Last reply 1 month ago
Six months after Dx

Just diagnosed in February/March of this year & it feels like a downhill slide. I started Tecfidera shortly after dx. So far I’ve had two rounds of Solu Medrol infusions & about to start my third round for 5 days next week. I’m having another MRI Friday – I just don’t think Tecfidera is working for me…I’m exhausted all the time. All I want to do is sleep. I constantly have new symptoms. This week my hands & fingers are itching like crazy! Saw my neurologist today & he prescribed Provigil. Has anyone had good results with this drug for fatigue & cog fog?

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nutshell88
1 month ago

itchimg nness butning may accure anytime with MS despite what drig you’re on its from MS itself
might last days hours months or lifetime
tec didnt suit me
but it was helpful for otherand i’ve had solu medrol years ago a very effective drig not huge different from any corticosteroid drug

best thing to do is never pay attention to the crawling feeling sleep or distract yourself with anything squeeze smell baseball ball do simple ghings like that


nutshell88
1 month ago

_numbness burning*


stumbler
1 month ago

@rmdaniels , primarily, only two rounds of Steroids are recommended per annum. I don’t know when your first round was, but it’s something to bear in mind.

The MRI will let you know whether the Tecfidera is working medically. But if it’s having such an adverse impact on your quality of life, then you need to discuss changing it on that basis alone.

Provigil, aka Modafinil, is popular amongst undergraduates. It allows them to party hard and then allows them to function the next day. So, it should help for the exhaustion, but do you really want another tablet?


rmdaniels
1 month ago

@nutshell88 @stumbler
Thank you for the tips & info! I guess I just didn’t expect to be progressing with new symptoms so soon. I had so many people say they were fine for years after their first relapse or event. I honestly thought things would go back to mostly normal after I started taking Tecfidera. Maybe I just need to adjust my expectations. 😕 I’m really hoping Provigil will help me feel like working…I’m still full time & travel sometimes with my job. Other than that I rarely leave the house because I’m so tired all the time. I’m just struggling right now I guess.


laurianne25
1 month ago

Hi @rmdaniels!
You and I were dx around the same time. I dont have any experience on Tecfidera, I started Copaxone in June. I haven’t had any more relapses since the first one, I’m just always tired and dont walk as well as I used to, I use a cane often. I see my Neurologist next week for my follow up.
I hope you have good luck at your appointment, and no new lesions!


nutshell88
1 month ago

well I was fine for three years
i was slow on stairs at highschiol
but never thought it was related to optic neuritis no one told me anything about MS
ive never heard about it neither my family before my daignosis
i was actually the latest student going up or down
but when i realised the issue by yahoo answers
i requested treatment then i got relapses monthly sovi stopped it once i stopped itvrelapses became yearly or less


nutshell88
1 month ago

excuse my poor English
I’m Saudi Arabian
I’ve had been learning English in the uk 9 years after diagnosis.
graduated high school and uni after diagnosis in Saudi before that.

life mustn’t stop

@rmdaniels. I used to take Provigil. It worked fairly well for a while. Nuvigil is also an option, I hear it works better.
I take immediate release Adderall now as I don’t digest extended release pills well. I would never do anything but be in bed if it wasn’t for anti fatigue medication. Totally worth taking small amounts up to 8x a day as the ER doesn’t work for me!!! If I am vegging at home I don’t take it as with this type of drug including provigil, you build up an immunity and will need more and more to get the same results. Took a long time with me.
Best of luck MS fatigue is awful!!!


merfield
1 month ago

@nutshell88, you do very well with yr English, better than any of us can speak or write Arabic!
Are you ok? xx


merfield
1 month ago

@rmdaniels, I get sooo fatiueed sometimes I just have to put my head down and sleep, wherever I am. As to getting worse – my ms friend who was DXed way before me is still working and walking. I can do neither. We are all different and some of us pulled shorter straws unfortunately. xx


rmdaniels
1 month ago

@nutshell88 I agree with @merfield. You do very well with your English! You were so young when diagnosed. That makes me sad, but you have a fighting spirit that I hope to be like!
Thank you @laurianne25, have you been surprised at how quickly you’ve progressed? I’m so glad you haven’t had any relapses. I hope things will continue to be stable for you too.
@joanna_lathrop_haag_soluri Thank you for sharing your experience with Provigil. I’m hoping for good results like yours. Did u have any side effects? Sounds like you have a good neurologist who works with you. I’ll be careful about using it just when I need it, thanks for that tip!
@merfield Nothing sounds more comforting to me that a big soft recliner and a nap, lol. I think we were both older at diagnosis & I wonder if progressing more quickly is more likely because of that. I hope I can stay positive like so many of you on this site that inspire me- @vixen @highlander @stumbler @dominics @rogersouthall and many more!

@rmdaniels, don’t be afraid to break them in half and space out taking them. I found 1/2 lasted nearly as long as a whole pill and worked just the same. No side effects. Just don’t take any too late in the day lol. Also, dont be afraid to use it when you need it either. Does no good just sitting there. =)
I hope it works well for you. Just know if it doesn’t, there are a lot of other options.

Yes, my neuro is GREAT!

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