Is it just the MS or Ocrevus?

[SpazQueen]

Hi y’all. I’m new here, but not new to MS. I was diagnosed with this fun disease in 1999. I guess you can call me a veteran? Regardless... For those of you on Ocrevus, are you more fatigued than before starting treatment? I started infusions in July of 2017 and I’m wondering if the increased fatigue ALL THE TIME is a side effect. My neuro tells me that it’s just the MS, but before Ocrevus I had more energy. Anyone? Thanks xx

[Jesmcd2 CommunityAmbassador]

Hi SpazQueen and welcome! I'm not on Ocrevus myself so I have no clue. But I'm sure someone here will answer you soon.

I had extreme fatigue upon my first symptoms, and my Dr put me on Modnifili. Are you on anything like that?

Jump in anywhere! 🤗💕

J💖

[Fancy1959]

Welcome to our chat room,SpazQueen! We are glad you found this chat room. We promise to provide you a safe place to come and ask questions, voice concerns, or simply speak to others who understand what you're going through because they're also going through it. First key thing to remember is and this is totally different for each and every person who has the fun of living with this monster! I would have to side with your nurse because we are not doctors for medical professionals in this chat room we just offer similar experiences that you can compare your experiences against. I've been on ocrevus for about a year-and-a-half and I've not noticed any increased fatigue while on ocrevus. This is been a rough winter hat however and I blame a lot of it on the extremely wet cloudy blah days were having. That lack of sunshine and brightness affects us all, or at least me, more than I can ever realize. Ocrevus this has helped me on several fronts

Severe and chronic fatigue is one of the signature issues at most of us with Ms deal with at some time or another. Is the disease progresses and is my age Progressive I noticed my fatigue is getting worse as well. It's hard to say whether I blame it on my age to some degree or totally on Ms but I noticed my husband who is a mess free also seem to be experiencing more Petit as we age. That's a normal part of the aging process. I don't know what your age is so it might not be a factor at all for you but it is something to think about. Glad to meet you and can't wait to get to know you better. Until we speak again please take care and remember that together we are stronger. Fancy.

[chickadee59 in reply to Fancy1959]

Fancy, going by your screen name we are of the same age group. Celebrated 60 yrs Young Jan 12. I also saw that you are currently on OCREVUS. June will be 1 yr on treatment and I could not be happier. Does not mean everything is just peachy but since I too am Secondary Progressive my goal was to remain stable ya know?

Kelly

[carolek572 CommunityAmbassador]

Hello SpazQueen Welcome to this forum! No, I have quite the opposite effect since being on Ocrevus, but everyone has a different experience with 'ms', and Ocrevus. I do remember a few posts mentioning fatigue being worse while on Ocrevus, though. You might find these posts if you use the Search word in the toolbar above.

Keep Smiling,

Carole

[dubois925]

I had my 1st infusion in December 2018 and yes I’m way more fatigued all the time

[Snapdraggin]

Hey. I’ve been taking Ocrevus sine 4/18 and I’m experiencing more overall fatigue and difficulty gaining overall strength and stamina back.

[Wizardsmom]

Hi SpazQueen and welcome....I have been on Ocrevus for almost a year and have not noticed any increased fatigue. In fact, I feel the most "normal" I have ever felt since having MS.

I hope you feel better and can come up with a reason for your fatigue, Ocrevus, MS, or what. Take care!

[232323]

All I know is my new neuro stopped my from taking Tysabri, because I have PML, to start taking Ocrevis (I wanted to stay on Tysabri).

During the switch time and my time on Ocrevis, I went from bad to WORSE and went to a different neuro to get back on Tysabri.

[Raingrrl]

Hi SpazQueen ! I was diagnosed in 1999 as well! I’ve been on Copaxone, Tysabri and now Ocrevus. I’ve had 3 doses of Ocrevus and feel no different than when I was on Tysabri for 5 years. Fatigue has always been one of my worst symptoms but is no different on Ocrevus.

And like Fancy1959 mentioned, there are always non-ms factors that can kick up symptoms. Whenever my symptoms are more present I have to ask myself is it an aging thing, is it post menopause female, did I sleep well the night before, am I stressed out about something or is MS rearing it’s head? The answer I usually come to is “who the heck knows?” 🤔

[SpazQueen]

Thanks everyone! I know MS is different with everyone thus medications will react differently. I was diagnosed with PPMS from the start because it hit me HARD. Nothing helped and honestly, I’m wondering if Ocrevus is helping me. But we all know MS is one crazy, frustrating disease and a lot of times we just have to make that lemonade. 🥰🤗

[DisMLEVal]

I have had 2 half doses and 1 full dose of Ocrevus beginning July 2018, and my fatigue has increased ever since. However, I have had my first MRI with no new lesions since beginning the treatments. I was expecting it to take much longer.

[SpazQueen in reply to DisMLEVal]

I am assuming I don’t have any new lesions, but what else is in the MRI? My neuro tells me “no significant changes”, but what does that mean? 🤦🏻‍♀️😂

[CalfeeChick CommunityAmbassador]

Hello and Welcome to our forum. You ask an interesting question and I'm sure you will get many answers. I am on supplemental meds only, Bacolfen, Gabapentin and Modafinil. The last on is for the extreme fatigue because of MS. How long have you been on the Ocrevus? If the time is short, maybe you've been doing too much, too soon. check with your Neuro and possibly you might need something like the Modafinil for a little extra energy. Again welcome to the group, please feel free to join in posts, questions and comments. Check out MSAA as there is a treasure of information there!!

[IFwczs]

I have progressive MS and have been on Ocrevus since August 2018. I have had more energy, less fatigue and no cog fog since I've been on it. Went out yesterday to eat after a full day of work and a haircut. Would not have happened a year ago. I was really fatigued yesterday but sat down fir a haircut and got a second wind.