I have been fighting the weary to the bone fatigue for months now. I got so tired of being just a lump laying in the house. I'd just go to the store and come home and take a three hour nap. I conveyed this Monday to my family doctor. I told him that I was ready to through in the towel. He told me that he is starting to believe the fatigue is truly due to the CLL. He started to leave the room then he stopped and came back. He told me he wanted to try something but is would be kind of a long shot. He gave me a few samples of Nuvigil. It is meant for people that has narcolepsy and people that work shift and have trouble staying fully awake. I took my first one before work this morning. I could feel it, gently, on my way to work. I felt energized and no brain fog all day. I came home and actually mowed my front yard. My breathing seemed much better. I can climb stairs without getting winded. Now granted this was my first day. I'm really hoping it doesn't cause any sleep or greater fatigue when I wake up in the morning. It's something to keep in mind.
Nuvigil---- WOW: I have been fighting the weary... - CLL Support
Nuvigil---- WOW
Please let us know if it caused any sleep issues. I would love to try it, but I am very sensitive to anything that keeps you awake. Hope it works for you!
BeckyL
Sounds wonderful! I hope it continues to work for you and I look forward to hearing your next report.
Well my first night of sleep taking the Nuvigil.I felt like I slept good last night but I think I didn't get as deep of a sleep as I usually get. That could be waking up and not feeling that groggy feeling I usually feel. I got a little sleepy around 10:30 last night. So far so good
Today went very well. I went to Petsmart for dog food then went to the grocery store and did a weeks worth if shopping. Came home put the groceries away and cut up a watermelon for my wife. She had knee surgery last week and I knew everything was going to be on my shoulders. I was dreading it. I had it planned to go to Petsmart on my way home Friday then go to the grocery store Saturday then finish what I needed on Sunday. It felt so daggone good to do it all in one day! My wife kept asking me if i was pushing myself. I didn't fell like I did at all. It's 9:30 PM and I am starting to get tired. Fingers crossed this keeps up!!!
I tried to get a script of this approved by my insurance - and they would not - so they are now paying quite a bit more for my gazvya - but I did not really push it.
I kind of wonder if you notice any personality changes or anything.
My doctor gave me three weeks of samples to try. When I checked on the insurance coverage I did see where it does require authorization from them. I'm going back to the doctor next week and will have him work on this before I run out of samples. My doctor has provided samples to people that couldn't afford certain drugs that he has sample of. I'm hoping he can work some magic on this. It would be so disappointing to think I'd have to go back my old self. A 30 day supply is around $300. I could manage that but it would put a strain on my finances. I'll wrestle with that decision when it gets here. If not, hopefully my doctor can keep me supplied in the mean time.
Funny you mentioned the personality changes. The one thing I note, and I just thought of yesterday, is I'm way more upbeat and thinking more clearly. I have a more can do attitude. I hope that sticks around. I'm thinking this might be coming from the more energy I have. I'm a real grump when I'm sick or tired. I hate myself when all I can manage is a short task. I've been paying someone to mow my grass because I just couldn't do it. I came home Friday after work and mowed half of it without getting tired or winded. I hate the only thing I did on weekends was lay around and hope to rest up to get me through the work week coming up. So I'm thinking that's why I have been so upbeat.
I just went to Nuvigils website, nuvigil.com They have a card on there that you get your first fill for free and you never pay more than $5 for refills. I'm going to my pharmacy today and see if this works, problem solved if it does.
I started taking Provigil, the earlier version of Nuvigil, and now a generic called Modafinial, several years ago. It has been a life saver, clearing brain fog, boosting mental energy and to a lesser extent physical energy, though definitely connected, and without experiencing noticeable side effects. I have always had sleep issues, so I cannot necessarily blame Modafinil, we will all be different. I've been splitting the pill to stretch them out. Occasionally taking the other half for the afternoon slump.
Warning - Nuvigil and Modafinil are CYP3A4 reactive and counterindicated for use with Ibrutinib. I have just started Acalabrutinib in the NIH clinical trial. There was some concern, but they have approved my contintinuing to take it. What a relief! Acalabrutinib does not involve the CYP3A4 enzyme.
I have taken both Nuvigil and the older generic. Only difference for me has been the price. Unfortunately, actually obscenely, the patient assistance program does not cover you if you are on Medicare. My Part D copay for the generic is now up to $165. per month. Almost double what I used to pay for the Brand.
Be sure to check with all of your doctors before taking one of these. My cardiologist nixed them. Sigh!
I had a nuclear stress test this spring so I'm good to go. Sorry to hear about you not being able to take it
I doubt it. It might help with fatigue, but set off my heart issues. So much fun getting old! LOL!
Well I've been on NuVigil for 2 weeks and it's been great.I have found out that you can over do it. I have tons of energy through the day and able to sleep at night. I'm back to cutting grass and running around. I haven't had any side effects.
Well I've been on Nuvigil for a month now. Still having energy and sleeping like a baby at night for the first time in a long time. I have always wake around 7-8 without an alarm and always said I'd love to really sleep in for at least one morning. We last Saturday I slept until 11:30 and last Sunday I slept in until 10:30. I'm thinking that the Nuvigil is keeping me going then it catches up to me when the Nuvigil starts wearing off giving me really good sound sleep. My breathing isn't much better when I exert myself. My persistent cough has gotten much better also. I had to get a PA, prior authorization, for my insurance to cover the Nuvigil. They won't cover the name brand but they do the generic which has acting as good as the name brand. I pay $10 for a 30 days supply. I was shocked at the out of pocket cost when I saw it. $598 for the generic! That's almost $20 a pill.
Thought I would update this post. I'm still taking the Nuvigil and it's been great. I can't tell if there have been any side effects because I haven't noticed any. They did switch me to the generic form, Armodafinil, can't tell any difference from the name brand. I lost my medication coming back from vacation and I can tell you that was the longest 3 days ever. I slumped back into severe fatigue on the 2nd day, just like the old days. I biggest fear was becoming addicted but I haven't.
The Final Countdown
A Little Late In the Game, now I'm cramming for info
"Reasonable" time off work
No paxlovid, update 
