Hi, I have a diagnosis of RRMS with an EDSS of 6, but it’s probably RPMS, and I’m on Natalizumab, which seems to have halted any further remissions, and Gabapentin for neuropathic pain. So after lots of “discussion” with my previous GP (involved quoting NICE guidelines), I was finally prescribed Amantadine for fatigue. Roll on 2 years and I have an appointment with a Neurologist where I mention that the Amantadine doesn’t seem to helping with the Brain Fog and I’m falling asleep as soon as I get home from work, he suggested I try Modafinil instead. I take 100mg at 6am that works brilliantly, I no longer get the mental fatigue, but since stopping the Amantadine my walking ability has deteriorated by 50 to 90%. It seems that the Modafinil works best against the mental fatigue and the Amantadine against the physical fatigue, with different biochemistry involved. Knowing that they are both “off label” prescriptions I checked with a pharmacist that there are no issues with taking both together and then via my MS Nurse requested that I be allowed to take both. After consulting with the head neurologist she came back with the reply that I can have one or the other, but not both, no other reason or explanation. Now my question is has anyone had any experience of taking both together? and does anyone have any suggestions as to how I might possibly try to change my neurologists mind before I lose my full time job?
Hi 4ecks, welcome to the forum
I thought the reason they said no would probably be because of how the two drugs interact together. So I tried a quick google search, and sure enough I found page saying they should never be taken together because of a high risk of dangerous interaction.
So unfortunately it’s a case of one or the other. Regarding your job, I’d speak to HR or your boss at your work, to discuss possible adaptations that could be made to help. Also, get in touch with Access to Work. It’s a DWP thing to help people with disabilities to stay in work.
Dan
Update After robust discussions and negotiation with my Neurologist, and getting him to confirm with the hospital Pharmacist that there are no major contraindications, I am now successfully taking both.
My walking and physical stamina improved significantly after only a couple of days of Amantadine, and I only need 50mg(half a tablet) of Modafinil to keep me awake during the day.
This isn’t going to work for everyone, but the combination of the two drugs, which have different biochemical actions seems to be working for me.
See NICE guideline NG220, section 1.5.14, and associated links to the BNF & MHRA sites.
The Amantadine seems to target the physical fatigue, hence it’s use in Parkinson’s, where the Modafinil deals with the mental fatigue (brain fog).
fantastic posts . thank you. we need ways to manage/overcome fatigue.
what is your thinking on caffeine?; are you using? thanks