@Krista 

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Krista

Amantadine/Ocrevus 1st 1/2 dose

In October 2019, after a year battle of back and forth to many specialists and countless tests and MRIs, I was finally confirmed a diagnosis of RRMS. I have many symptoms for example numbness in my left leg and numbness/burning in pelvic region. My vision is blurred and see tracers and colour spots. I have numbness in my face and neck spasms. I experience raynuads phenomenon often. I often get spells of itchy skin that comes and goes. I also experience extreme fatigue. These are some of the many different symptoms that come and go for me. I was advised to take Amantadine for my fatigue however after 2 days I stopped as it made my fatigue worse along with dizziness. Yesterday I received my first 1/2 does of Ocrevus. I am set for the second 1/2 does on Feb 19th. The infusion went well. I tolerated it quite good with minor throat irritation and some pressure in my head. Afterwords I felt headache which Advil took away. They administer Tylenol and Benadryl along with steroids before the actual Ocrevus starts to infuse. I did feel a bit dizzy after but also felt I had a lot energy most likely due to the steroids. I slept well and feel a little dizzy this morning, but overall I feel good. I am just wondering if anyone has experience with Ocrevus and if side effects get worse with second does or when the time comes for a full does? Has anyone had issue with be immunosuppressed and contracting viruses after taking Ocrevus? Also does anyone else have experience with taking Amantadine for fatigue? Does it have to be in your system for a while before you start feeling less tired? Has anyone had bad side effects with the Amantadine? Thanks in advance for any comments!
@Mlgilber1

I felt like crap for a couple months after my two half doses of Ocrevus, but some people have a flare of symptoms after their first infusion. Then, I felt better than before I had started and it’s improved some of my symptoms. I haven’t even needed to use my walker since a couple months after starting. The flare up of symptoms hasn’t happened again after the other infusions, but I will feel a little crappy after the steroid has worn off for about a week. I’ll get weak and dizzy and just feel run down. I’ve actually been sick less since starting Ocrevus, but I did get a UTI and shingles following my first two half doses. I will feel more fatigue and weaker about a month of two prior to each infusion which most people call the “crap gap.” It’s been getting better and shorter over time. I have my third full dose in a couple months and don’t feel that bad. Not everyone experiences it. Overall I’ve been improving on the med and haven’t had any new or active lesions since starting. I was put on amantadine for fatigue and it worked pretty well, but gave me severe dry mouth and I’ve already had a bunch of dental problems in the past from dry mouth due to a medication so my neurologist switched me to adderall which is working really well. I even sleep better at night on the days I take it. I’d say give the amantadine a little bit of time, but then ask for something else if it isn’t working well. I’m not sure if it has to build up in your system first... I think it worked right away for me. Good luck!

@Krista

mlgilber1 Thank you for your response. I appreciate you sharing your experience with both Ocrevus and Amantadine. It is good to know that you have been feeling good while taking the Ocrevus, and I might try the Amantadine one more time, and if I still find it makes me tired and dizzy, I am going to ask for adderall. That is an excellent suggestion. Sometimes doctor’s don’t always offer all options so I am glad you mentioned the adderall. Hopefully your crap gap will continue to get smaller and perhaps even nine existence. Seeming I have only taken the one 1/2 does so far I can’t really speak on behalf of how this treatment will be for me, however it is comforting to hear positive things about it!! Wish you all the best!!! Cheers! :)