MS fatigue medication

[IFwczs]

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?

[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 in reply to Peruzzot]

Thank you, this information is very helpful.

[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 in reply to Raingrrl]

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 in reply to Raingrrl]

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]

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

[IFwczs in reply to Gma06]

Thank you for the information.

[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 in reply to ynggal]

Thank you for your response.

[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 in reply to erash]

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

[Bodega1939 in reply to IFwczs]

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]

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 in reply to MarkUpnorth]

Interesting, thank you very much for your input.

[StacyHayward]

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

[IFwczs in reply to StacyHayward]

Thank you for your response.

[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 in reply to JTZES]

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

[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 in reply to SueAB]

Thank you, this is very interesting.

[JTZES]

B12 is another vitiman that helps with fatigue.

[IFwczs in reply to JTZES]

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]

Exercise and Alpha Lipoic Acid helps me.

Leslie

[IFwczs in reply to lbenmaor]

Thank you. What is Alpha lipoic acid?

[lbenmaor in reply to IFwczs]

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

[mrsmike9]

I was told Ritilin. Not going there...

[mrsmike9 in reply to mrsmike9]

It's like speed.

[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 in reply to sashaming1]

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

[sashaming1]

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

[kdali]

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

[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]

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 in reply to Msstinks]

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]

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 in reply to anaishunter]

Let us know how it goes.

[IFwczs in reply to anaishunter]

Thank you, please keep us posted!

[Bodega1939 in reply to anaishunter]

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]

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 in reply to MarkUpnorth]

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]

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 in reply to MarkUpnorth]

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.