I started Ocrevus at the end of May 1st ½ injection and 2ns early June. My fatigue has gotten butter but my new normal had me passing out at 9 not able to help put the kids to bed and feeling like 8/9 hours asleep was never enough. This turned into a lack of focus and more fatigue and experimentation with some caffeine tablets (I barely drink soda/no coffee). I did that twice and that just made sleep wise but my focus amazing! But you can’t live like that so neuro started me on amantadine and I’ve had some of the worst headaches daily. She says they go away after a while but what died that mean?!?! I found I have to take the 2nd dose by 3pm or I can’t sleep. It was 9am/9pm for my twice a day but I had to adjust he second or sleep was really difficult. Searched the forum and didn’t see much about amantadine that’s current.
Anyone else out there dealing with this? I just want to sleep, FOCUS when I’m awake and feel good in those waking hours.
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JMWCO
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I was taking it for a while. I didn’t have headaches with it, but the other drugs for fatigue gave me migraines. I do know what you mean. My MD told me to take the second dose by noon. It did help for a while but it didn’t do what I needed it to, even with caffeine.
That's where i'm flustered. I wrote my neuro asking if i should just take it 1x a day instead of twice. I haven't gotten a response yet..but seriously... i'm not sure if this is helping if i'm doing OK without it just crashing out by 9... it's not a bad thing to crash by 9.. i just can't stay focused the next day cause I just feel warn/fatigued.
When you were on it did you notice any improvements??
I did! I went from being too exhausted to do anything beyond keep my 4 month old baby clean, fed and safe, to being able to think in the morning, do laundry if I started it early enough and shop/cook a few meals per week. If it was a really good day, we could walk around the lake. Very depressing, it was like after having her, my fatigue and cog fog was on fast forward.
I had weird foot pain in the morning and thought it was baby weight, so I did the keto diet to lose 10lbs and help me get back to light jogging. I started forgetting to take the afternoon dose because I had so much energy that I didn’t need it, and I told my MD that. It’s been a month since I’ve taken any and probably 2 or 3 since I’ve needed to take any. I still have my caffeine in the morning, but it’s less than it use to be, and a that’s work in progress.
I'm hoping to figure out if i need it or not. The fatigue isn't bad before teh amantadine aside from needing naps/going to bed early and relying on my husband to help more with the kids.
I was hoping that the amantadine would help with the fatigue and give me some focus. According to my "cognitive tests" i should have no issues but as the dr. said they are in a controlled environment which isn't real life.
Having kids, work and personal obligations changes how much time you can devote to everything. I find that I was 'tired' cause my life was 'tiring' which is why small MS signs were missed until the major relapse that led to the diagnosis. I just want to be able to wake up, feel energized enough to do daily tasks, play with my kids and get maybe 1 PROJECT off my to do list and I would think that's a win!
Just projects/work doesn't always give you more time. I think it would be easier if i had less obligations (working on it) and could just sit and say I can FOCUS on this for the next 60 minutes and take a break. I just find there are days where focusing for 5 or having the energy for 5 can be a challenge. On the good days, I get lots done and can do a lot and for that i'm grateful - it just isn't daily and I can't expect it to happen even when I want it.
Sorry mini rant. For the most part I am doing well (80% of the time).. i just want to keep scratching things off the list and know that when I wake up i'll do more than just feel like falling asleep. Again, those days are not daily but when they do happen... i feel like I blink and the day is gone and find myself saying 'what did i do today' and I find that time is valuable and I don't like feeling like it's sand through the fingers.
I think if i just had some basic work, personal projects like the groceries and taking care of the kids - id be good. I KNOW i have more thank I should on my plate but all that continues to change as the year continues... more things drop off and I'M NOT REPLACING ANY OF THEM....LOL.
Thanks KDali. Here's to another good day for you and all the perks of 6th month crazy infusions! Enjoy the little one - they truly do grow up TOO FAST.
No need for the apology, I get it! When I did go to work, no one noticed how different I was or how much I was struggling. I probably wouldn’t have failed any real tests either. I’m glad that I found something to give me my life back, and that’s my hope for you. Keep looking, it might be a combo of things that you just have not tried yet. It’s hard to explain simply wanting to be engaged with your own life to someone who has never had that taken from them long term. To have it back?! No words. 😍🎉🙌🏻☀️
JMWCO, it's Fancy1959. In October I will receive my second full dose of ocrevus so that will be my one year anniversary of being on ocrevus. I am have never been on Amandatine so I am really not very much help to you with this question. I do not find my fatigue any worse and it seems as if my muscle spasticity is getting a little bit better with each infusion.
Anything that would give me migraine type headaches I would certainly talk to my doctor about and probably asked if I could get a different medicine or get off of it totally. I just not into severe headaches. We have enough other issues to deal with then to bring our heads functioning at very low norm with a migraine.😲😩
That’s why I asked about reducing the dose to once a day but no reply yet.
The pharmacist pamphlet had big bold letters DO NOT ABRUPTLY STOP TAKING. So now that I’ve been on it 2xday even with the headaches. So I’m waiting for them to advise. Waiting...waiting...more headaches 🤪
I tried amantadine and provigil. Both kept me awake at night. I do better with more sleep. Now I just use coffee. I've heard of others that have good luck with Ritalin. Wishing you good sleep and more energy!
Thanks! I’m hopeful as things keep changing and I’m further in my Ocrevus dosing it’ll keep getting better as everyone on the forum predominantly tend to have good reactions the longer they are on it.
As many of us have mentioned, myself included, 90 days is the min for results but a year+ is better.
In six months in on O. First dose I felt excellent for two weeks then crappy for one month. Same thing with full dose. In in my month of crappy and hoping that it ends soon. Any positive results for you?
I also take amantadine, my dr said 1 when awakening( I get up at 7am) and 1 at noon.I didn't have headaches and it works for me but a side effect is itching, he cut me back to one a day,which took away the itching but I do feel more fatigue again. Still looking for the answer pam
I was given Modafinil (generic for Provogil). My neuro said it was an energy pill (not) but it does help me focus. I take it in the morning but can easily nap/sleep.
Just had my second full dose of Ocrevus. I do not believe the Ocrevus causes me any additional fatigue. I am taking both provigil, 200mg, 2 per day and 1 amantadine, 100mg and fatigue is still an issue. Have not seen 9PM for months and that is with naps during the day.
I found out today my insurance doesn't find value in occupational therapy - who else is going to give me tips on energy conservation, effective exercises for MS and more? Well yes - this forum and MS Websites..but it is nice to have the added guidance from someone that specializes in this.
I myself took this drug had headache but no help with fatigue. I still have nothing to help with that at all. I want to sleep all the time.... I am still looking for something to help the fatigue. But I also think I am having the feeling of just saying screw it and just sleep and let MS do what it does..😞😞😞😞
That sounds horrible. I finally had someone explain that the headaches are like those that have daily coffee and go through withdrawl and get headaches. In this case it is building up the tolerance to the drug and have been asked to keep it up for another few weeks but reduce the dosage to help with the sleep issues. I'm going to give that ago.
One things I tried in the mist of all of this was the 'army caffeine dosing' as there as an article for the wall street journal and was based on the following: ncbi.nlm.nih.gov/pmc/articl...
Ultimately, you take 100 mg when you wake up and then 4 hours later another 100mg or what you need based on your level of sleep. I was sprung out of my head as I barely drink soda (i'm a 4-6 oz as needed for a pick me up) so it was a lot for me.
I have only been on Amantadine for about 2 weeks. My neurologist has just changed me from Tecfidera to a new drug, Mayzent. he explained that the Mayzent reacts adversely with the Modafini I am taking for improved energy. It speeds up the absorption of the Mayzent by about twice. This makes the Mayzent less effective.
I do not feel as if it works nearly as well as Modafinil, but I have to remember, it's only been 2 weeks. I know I have been forcing myself to do more, and a million times a day I feel I HAVE to sit down. I don't sit down tho, I keep going. Your imitations may be much more severe than mine, so we really can't compare, but if possible, talk to your doctor and ask about switching to Provigil or one of its generics. Modafinil was the one I was taking - I call it "the Poor Man's" Provigil.
So talk to your doctor and assert yourself. Sometimes We forget to tell them everything, or they're not listening, perhaps because we are not clear enough, or insistent enough or just plain don't make ourselves clear. If he won't change you to a more effective med, ask WHY. There may be a perfectly good medical reason. Maybe you could find a comprise.
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Weird symptom...anyone else get this.
Anybody else deal with this?
Anyone else have this?
