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-   -   Meds for Fatigue! (https://www.neurotalk.org/multiple-sclerosis/41982-meds-fatigue.html)

RedPenguins 03-24-2008 01:45 PM

Meds for Fatigue!
 
Last month I posted about a new med that I was trying for fatigue.

It is an ADD med that is also used (off label) for narcolepsy. So, seeing that some of the meds currently used for fatigue in MS patients are ADD meds or for narcolopsy, I brought it to the attention of my neurologist. (My psychiatrist told me about it!)

It is called DAYTRANA - and it is a patch - not a pill.

Well, I wasn't sure if it was working - I had horrible fatigue and am in the middle of a long exacerbation (over 3 months now).

I've been using it for a month now - and last Wednesday my housekeeper accidentally threw away my patches! :eek: I called the pharmacy as I had a refill - but they don't keep it in stock as it's relatively new and many people don't use it right now. (Thing is - the "med" itself is not new and has been used for a very long time - but the patch form is new).
Anyhow, they had to order it - and they are first getting it in today!! Yay.

So...........starting last Thursday I didnt have a patch to wear - and all throughout the weekend.

OMG - I was SOOOOOOO tired - the fatigue was out of control!! I really didn't think or know if the patch did that much - and I'm not even on the highest dose (mind you, the patch is made for children!!).

The one upside is that the extra sleep was probably good for me (I napped and slept all weekend). However, needing to be able to function during the day is important and I can't spend every day in bed.

I have had NO side effects from the patch. I had tried provigil and was using 400mg a day and it wasn't helping me. In fact, I think it made me tired. LOL :confused:

I am so glad that I will be picking up my next box of patches today....and not a moment too soon.

I wanted to share this information with you since apparently it has worked wonders for me. Also, if you go to their website, you can print a coupon for a free month (with prescription - you just bring to pharmacy).

~Keri

Erin524 03-24-2008 02:24 PM

How did the housekeeper accidentally throw away the patches??? Where did you keep it?

braingonebad 03-24-2008 03:34 PM

Erin, I wondered that too.

But hey, glad you got more and that they are helping. I should ask my neuro about them.

momXseven 03-24-2008 03:39 PM

Thanks for posting, I just looked the drug up and saw it's RXed for ADHD, my 9 year old is ADHD and we have tried almost all the meds (none have worked well) but hadn't heard of daytrana so I'll be talking to his Dr soon about this.

Thanks again. :)

lady_express_44 03-24-2008 03:51 PM

Hi Keri,

I've heard of others that have been successful on Ritalin too. Funny how those drugs slow down ADD, but pep us up, eh?

It MAY alternatively (or also) be that you went through some withdrawals when you went cold-turkey off the patch . . .

Glad you found something that seems to be working though.

Cheriw

momXseven 03-24-2008 03:58 PM

Quote:

Originally Posted by lady_express_44 (Post 243739)
Hi Keri,

I've heard of others that have been successful on Ritalin too. Funny how those drugs slow down ADD, but pep us up, eh?


Cheriw


The same is true for caffeine, it peps most people up but if you have ADD/ADHD it clams you down.
I have ADD and when I got the caffeine IV (500mg of caffeine) after my LP I came right home and sleep all night, it made me SO sleeping I was ready to doze off in the car on the way home and we were only 5 minutes away and it wasn't even 9pm yet.
I even like to take my night time pills with a Dr. Pepper. :D

RedPenguins 03-24-2008 04:11 PM

LOL - my housekeeper throwing them away -

I only have about 5 patches left....and the box was so huge - so I took them out of the box and left them on the counter next to all my other meds. Thing is - they are about the size of a post-it note - and VERY thin - like a post-it!

I don't think it was withdrawal, Cherie, but you never know. Either way, I want to get back on them. I imagine if it was w/drawal - it wouldn't feel (I wouldn't feel) exactly as I did before I started using them. I would think the symptoms would be slightly different. But who knows!

Yeah, it is amazing that people who struggle with ADD use a stimulant to calm them down.

~Keri

tovaxin_lab_rat 03-24-2008 05:20 PM

Keri

Thanks for that information! Housekeepers...I've had mine (the previous ones!) throw things out too and just want to scream! I love the one I have now..;)

I take between 300-400 mg of Provigil and day and sometimes skip weekends if I have nothing planned. I see no purpose in taking a medication if I am just going to do nothing!

Since I am in a clinical trial, I cannot mess with my meds without permission, but I am going to ask the neuro in charge about this one. The trial ends next Tuesday and maybe we can do some adjusting! ;)

Erin524 03-24-2008 05:23 PM

Quote:

Originally Posted by RedPenguins (Post 243756)
LOL - my housekeeper throwing them away -

I only have about 5 patches left....and the box was so huge - so I took them out of the box and left them on the counter next to all my other meds. Thing is - they are about the size of a post-it note - and VERY thin - like a post-it!

I don't think it was withdrawal, Cherie, but you never know. Either way, I want to get back on them. I imagine if it was w/drawal - it wouldn't feel (I wouldn't feel) exactly as I did before I started using them. I would think the symptoms would be slightly different. But who knows!

Yeah, it is amazing that people who struggle with ADD use a stimulant to calm them down.

~Keri


My mom had some sort of medication patch a few years ago. My dad put them in an old prescription bottle (label removed) and wrote the name on the med on the bottle with a Sharpie marker. Kept it with their rather impressively large collection of medications.


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