Boost

[Neworleanslady]

How long after getting Ocrevus infusion do you feel a ‘boost?’ (For those that feel it wears off at around 4 months or sooner.) I asked my doctor and she said a couple of weeks. (I had my infusion this morning and im not feeling too much of a ‘boost’)

[jimeka]

I am not on Ocrevus so please will you tell us when or if you get the boost, blessings Jimeka 🤗

[starlight5]

Don't know that I've ever felt a "boost" after infusions and I don't think it's really to be expected, but I hope you are one of the fortunate that do.🙂

[Neworleanslady in reply to starlight5]

I was walking worse and other symptoms started getting worse after 4 months from my last Ocrevus infusion . I had a scheduled MRI that showed no worsening (yea!) and a blood test that said i had no B cells but i was feeling symptoms so I’m hoping for some aort of something now after this one

[Mollyabigail]

You had an Ocrevus infusion the 24th? Me too! Was my first full dose. I cannot say I had a boost the 1st time, but walking was easier. About 4 months after that initial infusion, my walking was more labored. I pushed on & worked. But housework almost was not accomplished on weekends those last 7-8-9 weeks. I would do a chore, then rest. Then repeat the process. Hubs will not agree to hiring housekeeping help. Says he will help. (sometimes it happens, sometimes not. But I digress).

Yesterday, my infusion nurse pushed my infusion through in about 2.75 hours. He said 'they' had shown that taking 4 hours for subsequent infusions was not necessary. BS! My throat closed up, so he slowed it somewhat. Later, my heart pounded for about 10-12 hours. Sorry, I have gotten off topic again.

As far as a "boost", maybe someone else with more experience can answer that. I hope you get a major boost! Hugs from the north end of Mississippi.

PS - has fall arrived on the gulf coast?

[Neworleanslady in reply to Mollyabigail]

I did have an infusion yesterday on the 24th. They scheduled me for 6 hours bot it took a little over 5. I can’t imagine how I’d handle less time.

Walking being easier is exactly what i mean when i ask about a ‘boost.’ Easier walking would be a huge boost for me. Do u remember how soon after your 1st infusion you felt your walking got easier?

[Mollyabigail in reply to Neworleanslady]

About 4-5 days after that first infusion, my hubby said, You are walking better." The improvement was gradual, & I had not noticed until then. What a blessing to get treatment, right? God is so good, & I am very thankful. I hope you get great results! 👍❤️

[Neworleanslady in reply to Mollyabigail]

Thank you! That’s exactly what i was wanting to hear. Yes God is good. I still thank God this is me with MS rather than my kids or anyone else where id have to care for them but I wouldn’t have a full understanding of the disease.

Btw i love this weather. Lower humidity feels fabulous!

[Neworleanslady]

That was my 1st full dose too!

[rjoneslaw]

I felt a boost after my 1st 1/2 dose several years ago the spasms I had were relaxing while I was getting it. I had really severe spasms so they relax a bit more after each infusion.

Now I do rapid infusions which I love

Now that I've been getting the infusion for awhile now, I have seen several improvements or boost after each one.

Along with the infusions and my online exercise and in person pt I'm doing well.

[Neworleanslady]

I’m glad to hear that and that you seem happy with your infusions. How long after getting the infusions do you start feeling the boosts? Immediately or a few days after?

[twooldcrows]

i feel so much better doing the infusions for i do feel that they have really helped me in lots of ways ...walking ,tolerating heat better and more time in the garden ...love feeling better...

[Neworleanslady in reply to twooldcrows]

That sounds great.How soon following the infusions do you feel better? Or does the feeling better last you the whole 6 months?

[twooldcrows in reply to Neworleanslady]

i do not feel any difference but do feel great all the time...

[sMilEs_N_bLuE_sKiEs]

I’m not sure if this info helps but here goes. Before my first dose I was given 3 grams = 3000mgs of steroids. Two weeks later I started the ocrevus…. I was walking on clouds 😅So much Energy!

I’ve had 3 full rounds of the meds now.

The toughest I would say was between my first and second full doses..

I would guess because I had more energy after the first (steroids) that I did more which could had tired me out sooner.. I’m do for my 4th soon; after blood work; I’m still going good! 👌

You learn to rest when needed and to go when you can. Listen to your body, that info will go along way!

[Neworleanslady]

Thank you! I’m so sick of MS.

That info helps a lot.

I know i got steroids before my 1st infusions, i guess i just assumed i got them before this one. I’ll have to ask. But not 2 weeks before, they were just put in before the ocrevus was started. I guess my vision seems a little better. I so much want my walking to improve, at least to the level it was before starting Ocrevus,when i was on Copaxone

[sMilEs_N_bLuE_sKiEs in reply to Neworleanslady]

Insurance and how bad my ms was getting at me is why I got it two weeks before my first infusion. My inflammation was really bad in the beginning. Since then, Every round of ocrevus I’m also getting steroids with it. Hope that makes sense. This last round I was given both simultaneously; made the time shorter. Usually Im given steroids first which takes an hour; then they run the ocrevus right after.

Yes!

Ms sucks!!!

Don’t mind answering any questions you have, don’t mind helping!

[Lizard50]

Hi Neworleanslady! I have been on Ocrevus for about 4 years. I receive my next infusion tomorrow thankfully. For the last 4-6 wks I have felt increasingly bad and the fatigue gets the upper hand. For me it seems to wear off and I can tell when I need the next infusion. I will get a "boost" a few days after the infusion and that's how I know it's working. The boost is like relieving the severity of symptoms for me but never removing them. I hope you are feeling better soon.

[Neworleanslady in reply to Lizard50]

Thank you very much! I’m glad to know that i still may see slight improvement in the next couple of days.

I wish the best for you with your infusion. I got a really good nap when i was getting mine! If you do too-pleasant dreams!

[tompumo]

I don't know if I'd call it a 'boost'. I feel a slight lessening of symptoms a day or two after the infusion, both physical and cognitive. My fatigue is still there - maybe slightly better, but no big change. And 4 months is about right for the duration. I've been on Ocrevus for 3 years and was on Copaxone for 7years before that. For me, I feel more improvement with the Ocrevus.

[Neworleanslady in reply to tompumo]

Thank you. That is what i meant by boost-a slight lessening of symptoms. Glad to know you noticed this after a couple of days as opposed to immediately following the infusion. I haven’t noticed much yet from fridays infusion but I’ll see if I notice anything in a day or 2

[Raingrrl]

Ocrevus is designed to keep you from progressing. It isn’t a miracle drug that fixes existing damage. There isn’t anything yet that fixes myelin damage though it’s being worked on. If there is a “boost” it would likely be from the steroids given at the time of infusion to tamp down inflammation.

Sometimes when your body isn’t creating new damage and you still have brain reserve, your brain can “rewire” itself and that will improve symptoms.

[Neworleanslady in reply to Raingrrl]

I do understand that nothing repairs damage that was already there. It’s just that i was doing better when i got my 1st O infusion, then 4 mos later I started havimg symptoms. Had MRI and bloodwork at that time that showed no progression. So I’m hoping to get back to prior levels. Nothing more expected and not hoping for more

[kdali]

I feel like hot garbage from the Benadryl, so always much better when that crap wears off. I’m also one to feel amazing with a small dose of steroids, so I’m usually a lot of fun for a few weeks after. My first O experience was great until around 4mo when leg issues started to get worse. My second experience was not as well, but the theory on that is that I was also postpartum with a year of baby not sleeping. I’m going to start my 3rd try soon, and the plan is to manage my legs and fatigue better this time when or if the crap gap begins.

[Neworleanslady in reply to kdali]

With all youve got going on it sounds hard to pinpoint exact causes of individual symptom exacerbation causes! I mentioned how someone on this forum said they do Ocrevus every 5 months but my dr said they would only do that if my B cells started repopulating at that time

[kdali in reply to Neworleanslady]

Preach! Moving house during a pandemic wasn’t nothing that year either 🤣 I asked about that also and mine said the same thing, and noted very few repopulate early.

[Peddler]

I wish I got boosts from Ocrevus but instead it seems to boost the progression of this darned disease. It worked wonders for a friend which prompted me to try it. After a couple of years on it, I've gotten much worse. Now I need to find an alternative to Ocrevus that will at least hinder the rapid progression of MS I've been experiencing. If O works for you be thankful.

[Neworleanslady in reply to Peddler]

That sounds awful. Please let us know what you switch to and how it works for you

[Peddler]

It is a challenge for sure, thanks. I will update if I ever find this area again. 😕

[JTZES]

The only boost you get is from the steroid which will only last upto a day.The 4th and 5th month it is wearing off and you can have a change in the way your symptoms feel.

Per the manufacturer the infusion should be given every 5 months not 6. The insurance companies will not cover it at that frequency.

I've been on it for 2 years and no new lessions.

[Neworleanslady in reply to JTZES]

Thank you. I had an MRI with no new lesions thank goodness. My walking is not too improved since recent (1 week) infusion. I would think if the manufacturer recommends every 5 months then the doctors and insurance companies would follow suit. Maybe that is coming-

[JTZES]

At 62 thousand a dose making it every 6 months it is saving the insurance companies a lot of money per year. The insurance companies don't care about how you feel. They only care about is the overall financial cost.

[Neworleanslady in reply to JTZES]

Yes I guess you’re right. But what if the doctors order it like that. The insurance companies would have to at least consider it right?

[JTZES]

Yes they would have to consider it.