Can I expect "ANY" relief after 1st infusion?

[Mollyabigail]

Symptoms in early Nov, 2020, tests & more tests through early January. Officially diagnosed with MS by phone on 12/23/20. Covid vaccine 2/1/21, then hopefully 3/1/21. Then an infusion of Ocrevus by the end of March. Can I expect any improvement in even a few symptoms? I need hope on the horizon, ya'll. My neurologist is a young, healthy, false eyelash kind of gal, who hasn't a clue how upside down MS makes one's life. Thanks!

[kdali]

No, you should not expect anything except an 80% reduction in relapse rate/lesion formation.

[Mollyabigail in reply to kdali]

Thank you, kdali. I have much to learn. Be safe & well.

[MichaelFleeger]

I've had 6 Ocrevus infusions over past 3 years and didn't really notice any relief until after the 2nd infusion. I have ppms, but it has slowed the progression down quite a bit.

[Mollyabigail in reply to MichaelFleeger]

Thank you for your reply, Michael. How do you keep things positive? This is difficult!

[MichaelFleeger in reply to Mollyabigail]

Its rough, I know been dealing with this since 2005. I was feeling pretty low at start, but realized I needed to fight as hard as I could and not let it defeat me its hard believe me. But since Ocrevus I have better days and weeks.

[Mollyabigail in reply to MichaelFleeger]

It's s all so new and scary. For a life-long Christian, you would think this would be easy. But such an adjustment! Many thanks for your kind reply, Michael. It helps.

[greaterexp in reply to Mollyabigail]

I'll be praying for great results!

[anaishunter]

My neuro was very clear in setting expectations with me for Ocrevus: no active brain lesion, no new lesion at next MRI so that the disease gets "dormant" and progression is slowed down. He never used any other words.

No MS medicine today repairs the damage done. Symptoms might improve or not. The way I look at it is that by making the disease dormant, the treatment might give room for your own body to start some healing.I personally feel I regained a lot by starting to take better care of my body after diagnosis and treatment: non-inflammatory diet, exercise, meditation, and staying away from stress.

[Mollyabigail in reply to anaishunter]

Thank you so much, anaisshunter. My neurologist should be so communicative! I really felt alone in this diagnosis. Her nurses give me more info than her! So grateful to have a community here who understands. Many thanks!

[greaterexp in reply to Mollyabigail]

Is it possible to find another neurologist?

[Mollyabigail in reply to greaterexp]

I have had the same thought, greaterexp! Just worried it may confuse my insurance company. How does one change neurologists? I have not been comfortable with her since my first visit. But it's early in the game, having just been diagnosed 5 weeks ago. Will see how things progress, but she's on thin ice! 😊 Thanks for your input!

[anaishunter in reply to Mollyabigail]

I like my neuro because he

1) is very consistent in what he tells me

2) does not tell me what I want to hear; does not set the wrong expectations

3) has no problem saying that he does not have an answer to some of my questions and I accept that too. and there's a lot of that with MS, many questions, unclear answers from the medical experts.

4) always closes the appointment with "Do you have any other questions?"

[greaterexp in reply to Mollyabigail]

I looked online at my possible options in my area. There were only 2 neurologists then, so I looked at their profiles and experience, as well as patient ratings. Neither treated many MS patients, but I was unwilling to travel out of my area. I ended up with a pretty new neurologist. She did refer me to an MS clinic a couple of years later when she thought she was seeing signs of progression so he could advise about any treatment changes. You might ask around and look online, and then see if your insurance company insists that you see someone in your "network." If so, they can list those who accept their insurance. I wish you the best.

[jkdavid99]

Sounds like you need a new neurologist. I was diagnosed about 18 years ago. It dosen't get easier just different. Currently i am on disability and not working but i fought it the whole way. But a good friend told me long ago, be thankful you have MS and not something worse. MS sucks big time but you will come to terms on how to live your life. There is still good times to be had. But listen to your body. It knows best. Take breaks, and dont overextend yourself. All of a sudden 18 years have past and i still have pity parties for myself. And thats ok. Be well and use this forum to help. Good luck. Sending a virtual hug. 💕🙏

[Mollyabigail in reply to jkdavid99]

Thank you, jkdavid. Everyone has been so helpful & inspiring. I agree, this could be much worse. You are very brave to have battled this 18 years. Hats off to you! A virtual hug back at you!

[Tulip77]

It’s a whole lot to take in. I was diagnosed 8/2020 so I am very much still learning and trying to accept. I’m on a different medication so I can’t speak to yours, but I don’t think these medicines help symptoms or make us feel better. They just hopefully keep relapses at bay and slow disease activity.

[Mollyabigail in reply to Tulip77]

Hello, Tulip! Thank you for your reply. So you are less than 6 months out from your initial diagnosis. Please tell me - was it a huge disruption to your world? It feels like my life has stopped. I worked full time at a job that I loved. I did my own housework. Sang in the church choir (before Covid stopped us from singing), and was otherwise active in my church. Now, just taking a shower is a major struggle. I don't mean to have a whining pity party here, but the complete disruption has kinda blown my mind. I took my good health for granted, apparently! Blessings to you today!

[Frances_B]

Sorry to be the bearer of "bad" tidings, but MS pays no heed at all to any religious beliefs of any kind whatsoever anywhere in the world. Your faith may help you come to terms with things and deal with them, but it will not actually affect your MS in any way. You will get some relief from symptoms as the relapse which has triggered the tests which led to your diagnosis resolves itself, but depending on the damage done you may get virtually totally back to your normal self or be left with some residual symptoms - only time will tell (unless you have a functioning crystal ball ). As others have said, MS drugs are intended to reduce the number of relapses and limit the damage that relapses can cause. Any improvement in symptoms will be from your own body doing some healing.

Most newly diagnosed people dive headlong into the internet, which is quite understandable as they try to come to terms with their diagnosis. However, they also end up getting very confused as there is so much conflicting "advice" on the net, and a newly diagnosed PwMS rarely has the skills to sift the absolute garbage and misinformation from the legitimate information. They find conflicting advice on various diets which are claimed to heal/overcome/fix their MS - with every imaginable piece of poorly evidenced advice such as avoid gluten, don't eat grains, avoid meat/eat meat, ban dairy, stay away from animal products, sat fat is bad/is good - if there's dietary fad out there then it will included. The one thing that is 100% accurate is to cut the junk foods/drinks and over-processed foods from your diet, and focus on fresh foods, including lots of vegies.

There are also outright charlatans and hope peddlers pushing fringe garbage - often claiming celebrity endorsements as "proof" of their success. There are also a few "Big Pharma" conspiracy theorists who claim that the drug manufacturers just don't want you to know "the truth" about your MS because they want to maintain their profit margins. Just because a website is shiny and pretty doesn't mean it's content is accurate.

So, having probably made you completely miserable if you've just read through all of that, here's some lights for your tunnel

Sign up to do the free online Understanding MS course. It's been developed by MS experts, and based on student feedback was rated the number 1 course in the world in 2019 when it was first released. It takes about an hour or two a week to do, and many people on this forum have done it and will confirm how good it is. The next course starts mid-March - here's a link to sign up - you will find all you need to know in the FAQs. Register now and you will get reminded nearer the start date.

ms.mooc.utas.edu.au/

Here's the best article ever written on "MS Diets". (It will also help you understand some very basic concepts in how to "assess" the stuff that you will inevitably find online - and not just stuff about diets.)

msbites.com/multiple-sclero...

Here's an excellent 2019 webinar on "Debunking MS Diet Myths" which was presented by one of the quality MS organisations. I recently re-watched this, and had forgotten how solid the content was.

cando-ms.org/multiple-scler...

And lastly, until you develop a "nose" for working out what's shonky and what's not, stick to the legitimate MS society websites from all around the world to get your info from. Good luck with your learning, and remember that MS is not a death sentence, it's just another piece of crap that some people have to deal with in their lives, and many people diagnosed these days can do very well with modern medications and live pretty normal lives.

[Mollyabigail in reply to Frances_B]

Thank you, Frances_B. That's a lot of good advice. No, my faith will not affect my condition, but it feeds my soul. So I must give all this to Jesus & trust in Him.I will sign up for the online course & check out the other links. Many thanks & God bless!

[Juliew19673]

Diet is the 1 thing I have learned to trust other than Ocrevus to give me peace of mind, but I have not found any magic pill that makes it disappear, in the 3 years that I've been diagnosed.

Just hang on and do not give up! Some days are good other - not so much.. You can always come here to vent!

[Mollyabigail in reply to Juliew19673]

Thank you, Julie. I will research the diet part of it. This is news to me. And everyone has been so kind & helpful. God bless!

[kwhompus]

I have never felt any different after or before an Ocrevus infusion. I was also informed that my symptoms wouldn't get better, but the med would hopefully slow down the progression of MS. After 3 years of infusion my last MRI showed that I had no new lesions. By starting your infusions so soon after a diagnosis you may benefit greatly.

[Mollyabigail in reply to kwhompus]

Thank you for the reply, kwhompus. That's encouraging. Be well & strong!

[Hidden]

Hi Sorry about diagnosis, and unfortunately ; my experience with all DMTs is that they don't improve any symptomatic issues, only diminish( and in the case of Ocrevus ) Stop exaccerbations( at least so far, going on 2 years now) and slow disability progression. I know this doesn't sound great at this early stage, but after a while living with this disease( 13 years for me) it becomes huge not having quarterly exaccebations, and not having any progression in disability,I have foot drop and balance issues, but was able to work for 13 years after diagnosis as a letter carrier, very physical job. I also give a great deal of credit to wonderful physical therapists I was able to work with, as well as the DMTs. Best wishes Robert

[Mollyabigail in reply to Hidden]

Thank you, Bikeguy & everyone who replied overnight! My neurologist told me I would feel much better after my first treatment. I want some of what she is smoking! 🤣 (j/k). Maybe I do need a new doctor! My grateful thanks for all the responses here. God bless ya'll.

[kdali in reply to Mollyabigail]

She’s not wrong, but it may not last. I had the miracle 3 months of a normal life after Ocrevus and told the tale. It didn’t last and it never returned. I appreciate her confidence and I hope she’s right, but I also hope you get to keep it. 🙏

[Mollyabigail in reply to kdali]

Kdali, thank you. I am sorry your miracle 3 months did not last. Ya'll are so brave here & so willing to share your knowledge. Boy, I am thankful to have found this community. Best wishes to you. 🙏👍

[kdali in reply to Mollyabigail]

Hah, me too!! I feel lucky to have had it though 🙏 I got into a hot tub 🎉 I was looking hard for the normal days thereafter and it only came when I had steroids 😩 so I was disappointed often. Thank you!! 🥰 It’s nice to hear that we have helped or at least humored. I’m glad you are here!

[Mollyabigail in reply to kdali]

Thanks, kdali. I feel blessed. Maybe I can support other newbies one day. It could happen! 👍

[ahrogers]

There are some people who feel better after starting Ocrevus. I did not feel better but it is the first medication that seriously slowed it down.Good luck to you and praying you do well. Keeping your general health at its best through diet and exercise can help keep symptoms at bay. If you look up the topographical model for MS it explains.

[Mollyabigail in reply to ahrogers]

Thank you, ahrogers, for your reply. I will look up the topographical model. Prayers for you as well. This community is fabulous!

[Juleigh21]

Ocrevus helps me a lot for about 4 months and then I start going down hill. Many people call that period, the last 4 to 6 month, the “crap gap”. I experience that big time! I guess the good new is that I have 4 decent months. So every year I have 8 decent months and 4 crap gap months. What a way to live!

[Jesmcd2 CommunityAmbassador]

Hi Mollyabigail I see you have met a ton of family here! Welcome 😁! Like everyone says here, get a New Neuro! They become your new best friend, and you need to be able to talk to them. Call MSAA they can hook you up with an MS Neurologist!

Are you on or coming off a steroid treatment? Cause that can make you feel horrible! 😔

It can be really scary hearing you have MS, just remember, no one's MS is the same my friend!

Feel free to ask what ever you want to! Cry! Vent! We all have been here! 🤗💕🌠

[Mollyabigail in reply to Jesmcd2]

Hi, Jesmcd. Yes, actually I have been on a Steroid treatment for a week now for a numb tongue, of all things. I agree, it's bad! But supposed to taper off beginning Thursday a.m.

The MSAA can hook me up with a nuero? Cool! Thank you! Mine will not return phone calls. You may be right - time to change, if it will not mess with my insurance. Thanks! Be well & safe!

[Jesmcd2 CommunityAmbassador in reply to Mollyabigail]

Toll-Free Helpline [phone] is the number!! And steroids can have some not so fun side effects coming off.. so watch out for those!🙃🤗💕🌠

[mm1527mm]

Hello, i was diagnosed july 2019 and started ocrevus september 2019. Second full dose was in dec 2020. It has helped with my fatigue and live a normal life and pray it continues. I pray the mri remains unchanged this year as last year as i am due in february but may postpone until april or may due to covid. I was told if you start on a dmt early it is best. It is not to improve symptoms but slow progression although some people may feel improvement in symptoms. This group really helped me when first diagnosed as it was truly devastating to me when diagnosed and continues to help me. Glad you found the group

[Lalik]

Hi MollyIve had 4 Ocrevus infusions since 2019 and i see a good results on my walking. I think is important to consider what kind of MS you've been diagnosed and what symptoms you have ?