Last reply 3 months ago
Ocrevus

Hey everyone! After a bad relapse my MS specialist and I decided to do Ocrevus (was on Tecfidera) and I was just wondering if anyone has tried it or knows someone who has and what their experience with it was like. Also, they are doing further specialty blood tests (even though my first blood test came back negative) to see if I have Neuromyelitis Optica (NMO/ Devics disease) in addition to the MS because one of my lesions was really big and the amount of pain I’m in all the time is more consistent with NMO. Also, they suspect NMO because the steroids don’t help me, but plasmapheresis does. Does anyone have any knowledge on NMO, I haven’t found a lot. Thank you all so much and have a wonderful day!

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stumbler
4 months ago

@mlgilber1 , it’s at times like this that being enigmatic is not a positive! 😕

But, you’re right, there isn’t a lot of information available about NMO. Well not any user forums that I could find.

I did find this page from our NHS, which I hope may prove useful :-

http://www.nmouk.nhs.uk/resources-useful-links

I wish you good luck with the Ocrevus. This is a relatively new treatment, so there’s not many comments about it. An Ocrevus link has been added above at the foot of your post. Select this link to access previous posts, which refer to Ocrevus.


mlgilber1
4 months ago

@stumbler Thank you so much, I appreciate it!


leighlincoln
3 months ago

I came off Tecfedira had a month washout then went on to Ocrevus in April this year. Due to have my 2nd (at full) infusion in October. I must say I had fatigue, though mild, after 1st 2 half infusion, which only lasted for a couple of days each time. 4 months on I’m definitely more alert than I was and think I’m walking further and faster. In fact, what used to take me 20-30 minutes I now walk in 10 minutes. I do use my walker which I recently obtained through our M.S.Society. It is carbon fibre which means it is light weight and easier for my husband (arthritis) to put in the boot of the car.

If my next infusion goes as well as the first I’ll be well pleased.

For me I can say I’m very pleased my reaction to Ocrevus so far.

Just need to get the Botox (bladder) sorted out now.


leighlincoln
3 months ago

Forgot to add that i’m going to see a Neuro Physiotherapist at the end of the week and am looking forward to knowing what he can get me doing. Bit of a lounge lizard really even though t 79 years of age I can do more than I attempt to do (need structure)


mlgilber1
3 months ago

@leighlincoln I’m so glad things are going well for you! I can’t wait to start mine. I haven’t heard anything from my insurance company yet, but it’s only been two weeks and she said it usually takes 4 to 6 weeks. Hopefully I don’t have to wait that much longer. My walking has been horrible, I don’t even think I could walk for 20 mins straight lol. I do go to physical therapy to strengthen the muscles. I hope things continue well and thank you so much for sharing your experience with me, I appreciate it so much!


leighlincoln
3 months ago

You’re welcome. Feel free to send me a private message any time if you want to chat x


ziggymc1
3 months ago

Hi Michelle, I’m sorry to hear of your recent struggles with MS. This condition sure sucks and definitely gives a new outlook on life. Remember to always be thankful as so many others have passed away from life threatening conditions so while we must struggle with our new challenges, I try to focus on everything I can still do and enjoy – like laying in bed and watching tv … just kidding ; )

In all seriousness, I was diagnosed 3 years ago and started on Copaxone for the first two years but switched to Ocrevus last July and definitely prefer an infusion every 6 months to taking a shot 3x week with redness & swelling.

I noticed that you are in Scottsdale as I live in Phoenix and yes, these summers are brutal! I just try to keep pushing myself as best I can but definitely listen to your body as it will let me know when I need to sit or rest.

Anyway, feel free to reach out if you have any questions or just want to talk to someone that understands what you are going through. Take care
– Mike


mlgilber1
3 months ago

Hey @ziggymc1! I’d love to talk to you more so I sent a friend request. I have my first half dose of ocrevus on the 12th and I’m super nervous. I hope you’re doing well! I look forward to talking with you.

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