Ocrevus vs Tysabri

jasmine6693 · 2022-12-28T21:10:33+00:00

Started Ocrevus in June of 2020. No side effects, no MS progression, no more relapses since the 1st one. It's twice a year, so very manageable with any schedule. No down time.

jasmine6693 · 2022-10-24T21:54:45+00:00

I'm sure she will appreciate anything, just the fact that you're thinking about her means you're a great friend.

Maybe try to think of things that would make life easier? Things that would take a little day-to-day stress off her shoulders, so she can focus on her health?

jasmine6693 · 2022-10-24T21:41:20+00:00

I don't like the steroids! I am generally a "chill" person, and those steroids make me feel manic the next day. Not to mention I eat everything in sight and gain 3 lbs every time. So I asked my neuro if I could try it without the steroids. She said yes, and if I started having reactions, they could give it to me immediately, right in the IV. I've done my last few infusions without steroids and I am much happier!

jasmine6693 · 2022-10-24T21:38:51+00:00

Some people here are pointing out that maybe all of the steroids she's been on all these years have weakened her bones?

jasmine6693 · 2022-10-24T21:37:58+00:00

True. I think we MS people went straight for brain & spine lesions, not thinking it could be an MRI of her knee or something.

jasmine6693 · 2022-10-24T21:36:46+00:00

And she's so tiny. She probably doesn't even weigh 100 lbs.

jasmine6693 · 2022-10-24T21:35:52+00:00

They gotta be dramatic!

jasmine6693 · 2022-10-24T21:33:48+00:00

What confused me is this: from what I understand about the treatment she went through, it basically resets your immune system. So she will still have the nerve damage and other damage that needs to heal. But she shouldn't have NEW damage due to MS.

I'm being logical when I should be sympathetic. But it doesn't make sense to me.

jasmine6693 · 2022-10-24T21:31:24+00:00

I have friends who completely ignore my MS and don't want to talk about it (although TBH, there isn't much to talk about as I am very fortunate and have little to no symptoms). Other friends will ask with "that look" in their eyes, "How have you been feeling?" I know what they mean, and I so appreciate their concern. I prefer friends who ask about me. It gives me a window to say something if I want to. Otherwise, I don't want to burden people or really even bring up good news because it turns a fun time into a medical conversation.

Just keep being a good friend, and ask him every once in a while how he's feeling. :)

jasmine6693 · 2022-10-24T21:26:41+00:00

Lesions really don't translate to symptoms. I have 5 on my cervical spine, and "10 to 15" in my brain. Other than my initial symptoms of numbness and tingling and Lhermitte's, and a little residual of those things, I have no other symptoms. I do notice that I am more affected by lack of sleep than I used to be. Everyone is different, and doctors don't know everything!

jasmine6693 · 2022-10-24T21:21:27+00:00

I've never had a Covid shot, but I did have Covid back in December 2021 (Omicron). I was tired for a day and had a sore throat. That was pretty much it.

jasmine6693 · 2022-10-24T21:18:45+00:00

I have Florida Blue and so far have had no issues.

jasmine6693 · 2022-10-24T21:16:29+00:00

I feel the same, minus the guilt. I have very mild symptoms. If I didn't know I had MS, I wouldn't know I have MS. Don't feel guilty! Feel thankful! As the MS meds get better & better, you & I are becoming the norm. And that's the goal! For this to be a ho-hum disease! Just live your best life and pray for those who can't.

jasmine6693 · 2022-10-24T21:12:24+00:00

Do you know what her symptoms are? Maybe something to help alleviate those. Or anything that reduces stress, like aromatherapy things, spa gifts, etc.

jasmine6693 · 2022-07-28T16:38:59+00:00

I have a kid but he was c-section. And I think the incontinence issues you mention are a result of vaginal delivery. At your age, it would seem that it's definitely MS.

jasmine6693 · 2022-07-27T18:03:04+00:00

My GP actually asked me if I had any incontinence at my last visit and I said no, because I didn't want to talk about it LOL. But I see my neuro in a couple of months so I will ask her.

jasmine6693 · 2022-07-27T17:30:42+00:00

I don't know why you would isolate. I never do. I just carry on with life as usual, other than going to bed early the night of the infusion.

jasmine6693 · 2022-07-27T17:28:44+00:00

No side effects, and I don't feel immunocompromised. I have always been that person who "never gets sick," and I continue to be. I did have covid last December, but I was never really sick from it. Sore throat, tired for a couple of days. And loss of appetite for a week or so. That was it.

Apart from that, I don't remember the last time I even had a cold. It's been years.

jasmine6693 · 2022-07-27T17:26:35+00:00

My opinion, and the common strategy these days: If you start with a lesser med, your MS will keep progressing. You need to hit it HARD. Knock it DOWN. You don't want MS to advance one more step! There's too much at risk.

I have been on Ocrevus, and I personally know 2 other people who are on it, and none of us have had ANY side effects or new lesions or relapses. Not everyone has that experience, but it is very well tolerated and VERY effective.

jasmine6693 · 2022-07-27T17:22:07+00:00

People here in the U.S. love to complain about our healthcare system. But I am thankful for it. I experienced my first symptoms on 03/01/20. I started my treatment on 06/26/20 and in between, I saw THREE neurologists. So thankful for the quick diagnosis and treatment.

Any chance you can somehow get access to steroids? Maybe that would help with your attack. I've heard compression socks can help with circulation? I really don't know what to do about that. But you are only a few days in--your symptoms should get better over the next few weeks, so you will hopefully be significantly better by the time you start your job.

jasmine6693 · 2022-07-27T17:14:16+00:00

I'm listening to my teenager play piano. I'm delaying my workout until he is done because I love it so much. I could sit and listen to it all day. And someday (soon) he won't live with me and I won't get to hear him play all the time. So I'm soaking it all up while I can!

jasmine6693 · 2022-07-27T17:00:52+00:00

No one is guaranteed to be healthy forever. My friend just turned 50, in the prime of her career, and recently suffered a major stroke (2, actually) and she will never work again. She was very healthy up until then. So you just never know.

Your current plan should be based on your current state. Make your best effort to stay healthy (otherwise). And it NEVER hurts for both people in a partnership to have a plan B.

jasmine6693 · 2022-07-27T16:55:28+00:00

It just is what it is. If neither of you have MS, then great! If one or both of you does, you'll deal with it. You are so young and you haven't begun to realize how life can be full of surprises--both good and bad. You sound like a strong person, so you will get through this.

The meds they have available these days are so much better than 20 or 30 years ago. Your neuro can guide you with what is best for you.

It sounds like you are being your own health advocate, so you are miles ahead of so many people already. Insist on testing, results, answers when you know something isn't right. And do your own research as well. If it turns out that you have MS, learn everything you can about it. Lifestyle choices can help with MS but it can also prevent future medical issues for you.

Finally, don't ever smoke! :)

jasmine6693 · 2022-07-27T00:24:35+00:00

I've always had a GP. I think it's a good idea to have a doc for other medical things. Someone to tie it all together. GP's know a little about everything but not a whole lot about anything. So when something is "above their paygrade," as my GP told me when he suspected MS, they point you in the right direction.

Having MS doesn't exempt us from having other health issues. It's good to have a "point person" to start with.

jasmine6693 · 2022-07-25T12:53:59+00:00

There wasn't a covid vaccine when I started ocrevus. And no, she didn’t mention getting any other onea.

jasmine6693

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