Provigil and Other Off-Label Medications Used To Treat MS

Thank so much for your post Doctor.  This is really eye-opening to me;  I did not realize that medication used "Off-Label" were so regulated by insurance companies.  But I guess many things that have to do with medical insurance are complicated.

I hope you have great success with your grant and we look forward to hearng back from you on how your research is going.

Read our section on Medication and Drug Information to learn more about the different options for treating MS. 

All the Best, sue (moderator) 

This is a wonderful article talking about off label meds for MS Fatigue.  I have been dealing with MS since 4/94.  I suffer fron both physical as well as cognitive fatigue.  I am currently taking Ritalin 20 mgs @ 6A, 1030A & 3P.  This burns off the fog that would normally creep in from my MS.  I can only take the white pills of generic Ritalin (Methyln) as the ones with coloring do on have the same effect.  I have several food allergies that I attribute this to.

I am been taking this since they pulled Cylert off the market 4/05.  I started Cylert back in 7/96 with the same results.  Before I started either of these, 2+2 did not make 4.  It would make 3, 5 or even 22 where I could get 2 and 2 together but not actually do anything.  I could not take part in a 3 way conversation as by the time I came up with a response to a statement someone said, they would already be on a different subject. 

I am under the care of Dr. Steven Schwid of the Rochester, NY MS Care Center for the past 10 years.  He has been a tremendous help to me to allow me to try new things or areas that other folks would not look to try.  Before I started with Dr. Schwid, please note, I was being seen by Dr. Aaron Miller who is now the Chief Medical Officer of the NMSS.  His nurse, Nurse Linda Morgante did a little research and had found a study done in Texas looking at Cylert for MS Fatigue.  It took me 2 years of trying to convince Dr. Miller to let me try this.  I have had tremendous success with these meds. 

I am wondering why no one is looking at Ritalin for MS cognitive fatigue.  It is sometimes listed on the national site but quickly gets taken off when someone points this out to them.

A few links to reputable sites that also talk to the effects of Ritalin on MS cognitive fatigue are as follows:

Take, for example, the NMSS Momentum Winter 2007 issue that has a small section in an article on page 70 that states: 
 
My doctor prescribed a drug most often used for Alzheimer's patients, but when it gave me amazing night terrors, she suggested Ritalin, which has enabled me, like people with Attention Deficit Disorder, to focus on the bank statement, dinner, or our holiday newsletter for a few hours. Books, even my growing pile of New Yorkers, now have to wait for vacations, when there are no ringing telephones, burning cookies, or children's homework questions to distract me. 
 
www.nationalmssociety.org/download.aspx?id=9 
 
Also, the Mellon Center at the Cleveland Clinic specifically states on the symptom management page: 
 
Pediatric Multiple Sclerosis (MS) - Symptom Management Cognitive problems Some patients with MS find that they have cog 
nitive problems. This may range from the nuisance of not being able to remember names or ‘where you put things' to more severe problems with organizing your day or being able to function at work or at home. This may occur independently of depression and tends to be more common after years of MS. While there are no specific treatment for this, there are a number of things that can be done to combat this. 
 
At the Mellen center we would evaluate the cognitive problem, and consider testing such as neuropsychological measurement to fully evaluate the cognitive problem. We would review the medications that the patients is on to make sure that they are not causing some component of the cognitive problem. We will often suggest that people write things down, and try to simplify their day to day activities. It is a good idea to have one place to put things and try to be consistent when putting things away. We will assess sleep, pain, and depression, all of which may negatively affecting the ability to focus and remember things. If necessary, we may consider trials of medications such as donepezil (Aricept), or memantine (Namenda) in memory disorder related to MS. Both of these medications have been shown to improve measures of cognition in small trials in MS. 
 
On occasion for trouble with inattention or distractability we might consider Ritalin, Adderal, Concerta; all of these medications need to be cl 
osely monitored for safety. 
 
Occasional patients have trouble controlling their emotions. They may begin crying or laughing suddenly and inappropriately. This is a problem with the reflexes of emotion, not necessarily related to the person's mood at the time. A low dose of a tricyclic antidepressant may be beneficial for this symptom (known as involuntary emotional expression disorder, or IEED). A recent medication (Neurodex) has been shown to be effective for this disorder but is not yet FDA approved. 
 
Patients in the pediatric age group not only have to deal with their MS disease course, but also with the issues of growth and maturity, schooling, and peer relationships. A careful analysis of how the child with MS is doing at home and at school is key to understanding any cognitive issues that might occur. 
 
http://cms.clevelandclinic.org/neuroscience/body.cfm?id=1796 
 
On staff at the Mellen Center for MS is Deborah Miller, Ph.D. She is also the Committee Chair for the NMSS Editorial Advisory Board, I am wondering if they posted this information on Ritalin, Adderal, Concerta without studying and testing the medication results on their external website for anyone to view. 
 
Here is an NMSS white paper mentioning Ritalin for cognitive fatigue 
http://main.nationalmssociety.org/docs/HOM/Expert_Fatigue.pdf 
 
Canada MS Society Fatigue Brochure - Page 38 talks about Ritalin for fatigue 
www.mssociety.ca/en/pdf/livingWell.pdf 

Any questions or comment, please don't hesitate to reach out to talk / type.

Ben E.

I think that this is great. MS is so different for everyone.  My biggest problem with MS is the fatique.  There are always trials going on but never in my area which really suck.  I live in NC in the Triad area, and there are never any MS trials going on.  I participated in only 1 since I have been DX with MS and that was with Beta.  I would have loved to do the one with the new MS drug up for FDA approval in 09.  But hey in the in everyone wins and that is what is most important. 

Thank  you for your post.  I read many articles about MS Fatigue but very little about what, if any, medications are effective in treating this.  I have several issues I am dealing with besides MS. I have had four major spinal surgeries and live with chronic pain, which has been managed pretty well by an intrathecal morphine pump since 2000, but I still have breakthrough pain which effects my sleep at times. Plus, I have severe obstructive sleep apnea, for which I use a CPAP machine, which is attached to an additional oxygen tank.  As a result I am not sure what impacts my daytime fatigue the most, however the MS aspect is very different than regular fatigue.  My whole body feels tingly, which is the best word I can come up with but doesn't adequately describe the sensation I feel.  I cannot function and often fall asleep while sitting having my morning tea.

For the past several years I have been taking Methylin, the generic for Ritalin and Straterra in the morning for MS fatigue and about 30-45 minutes after I take it I can actually feel a major difference in my physical and cognitive level of functioning.  If for some reason I don't have the medicine, specifically the Methylin, I am useless for the day. I don't know exactly how it works, but my doctor told me that while Ritalin works to calm children down and help them focus, with adults it has a stimulating effect.  The Straterra works to enhance the effect. 

I am pleased to know that some research is being done on this pervasive symptom that affects everyone I know with MS.  While other symptoms affect people with MS on an individual basis, fatigue is the one symptom I know that seems universal to all the people I know or have heard of with MS.  I know that sometimes just getting my body to function well enough to get through the day is an exhausting process, but the fatigue I am writing of here is one that I wake up with and as the meds wear off starts to return through the afternoon, making it difficult for me to participate in many meetings or activities in the late afternoon or evening.  

Thank you again for bringing attention to this important issue to so many people and good luck with your research. 

For any MSer out there with twenty-seven years of living with this beast who find Provigil the only drug to give them a decent 10 hour day, no one, the FDA, the American Neurologists Review Board, the NMSS, has any reliable way of determining whether this drug, or any other, is effective. I fought hard for the ability to have Provigil paid for by insurance because without it, I would be in bed 24/7. That would surely curtail my lifespan and create quite the lawsuit. So, please let active MS patients have access to what works for them, as opposed to looking only at double-blind scientific studies. Beta-seron and Copaxone nearly killed me, but Rebif is agreeing with my body. Go figure...not all one reads is as it seems.

For any MSer out there with twenty-seven years of living with this beast who find Provigil the only drug to give them a decent 10 hour day, no one, the FDA, the American Neurologists Review Board, the NMSS, has any reliable way of determining whether this drug, or any other, is effective. I fought hard for the ability to have Provigil paid for by insurance because without it, I would be in bed 24/7. That would surely curtail my lifespan and create quite the lawsuit. So, please let active MS patients have access to what works for them, as opposed to looking only at double-blind scientific studies. Beta-seron and Copaxone nearly killed me, but Rebif is agreeing with my body. Go figure...not all one reads is as it seems.

LDN still seems the most effective drug to me for MS