pharmacy and help them to understand that I do NOT have "Wellpoint" or "Nextcare" or whatever the heck they were talking about when they said repeatedly that those entities were refusing to okay the scrip.

It eventually got worked out in my favor, but in the middle of it all, my co-pay changed and the co-pay was $40.00 dollars more.

I fought it. I insisted on an apology and that whomever was responsible for the screw-up be trained in how to bill my insurance company. Each party blamed the next and the only one I KNOW did everything correctly was my doc's office. I also asked for the $40.00 back on the co-pay.

I got a letter today from the insurance company with a check for $40.00 and an apology, along with a copy of the investigation letter and the apology from the pharmacy. The pharmacy investigation went all the way to the top of the chain and they say that they are putting in place an informational sheet that specifically explains how to bill for my insurance plan.

It DOES pay to make waves. I was just so glad to get the drug I almost gave up on fighting, but figured I had nothing to lose and I WON!!! :)

jrsygirl 09-20-2009 07:40 PM

I am on Nuvigil (a new time released Provigil). It has helped me so much! The afternoon fatigue was unbearable. My insurance company now refuses to pay for it because it is not approved for MS. I don't know what to do. Does anyone have a resource for purchasing provigil at a discounted rate?
Thanks

RedPenguins 09-20-2009 09:42 PM

Jrsygirl - do a search for canadian pharmacies - as long as you have a prescription, you can order from there. I found provigil for about $100 for 90 pills.

hollym 09-21-2009 08:33 AM

Below is a link to Costco's website to see pricing. I don't know what strength and dose frequency that your rx was written for, but these are actual full prices without insurance.

http://www.costco.com/Pharmacy/frame...ticle=PROVIGIL


My idea would be for you to see if you can get a free sample from your doc first to see if it even helps you. I had one insurance company absolutely refuse to cover this drug, but my present company will cover it.


If this drug is completely out of the question for you, ask your doc about stimulants like Adderal or Ritalin. I actually have had better luck with Ritalin lately and it is generic and cheap.

braingonebad 09-22-2009 08:56 PM

Quote:

Originally Posted by freeinhou (Post 567605)
I tried Provigil in 2003. Caffeine pills work better.

I expected it to do something it couldn't do. It's not for keeping you going on 4 hours sleep a night and working 80 hours a week. I forget dosage. 200 mg sounds familiar.

Tom


I tried caffeine pills too. I think I'm immune to their effects - and I'm only trying to work four hrs a week and sleep 80 hrs a night.


:D

But I can drink 4 cups of Bob Evans coffee in half an hour and not notice.

Provigil, when it did help, was not enough to do what you need. But it was enough for me at least not to have to debate whether I really had to go potty bad enough that it was worth walking *all the way* to the bathroom.

It sux being so tired that's an issue.

RW - :cool:

I had to fight, too. It was worth it. They said I had to try ritalin and the other ADD drug. I wrote a long letter, followed with a long phone call both about the affects and warnings of those meds and why I should not be taking them. I got my provigil and an apology too.


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