Friday, January 14, 2011

Provigil and Nuvigil - the difference - MS

Writing this in the off-chance someone is being switched from Provigil to Nuvigil, maybe has MS and maybe doesn't.

I was and am back on Provigil. When I searched for "Provigil Nuvigil difference" on the Internet, I mostly found things by people with narcolepsy who were on either one with mixed reactions. I found a bit on MS and just Nuvigil, mostly positive. But who is being converted, why, and how's it going for people with MS? There's not much there, and experiences will differ, but here's mine.

Cephalon is losing its patent for Provigil in 2012, so the price of it has been increasing. Meantime, Cephalon is heavily marketing Nuvigil which is a single isomer version of Provigil. Nuvigil is stronger than Provigil and acts longer, so everyone is going on it. It should work better. But for me? It backfired.

I started Provigil as an off-label drug for MS-related fatigue, although a small clinical trial did show it works for MS. Provigil is also used for sleep apnea, which I think I have/had, but Provigil changed that. Nuvigil sounded good as well. But it's not exactly the same as Provigil.

I knew pretty quickly that Nuvigil wasn't working for me. Sure - I was awake - but I was in a cloud at best. In the afternoon, I drank coffee like water and still wanted to fall asleep. I couldn't sleep - it was horrible. People at work knew about this. They said I looked tired and I was - I was a walking/wheeling zombie. And I was depressed. When you go off Provigil, this can happen, and it did. I had 2 really bad days before I just wanted to stare at a wall. I didn't really feel like the medical community believed me, but I knew I wasn't me. I fought to get back on Provigil because physically as a zombie I was also getting worse.

It took a bit of time, but I got Provigil back. And quickly, I was fine. Has this happened to other people? Drugs are so tricky. Does the combo of Provigil and Ampyra mean anything.

Back quickly, and today another Ampyra breakthrough for me. I keep walking more and more. I'm getting stronger. And I believe everything helps. Leaving work, I wanted to scream "YES!" at walking further, again. I take Ampyra; I take Provigil; and I work very hard on a bunch of boring exercises. I got in my car and turned on the song that reminds me that everything is possible - just show people. I'll put part of the lyrics after this post. It's from Curious George. I'll turn the whole thing upside down, from Provigil to Ampyra and everything I can find.

"I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away."

"Who's to say what's impossible?
They forgot ... "

Peace.
--------------------------------------------------------------------
Upside-Down Lyrics

Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away

Who's to say
I can't do everything
Well I can try
And as I roll along I begin to find
Things aren't always just what they seem

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
This world keeps spinning and there's no time to waste
Well it all keeps spinning spinning round and round and

Upside down
Who's to say what's impossible and can't be found
I don't want this feeling to go away

Please don't go away
Please don't go away
Please don't go away
Is this how it's supposed to be
Is this how it's supposed to be

18 comments:

Sara Bellum said...

Hope you will post on patients like me.

I am on 150 mg Nuvigyl for MS fatigue but insomnia is becoming a problem. Pharmacist called company and said ok to cut to lessn potency so down to 75mg but still have insomnia so wil cut again. LI've the boost it gives me during the say.

My neuro said combo with ampyra not good.

Sara

Suzanne said...

Beth, your comments are so validating. I had the same experience that you did, so I'm glad to know it's not just me! I'm back with Provigil after trying Nuvigil and I'm glad to be. Like you, I'm also taking Ampyra, though am not sure it helps all that much, but I'll keep using it.

Sara, why is it not good to use Ampyra with Nuvigil? Also, my doc gave me a short rx for Ambien to get my sleep schedule back on track, and it seems to be helping. Just make sure you're in bed before you take it. It can really knock you out!

Ms Andisue said...

Beth- thank you for posting this info. I take Provigil and no one has tried to switch me but I'm thrilled to know it will be off patent in 2012, making it more affordable for so many who need it but can't afford it now.

All the best to you and wishes for your continued improvements.
Andrea

Rosemary said...

Hi Beth, They also switched me to Nuvigel. I got a letter from the pharmacist not the doctor I take 1/2 of a 250 mg of Nuvigel in the morning. It isn't as long lasting or as effective as the provigel for fatigue. I think our HMO is trying to save some money but I am going to ask about getting back onto Provigel too. The quality of life with fatigue and MS is a challenge so we need to take advantage of everything available. Take care Dear One. Rosemary

ms'er faith said...

Sara - how would neuro know that the combo is bad? It hasn't been studied and I think it's good. It's validating to know that others are having similar experiences and is why I wrote this blog. Hopefully other people can get generic provigil soon.

Clare said...

tHANKYOU FOR IMFORMATION.

I might be quiet on my blogs but Ima am always looking at yours :)

buy provigil said...

I experienced much greater effects from Provigil on initial exposure than I have during regular, ongoing treatment. Had the initial effects (perfect alertness without excessive excitability) continued it would merit a rating of 10. However, I still find it indispensable and would be hard-pressed to give up that particular prescription.

Nick of the Commons said...

I am going to go out on a limb here.....Were you eating a big healthy breakfast and eating regularly? It could have killed your apatite and you were suffering hypoglycemia, only without feeling hungry.....That would also increase anxiety, reduce awareness, make your vision blurry at extremes, feel lethargic but not able to sleep....maybe worsen rapid heart rate, ect. You need to eat, even if you are not hungry.

And i mean this with nothing but respect and genuine concern, not as a judgment....a lot of women are pressured to be thin in our society, and anything that kills apatite can worsen an eating disorder....and i could be totally wrong, I just want to through it out there. It might not be conscious, but if the drug takes away your hunger you might not even notice that you are starving yourself. You skip the hunger and go immediately to hypoglycemic symptoms.




Nuvigil feels stronger to me....at least 150 = at least 300 of provigil, so is 1.5 provigils....there could be other differences....There are other unlisted chemical byproducts in any process, though we dont know what they are besides the ones they deem "active". A generic process could theoretically produce different byproducts....possibly active and possibly not. The "active" chemical should be the same structure and dosage though, so they call it bio equivalent.

or maybe its exactly the same and the left isomer, AND none of its byproducts in the body, actually help you.

Angi said...

Hi there,

My Neuro has me on Nuvigil (50 mg) 2 pills in the morning for MS Fatigue and Clonazepam 0.5 mg for MS Spasticity.

I feel that the Clonazepam is canceling out what the Nuvigil should be doing for me, because he has me taking it 4 X a day.

If I do any traveling to a store, or visiting a friend, by the time I get home I am so drained that I have to take a nap.

I don't have trouble with insomnia (Unless I drink a soda after 9pm), because I take Clonazepam & Lexapro (10 mg) at 10 pm.

I guess I should call my Neuro on Monday & let him know this, my own stupidity for not telling him sooner. :-(

I hope everyone has a great day today and an even better one tomorrow! :-)

Sincerely,
Angi (55 yro female with RRMS)

sharon said...

Been using provigil for over 4 years. It was the last resort prior to having to file for disability. It has worked beautiful and I haven't had too many issues other than it doesn't seem to have the same affect as it once had. Insurance made me switch to Nuvigil and I am having a few issues with sleep deprivation and getting the shakes. Now, after reading all the posts, it makes sense and I think I will cut back the dosage. I did see that it isn't for patients with mitral valve prolapse (which I also have)...hope the doctors know what they are doing....Other than the above, seems to be doing ok...I like provigil better but....

Sharon

Carole Biskar said...

Hello,
I have a new insurance carrier and just found out that they will not pay for Provigil because it was not effective for people with MS. I have taken it for over 4 years and find that it helps with fatigue. It has made a huge difference in my quality of life living. Any suggestions or thoughts on next steps, writing an effective appeal to the insurance company, etc.? Thank you!... I am at a loss. Also, one post stated the patent was expiring in 2012 so costs would be less. Any idea when this will happen?

Carole
davids@canby.com

Ellen said...

Carole, I'm in the same boat that you're in. I was forced to switch pharmacy benefit providers from Medco to CVS/Caremark, and they will only cover Provigil for sleep apnea or narcolepsy. They've denied two appeals already. Apparently, MS fatigue doesn't merit treatment in their book. Before Provigil, the fatigue was so profound that walking was much more difficult and I couldn't stay lucid enough to read or do much of anything but sleep. As a less expensive option, my doctor tried me on Ritalin, but it not only didn't work as well, but it had disturbing side effects mostly with my moods and mental state, which I've never had with Provigil. I heard that the patent will expire in April.

I do appreciate the warning on Nuvigil. I'd wondered what the difference was.

Teresa said...

I too had been on provigil for about 3 years when I had to switch to nuvigil. Same results as Faith. I loved being on the provigil. I had my energy back, and I had my life back! Now, our prescription drug plan changed from Medco to CVS as well and like Carole, I am now being denied either medication. Anyone had any luck winning an appeal for off-label use of provigil with CVS caremark?

ms'er faith said...

Wow. The same pharmacy switch has happened to me now. I have contacted the MS Society to get their thoughts. It has gone generic now so that is good. I can't stay awake without it and I also get extremely depressed to the point I'd be scared I could hurt myself. But it is generic.

Casey said...

My husband has been on Provigil for several years now. We just switched from Medco to Catamaran and was just denied as well. I'm calling our insurance company today to see what can be done. Our insurance has stayed the same, I don't understand why just a switch in mail order pharmacies would affect their covering the medication.

ms'er faith said...

Switching insurance affected mine as well and my neurologist spent 40 min on the phone about it with the insurance company. Going off all of a sudden is very dangerous. I hope people know this!

Nuvigil Believer said...

Nuvigil is a lot more effective than Provigil as long as you can afford it or have insurance. I really believe in Nuvigil, it works wonders. Whatever its on-label/off-label "official" uses I don't care, it's fantastic in my eyes. Just gotta get your hands on it without having to sell your first born just to get your months worth. Thankyou.

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