MS fatigue medication: Is anyone taking a... - My MSAA Community

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MS fatigue medication

IFwczs profile image
42 Replies

Is anyone taking a good fatigue medication? I asked my neuro a couple of years ago, and he likened that medication (I forgot which one) to Speed (amphetamine). What are the side effects?

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IFwczs profile image
IFwczs
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42 Replies
Peruzzot profile image
Peruzzot

At the MS conference I went to last week that question came up. Dr. Walker said there are currently no FDA approved medications for MS fatigue and the best medication is exercise. He said that there is an epilepsy medication that can help with MS tremors but if the dosage isn't right it can increase the tremors. He said that it could be used for fatigue as well but again the dosage must be perfect or you will have worse problems. Insurance generally won't approve it because it is not approved for that use by the FDA.

IFwczs profile image
IFwczs in reply toPeruzzot

Thank you, this information is very helpful.

Raingrrl profile image
Raingrrl

Hi IFwczs ...Fatigue has been my constant companion since long before my diagnosis. I’ve tried Provigil, Nuvigil, Adderall and Ritalin. All were prescribed off label because as Peruzzot mentioned, there isn’t anything currently approved by the FDA for MS fatigue. All are stimulants. Provigil and Nuvigil helped somewhat. The other two did nothing. I switched between them depending on what was covered by my insurance. I didn’t have any side effects that I remember but I haven’t taken any of them in several years. Too much hassle for too little benefit. And the controlled substances are annoying because the prescription has to be renewed each month.

You may not want to hear this, and it’s not an answer to your original question, but I have had more success by improving my overall health. I’ve changed my diet and I exercise regularly. All of this helped me drop over 15% of my body weight over a years time. I still have fatigue but to a lesser degree. Having retired from a very stressful job and 4 hour daily commute has helped as well.

RoseySawyer profile image
RoseySawyer in reply toRaingrrl

I use to take Adderrall for my ADHD but I still fell asleep when it was in my system. My fatigue took over so much that it didn't last long to keep me up long enough to focus. Rain you're right about eating healthy. I'm still tired but not as much. When I do get tired I just sit down for a little bit then I'm fine after 15 minutes or so and continue on with I was doing. Eating greens helps alot with fatigue and concentration. 😊❤🌷

IFwczs profile image
IFwczs in reply toRaingrrl

Thank you for your response. On the contrary, I love hearing about non-medication management of symptoms. However, my fatigue is caused by exercise before work.

Gma06 profile image
Gma06

I take Adderall and it helps me a lot! Side effect was weight loss.

IFwczs profile image
IFwczs in reply toGma06

Thank you for the information.

ynggal profile image
ynggal

I take Amantadine for fatigue every morning. It’s definitely not like speed! It just helps me be a bit sharper. I have my coffee and usually eat scrambled eggs for the protein. Those things combined with a good night’s sleep work well in getting me through the day.

IFwczs profile image
IFwczs in reply toynggal

Thank you for your response.

erash profile image
erash

I take 1/2 of a 150mg Nuvigil each morning. It helps with both energy and cognition. If I start getting very fatigued (relapse) I increase to full pill. If I cannot take for a day because of a procedure (like a neuropsych test) I feel like I’ve taken a sleeping pill and I’m very lethargic. Unfortunately it means I’m dependent...

When I was first prescribed Nuvigil, I was told take as needed when you feel fatigued but because you need to take first thing in morning, I may not know if I’m going to be fatigued. So I started taking every day.

“Mothers little helper” if u know the song 😉

IFwczs profile image
IFwczs in reply toerash

Thank you. My fatigue usually doesn't set in till the afternoon.

Bodega1939 profile image
Bodega1939 in reply toIFwczs

Yes, my fatigue seems to know the clock time, almost always by 2-3 I am swimming in molasses. And it doesn't matter if I have tried to forestall the whole event by taking little rests]. Then it is a downhill slide until I drop into bed and everything up to that time is absolutely forced after 2 or 3 because I won't give up. What that means is my level of productivity is cut in half. It also means I go to bed too early and get up too early...it is just a mess for me right now.

What it really means to me is I am doing house work, especially bathrooms and kitchen, laundry, cooking, bills, etc. every day and not having time to paint, read for pleasure, garden. I might as well just be a cleaning automaton.

Oh, well. As you can tell I am a tad discouraged as I really don't know what to do about it.

MarkUpnorth profile image
MarkUpnorth

I've been on as many meds for fatigue as I have for pain, for years. For fatigue, Provigil, Nuvigil.... And I became immune to caffeine years ago in college almost drowning falling asleep over pot after pot of coffee. (no, not decaf!) But what really does work is Certain Energizing Strains of Sativa Cannabis. I'm lucky enough to have medical cannabis in our state. It works! I definitely remember what it feels like to use up your spoons quickly, everyday, day after day. Fatigue still sets in early when I cannot use it. Yes, Yes, Yes, exercise (I simply walk, obsessively at least 10K steps a day), and healthy eating staying away from processed foods has made a difference, but it still takes a gummy or chocolate to accomplish anything significant like when I climb K2 or Kangchenjunga! (Yeah, right!) The "hills" here in flatland can be challenging enough!

IFwczs profile image
IFwczs in reply toMarkUpnorth

Interesting, thank you very much for your input.

StacyHayward profile image
StacyHayward

Amantadine helps me most days. But then I have days like yesterday where nothing helps and I’m exhausted.

IFwczs profile image
IFwczs in reply toStacyHayward

Thank you for your response.

JTZES profile image
JTZES

Provigil medically is the strongest medication the doctor can perscribe.

I use extended release and immediate release Ritilian.

I off set that with Vivran.

It isn't the solution but I didn't do well with the Provigil. Really the Provigil made no difference. This and a daily nap is how I get through the day.

IFwczs profile image
IFwczs in reply toJTZES

Thank you, agreed, even 5-minute naps are the best remedy for fatigue. Unfortunately, can't really do it at work...

SueAB profile image
SueAB

I have lived with MS for over 20 years and I agree, fatigue is also my worst enemy. I use Prednisone 5mg when I am on vacation to give me a boost. Otherwise, I use 450 mg CBD oil daily - 3 drops under my tongue twice a day. I have done this for several months and feel this is really making a difference. I purchase this from the Diamond CBD Company and a bottle is over $100, but they always offer discount coupons.

IFwczs profile image
IFwczs in reply toSueAB

Thank you, this is very interesting.

JTZES profile image
JTZES

B12 is another vitiman that helps with fatigue.

IFwczs profile image
IFwczs in reply toJTZES

I guess it's really different for everyone. My vitamin B12 is through the roof, so my PCP told me to stop taking it.

lbenmaor profile image
lbenmaor

Exercise and Alpha Lipoic Acid helps me.

Leslie

IFwczs profile image
IFwczs in reply tolbenmaor

Thank you. What is Alpha lipoic acid?

lbenmaor profile image
lbenmaor in reply toIFwczs

It's a type of vitamin. GNC makes the best type 600 mgs. 2X a day

mrsmike9 profile image
mrsmike9

I was told Ritilin. Not going there...

mrsmike9 profile image
mrsmike9 in reply tomrsmike9

It's like speed.

sashaming1 profile image
sashaming1

My Neurologist originally prescribed Evekeo and it has been replaced with Dextromp - Amphetamin used to improve my "Attention" <my words>. Apparently it's an ADHD drug. No side effects that I have noticed. May work for fatigue too??? Look it up on the internet AND ask your Dr. if it looks like it might work.

IFwczs profile image
IFwczs in reply tosashaming1

Is it working for your fatigue? What's "Attention" ?

sashaming1 profile image
sashaming1

I'm using "Attention" as the brain function for being "Alert."

kdali profile image
kdali

There isn’t a good one, IMO. Keto works wonders.

Ggwhitney profile image
Ggwhitney

I use amphetamine salts/ addetall for fatigue. They work very well initially it was prescribed to take twice a day but I only take it in the morning or I can’t sleep. Only use it when my schedule needs me to be alert

Msstinks profile image
Msstinks

I take provigil/modofinal, (same thing, different names) and it’s great. I only take a 1/2 of a 200 mg pill on days that I have to get out of the house and do things. It really, really helps. I don’t feel any different, I just don’t feel the need to stay in bed and sleep! If I take a whole pill, I tend to be too animated and my husband asks, “Did you take a whole pill today?” Haha. Hope this helps!

dailygrump40 profile image
dailygrump40 in reply toMsstinks

You take 1/2 of a 200 mg pill. I was taking 2 200 mg pills 2xs a day. Yeah 4 . 200 mg pills a day I'm now taking 250 mgs of Nuvigil a day. I find myself switching back and forth between thrm because the effects of them seem to wear down after s while.

anaishunter profile image
anaishunter

I am part of a blind study to evaluate the effectiveness of several drugs on MS fatigue. just started last week. The 4 drugs are:

- Amantadine 100 mg

- Modafinil (Provigil) 100 mg

- Méthylphénidate (Ritalin) 5 mg

- placebo

I don't know what I'm on right now... the study will last several months. I hope it will yield some worthwhile data.

My issue with fatigue is same as Msstinks I just can't get up in the morning.

Peruzzot profile image
Peruzzot in reply toanaishunter

Let us know how it goes.

IFwczs profile image
IFwczs in reply toanaishunter

Thank you, please keep us posted!

Bodega1939 profile image
Bodega1939 in reply toanaishunter

Please give us the URL for the referenced article when it gets published. If you hear the results were ambiguous or otherwise not published let us know that, too. Somehow I must modify what I am doing to not have this really horrible fatigue.

Thank you for letting us be aware of this study.

MarkUpnorth profile image
MarkUpnorth

This same subject came up as an unanswered response....I answered this one before:

I've been on as many meds for fatigue as I have for pain, for years. For fatigue, Provigil, Nuvigil.... And I became immune to caffeine years ago in college almost drowning falling asleep over pot after pot of coffee. (no, not decaf!) But what really does work is Certain Energizing Strains of Sativa Cannabis. I'm lucky enough to have medical cannabis in our state. It works! I definitely remember what it feels like to use up your spoons quickly, everyday, day after day. Fatigue still sets in early when I cannot use it. Yes, Yes, Yes, exercise (I simply walk, obsessively at least 10K steps a day), and healthy eating staying away from processed foods has made a difference, but it still takes a gummy or chocolate to accomplish anything significant like when I climb K2 or Kangchenjunga! (Yeah, right!) The "hills" here in flatland can be challenging enough!

But again, 5 month's later..... I just did ??? I just answered in your other response, 8,000 steps, less than the 10K minimum I push myself for. I did lots of nonsense, garage sales,.....but then trimmed, edged, cut the grass, blew off the concrete..... Yes a Sativa (started at the beginning of the lawn work - prior to any more driving for the day)....did the trick! Always does, like magic!

IFwczs profile image
IFwczs in reply toMarkUpnorth

You are right about healthy food. Unhealthy food does contribute to fatigue. I have read that yoga helps with fatigue, and it certainly helps me.

MarkUpnorth profile image
MarkUpnorth

Yoga....good for some....not my manly reputation! LOL! Tried it with my wife once, she wound up wearing a boot for months! Did damage to her self why???? this is supposed to be...? Me....just dealing with her injury. Yep, not for me.

IFwczs profile image
IFwczs in reply toMarkUpnorth

My yoga instructor told me the had hurt herself many times doing yoga. But she teaches yoga to people with disabilities, such as MS or Parkinson's, so she is very careful and has props. As in any profession, there are good and bad people. Your wife just had a lousy instructor.

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