Finally something for fatigue!

[Guest]

Hi Melody,
I would say dear heart that if Bucky has insurance that will cover it, even though that is still expensive...I can tell you from personal experience that Nuvigil is that true bar of gold! It has the same active ingredient which is modifinil, but Nuvigil is a big difference. Provigil which is the same as modifinil lasts 8 hours or so, as to where Nuvigil lasts 15. Maybe Bucky can get his doc to get one of those free coupons? Plus if you go to Nuvigil dot com they used to have a coupon for a free weeks worth if you were not paying cash or on any type of government program, ie., VA, medicare, medicaid etc. The free month I got was for the 250mg. The 1 week samples I got are only 150mg and that works well for me. Now remember I dont take it for ALS, my dad does. His doctor had him on provigil/modafinil doing 200mg first thing in the am and then if he doesnt feel like it was enough his doctor told him to take another 200mg at lunch time. The VA does not cover Nuvigil yet as it just came out last July. Best of luck to you and keep me posted on how Bucky is doing~!
Hugs, Kari

 

[Guest]

My insurer approved provigil for a year.. It worked well for me at the time but I tended to overdo it and had too much pain and had to catch back up to "normal" for a couple days after taking provigil. At the time I was taking vicodin for pain, with poor pain management compared with where I am at now with Morphine. Im also no longer taking baclofen..

I had saved a couple of pills of Provigil and took one for the first time since switching to morphine a few months back.. Wow big difference.. Made me a little manic energy wise and ended up staying up for about 20 hours straight.. Should have just taken half a pill I guess.. Anyway, I am going to fight the insurance company on this one and in the meantime pay for it myself if I have to.. Would be nice to spend more of the holidays out of bed this year! I have talked to others with ALS that have had really positive results with Provigil as well.

Happy holidays everyone

Rob

 

[Guest]

Hi ALL! Well, here is the story. My daughter was diagnosed with narcolepsy 2 weeks ago. Her doctor gave her 150mg tablet samples of NUVIGIL. She took one, and it was like she had just woken up from a 2 year sleep. Coincidentally, my dad went to his ALS specialist in Seattle who gave him samples of the same thing for ALS fatigue, only his were only 100mg. (he weighs 210 - my daughter 120) My dad said it didn't do anything for him and stopped taking them. I have Fibromyalgia and struggle with extreme fatigue, so after calling my pharmacist and making sure that it would not interact with anything I am already taking, I checked it on the internet, and sure enough Fibro patients take it for fatigue as well. I was just dragging the Monday of Memorial Day weekend, and was planning on having to do the usual of laying around and napping, and I thought, well, I will try this little pill. WOW! I got so many chores done! The next day at work I took 1/2 of one and WOW again, life is good! So, I called my dad and told him that I thought his dose was to small. So he tried 150mg. Nothing. The next day he went back to his ALS specialist and he upped my dads dose to 200mg in the am, and if he didnt feel better to take another 200mg at noon. Guess what folks! IT WORKS! My dad got his life back! He is now once again wanting to go on a cruise! He was out running errands, happy laughing.... feeling like his old self again energy wise! Now 400mg would put me in the hospital, but with PALS it is different. Happy days! Now my dad went to get his script filled at the pharmacy. Here is the bad news. Had he not had a co-pay with medicare it would have cost 1300.00 for a months worth! Now that would through him into the doughnut hole in about 2 1/2 months. Luckily, he has also the VA. They do not cover Nuvigil, as it was only released on the market in 2009. However, they do accept Provigil which is essentially the same drug except the effects do not last 15 hours like Nuvigil. I checked on the price for Provigil and it was the same as Nuvigil. Thats sucks for me, who is on medicare, and my daughter who does not have any insurance. If there is any type of generic out there I will find it and post it here. Now for CANADIANS Provigil is called Alertec. The key is to get the right dose that will give you the energy you need.
I find this to be a true miracle pill! You can go on Nuvigil dot com and download a free 1 week trial coupon. But it doesnt work for people on medicare or any other type of government assistance. It also does not work if you pay cash. Your doctor may have samples. Provigil has been talked about here on the forum a long time ago. So folks, this new drug Nuvigil is truly a non-stimulant miracle pill!
Hugs! Kari

Is the nuvigil still helping your Dad?

 

[Guest]

Hiya Red! Welcome to our family forum here. I am so honored to be the first one to respond to your very first post! My dad is taking Modafinil which is essentially the same as Provigil, which has been on the market for years and years. He swears by it! The key with PALS though is to take it every single day. Unlike myself, who takes it when I am absolutely dragging every once in a while, most PALS (people with ALS it will work great for the first day or two and seem to not work as well. Thats what happened to my dad. When he went back to his Neuro. the Neuro told him, "no take it every single day and it will work better" and it sure enough did! I have taken both myself, and to me there is a world of difference between Nuvigil and Provigil. The VA covers Provigil aka Modafinil so thats why he takes that instead of the Nuvigil.
Please keep coming back Red, ALS is a beast and this is a wonderful support group to lean on when ya need us!
Hugs, Blubear