Neuro and New treatment: I went to my... - My MSAA Community

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Neuro and New treatment

mbrooks20 profile image
12 Replies

I went to my Neuro today. I am having a relapse so my left leg wouldn't lift or walk. I have a walker but still would trip over it. She ordered me a wheelchair which will be delivered in the morning and we have decided since my current meds ain't working we are going to start Ocrevus. I am nervous about it. Has it helped anyone? I have RRMS.

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mbrooks20
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jsb0410 profile image
jsb0410

Hi and I am so sorry that you are not feeling well. It is scary to start new meds but perhaps it will be a good switch for you to diminish the chances of subsequent relapses.

The wheelchair is a good idea to keep you safe.

I had my first two half doses starting in February. I was very concerned about side effects as my body hates infusions.

The infusions went smoothly and there were no immediate issues.

I had like a stomach “flu” and fatigue for about 4-5 days after each infusion and that was all. It has not helped my symptoms but hopefully will prevent further relapses.

I wish you the best and a speedy recovery!

mbrooks20 profile image
mbrooks20 in reply tojsb0410

I hope that it will prevent further relapses and who knows maybe in time it will help with your symptoms. We can always hope and wish.

RoyceNewton profile image
RoyceNewton

I have a friend here in Australia that says it is great, they add a little steroid to make the infusion better but she loves it

Iona60 profile image
Iona60

Ocrevus is working well for me. It is my 4th DMt. I wish that I could have been on it since my Dx.

Beckylp54 profile image
Beckylp54

Hi mbrooks20

I am sorry about your relapse and try to be strong in starting a new DMT. You won't know if it will help you unless you try. It is always scarey because of side effects. Think positive! You can do it.

Blessings becky

mbrooks20 profile image
mbrooks20 in reply toBeckylp54

My daughter brought up that someone lost their hair so I said well I guess I will be a sexy bald MS fighter. I noticed that when I joke about it and not worry so much it makes it less scary for my kids since they are teens they worry too much. It is scary because it is new but it is also worth doing to see if it will help to slow it down because I am determined this thing will slow down.

Beckylp54 profile image
Beckylp54 in reply tombrooks20

Great attitude! I am on my third DMT. I was scared each time I had to start a different one. You can hear and read all the info on these DMTs but it's your body and YOU are the person feeling the effects of the medication. I am who I am and I try to be strong but I still get nervous. And I have my Lord.

It takes great courage living with MS in so MANY ways. I applaud all of us because MS is rough and we didn't have a choice. Blessings as always

Becky

Beckylp54 profile image
Beckylp54 in reply toBeckylp54

Hi again

My kids were in there teens when I had my server EXACERBATION paralized etc. They thought I was going to die. They had to help take care of me. It changed their lives. I am walking somewhat now but it took years to get back up. MS affects your family so much especially if you were the one they really counted on in getting things done and organized! Take care

❤becky

mbrooks20 profile image
mbrooks20 in reply toBeckylp54

I work on making them laugh so it's not so stressful. I have a ghost that trips me and walls jump in front of me and I have a wall that I am determined to put my implant into it. They laugh and it makes it less scary for them.

Beckylp54 profile image
Beckylp54 in reply tombrooks20

Good for you! You are a wonderful mom/ person who is helping your family deal with you living with MS. I am better now or most times so I am able to do more on my own. Thank the Lord! Thank for sharing.

God's blessings to you

❤becky

carolek572 profile image
carolek572CommunityAmbassador

mbrooks20 I have been on Ocrevus since February 2018, and will be receiving my next infusion in August. I have found that my balance and gait are better as is my mental clarity. I still have all my hair, so that side effect didn't happen with me. But that is me. I have posted about all my infusions, and many others have as well. So, if you wish to read more, just put Ocrevus in the search box located top right hand corner. Happy Trails! :-D

JTZES profile image
JTZES

Don't be nervous. I've been on it for 2 years with no new exacerbations.

Side effects have been minimal. The best advice on side effects is to stay away from people who have a virus or infection. It does wipeout your system for awhile. This is a chemotherapy based medication so it could effect hair loss but that is very rare.

My symptoms continue to worsen due to already formed lesions but no new lesions since I've been on it.

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