Ocrevus starter: Hi, this is Irishmar... - My MSAA Community

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Ocrevus starter

Irishmar8 profile image
25 Replies

Hi, this is Irishmar! New to this posting. I started my first infusion yesterday of Ocrevus. I'll get next dose in two weeks. No bad reactions just tired and had slight headache. Today feel better, but still have balance, weakness, and my various other MS symptoms. I just turned 60. Diagnosed 2004, tookAvonex for 12 years had no relapses or MS symptoms during that time. My mother had MS in the 60's I was just in grammar school, so I've known of MS since I was 7. Never thought I would get it. I'm Irish and live close to Chicago. I have two adult daughters. Both married one with children. I make them both take vitamin D. I believe that it is the environmental factor to MS, that and hormones. My Mom also was diagnosed at 46. She was very bad bedridden last ten years of life no meds taken at all. My symptoms kicked in around 54 I blame menopause.. Vitamin D and hormones. That is just my hunch, no doctor ever said this. Sometimes we know more then Doctors though. I had the genetic predisposition. Vitamin D could be the environmental factor. I stay out of sun since my 40's I'm fair skinned and very heat intolerant. Just some background on me. I'll keep you posted on the Ocrevus.

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Irishmar8
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25 Replies
Morllyn profile image
Morllyn

Welcome Irishmar8 ! I am sorry that you have MS but glad that you found this group. I think it is pretty good.

Keep us up to date on your Ocrevus infusions because there are others who are trying to decide if it is right for them.

Again, welcome👋 and take care of yourself.

Irishmar8 profile image
Irishmar8 in reply toMorllyn

Ocrevus

Irishmar8 profile image
Irishmar8 in reply toIrishmar8

Thanks . Nothing was ADA back in the 60's no meds. I didn't expect to feel as good as I do since my first Ocrevus infusion. So far I like what I see.

erash profile image
erash

Welcom Irishmar8

There probably weren't many options for treatment for your mom 😟

Glad to meet u and hope the ocrevus is a winner for u and everyone else!

SlmHarris profile image
SlmHarris

Best of luck! I have taken both of my 1st infusion with no problem!

Irishmar8 profile image
Irishmar8 in reply toSlmHarris

Have you had any improvements

SlmHarris profile image
SlmHarris in reply toIrishmar8

My MS Dr says you really do not see changes for 2 to 3 months.

Irishmar8 profile image
Irishmar8 in reply toSlmHarris

I called my Dr office today about my improvement. The nurse said, as they only started infusing Ocrevus in May they don't have information in regards to the norm, no history to compare. I had also heard it wouldn't kick in for about 4months. The nurse I spoke with said she has heard from other patients too who say the same as me. All MSers have different courses maybe mine reacts quickly to meds to lesson certain symptoms on areas of my nervous system where myelin hasn't been destroyed. Who knows, but I'm very happy with Ocrevus right now. If you start itaking it let me know how it goes. I hope you do better too. I go to Rush University medical center in Chicago.

WAshingtongirl profile image
WAshingtongirl

Welcome, Irishmar8 . With your mom having had MS, I'm sure your diagnosis (or first symptom) really hit you differently than it did a number of us here. I had never even heard of MS when it was first mentioned to me (at 33). As for Vit D, I grew up in sunny Southern California and spent most of my childhood outdoors. I have 4 siblings. 3 of us have Hashimoto's (Mom, too), but I'm the only one with MS and a few other autoimmune diseases. Sure wish the researchers could identify the MS triggers, a cure, etc...

Sorry, I got carried away. 😉 Anyway, we are happy you are here (just sorry, as Morllyn said, it's because you have MS). Thank you for the introduction! And best wishes and prayers while on Ocrevus. Please keep us updated and visit often. We love meeting new friends. 💕

Irishmar8 profile image
Irishmar8 in reply toWAshingtongirl

Thanks Tutu. I never would have expected to end up with MS like my mom. I have 4 brothers, they don't have it. At first I was so scared that I'd end up just like my Mom. So far not any where near as bad. She must be smiling down on me

Yooper profile image
Yooper

Irishmar8: Praying for the best for you. Your post sounds very much like my story of my Mother and my timeframe of MS. I have pushed all my family to take vitamin D. Living up north, it seems everyone you talk to knows someone with MS. Stay positive and God's Peace.

Irishmar8 profile image
Irishmar8 in reply toYooper

Thanks Yooper. It is great to talk to everyone. I'm not much of s computer whiz, so I'm not sure if I'm doing this right. I just replied to four different post. Does everyone see all the replies? I'm not on Facebook either, I'm a Dinosaur as far as social media goes, Never have been on a computer based community chat.

WAshingtongirl profile image
WAshingtongirl in reply toIrishmar8

You're doing great! Your replies are here and visible.

One suggestion: if you're replying to me or want to ask me something, type @ tutu (but leave out the space between the @ and Tutu).

Here's an example:

Hello Irishmar8 .

I typed:

Hello @Irishmar8. It will only highlight a name correctly once in each posting. But that's how it's done. Otherwise, you've got it!💕

Irishmar8 profile image
Irishmar8 in reply toWAshingtongirl

Thanks

greaterexp profile image
greaterexp

Irishmar8 , welcome to a great forum or site or chat. I've learned so much from everyone here and been given oodles of love and support. I'm sure you'll not only receive those, too, but will bring your gifts to all of us.

We'll all be watching your posts about Ocrevus. I'm so thrilled to hear you tolerated your first dose so well!

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply togreaterexp

Well said @greaterexp

Irishmar8 profile image
Irishmar8 in reply togreaterexp

Thanks, I feel even better today!

greaterexp profile image
greaterexp in reply toIrishmar8

That's such exciting news! Thank you for letting us know.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Welcome to the group Irishmar8. Please kept us posted on your progress. I'm Lynn aka Calfeechick. Just dx'd last winter, went numb 15 months ago today! Was very active, athletic Nana to 8, I'm 69!

Irishmar8 profile image
Irishmar8 in reply toCalfeeChick

Hi Lynn thanks for the welcome.. I'm a Nana also. To a three old and 8 month old. They are my heart. My name is Marianne. I've been feeling pretty good since Ocrevus, hope it lasts or even gets better.

Irishmar8 profile image
Irishmar8

Thanks, glad to have made this contact. Today is 2nd full day after half Ocrevus infusion. The spasticity that I have been experiencing for so long has improved dramatically. My back pain is not as bad. I didn't expect the Ocrevus to make a difference outwardly so fast. Is it coincidence, don't think so, I've always reacted well to new meds.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Wonderful😊💞 I have appointment in October and will be discussing new meds. So happy to see you are doing well👍💞👌

Sukie427 profile image
Sukie427

Welcome, Irishmar8 . Welcome to the club that nobody wants to be part of, but which I think is one of the best support groups I have ever been in, and I am not a fan of support groups. My mom had MS also, but hers was basically benign and limited to oculitis. I did read somewhere that some researchers have found a genetic connection in a weird gene sequence, and I have warned my sons, but that's still a very up-in-the-air issue. Good luck, and I hope that you find some comfort here.

bxrmom profile image
bxrmom

Irishmar8 Welcome to this wonderful group. Glad Ocrevus seems to be helping earlier than you were told it would take :) Please keep us updated how things go with your Ocrevus infusions and how you are doing.

Jessie

cljones profile image
cljones

@irishmar8 welcome I have found this group to be very helpful and I am sure you will also.

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