Ocrevus: I started Solu Medrol 1000mg x... - My MSAA Community

My MSAA Community

8,963 members20,684 posts

Ocrevus

JSSimp profile image
14 Replies

I started Solu Medrol 1000mg x 3 treatment on yesterday and will complete on 11/13. I’m getting ready to start Ocrevus after I was told Tecfidera is failing after 2 1/2mths, I developed 2 lesion one an active and other nonactive since Last MRI In Feb. As I was told the lesions possible developed during that time. I was awaiting med during COVID19 from March-August with a start date of 8/24, new MRI completed 11/3. When starting Ocrevus is their certain vaccines required before administered because as I was reading I notice their were just can’t recall my Dr mentioning because of the shocking news. I do recall their’s a ton of labs. I did notified my Dr on yesterday so just awaiting a call. With starting Solu Medrol continuing Tec until Ocrevus is started is a lot to digest in one conversation. Pls share your feedback. Thank you!

Written by
JSSimp profile image
JSSimp
To view profiles and participate in discussions please or .
Read more about...
14 Replies
RoyceNewton profile image
RoyceNewton

I heard from a woman that I actually met that the steroids actually help with the body accepting the infusion, less side effects. Tec failing was rubbish. These medicines swilll not stop you getting lesions only slow down the rate at which you get them. Relax take a deep breath. You are doing the right thing, ocrevus is newer and much stronger than Tecfidera. You are doing the right thing.

JSSimp profile image
JSSimp in reply to RoyceNewton

Just to let you know Royce your information and writing have been so helpful for me. You’re a blessing from God. May God continue to bless you on your journey and all your inspirational writing is very motivational. Thanks a bunch!

RoyceNewton profile image
RoyceNewton in reply to JSSimp

Thank you very much, that is most kind of you.

JSSimp profile image
JSSimp in reply to RoyceNewton

You’re welcome!

Frances_B profile image
Frances_B in reply to RoyceNewton

Royce - please be careful about making sweeping statements such as "Tec failing was rubbish" and "These medicines will not stop you getting lesions only slow down the rate at which you get them". The ultimate desired purpose of treatment is to try and stop the development of new lesions - largely through reducing the frequency of or eliminating relapses, although new lesions can develop without new symptoms or a clinically evident relapse. Maybe do some research on NEDA as a treatment aim (No Evidence of Disease Activity). Barts blog has plenty of stuff on NEDA and they have been very proactive over recent years in promoting NEDA as the goal in MS treatment, and this philosophy is what any neurologist worth their salt follows.

multiple-sclerosis-research...

multiple-sclerosis-research...

JSSimp - if your last MRI was in February 2020 and you did not start Tec until nearly the end of August the inactive lesion probably developed in that time period - lesions generally only show as active on MRI scans for a few weeks. The active lesion has possibly developed since you started Tec and that is most likely why your neuro considers that Tec is not working for you and has recommended changing meds. You might find this article useful, especially the info under the heading about "Modifiers":

nationalmssociety.org/What-...

The purpose of the steroids you are being given now is to try and reduce the inflammation of the currently active lesion and they are nothing to do with starting Ocrevus (as Royce has suggested). When you have your Ocrevus infusion any steroids etc to reduce infusion side effects will be given at that time.

mstrust.org.uk/a-z/ocrevus-...

As far as vaccinations and Ocrvus are concerned - yes some are required before starting Ocrevus but your neuro should guide you through this.

nationalmssociety.org/Livin...

nationalmssociety.org/For-P...

multiple-sclerosis-research...

All the questions you have asked are answered on various legitimate MS Society websites, and they are the best place to look first when you want information about these things - you will get info on those sites which has been written and checked by people who know what they are writing about. Just be very careful about info you might find on some sites set up and run by individuals promoting their own diets/ supplements/ "protocols" as these sites often have bad info on them and are supporting/ promoting their own vested commercial interests. Some are still trumpeting causes such as the discredited CCSVI procedures, and promotion of conspiracy theories about "Big Pharma" and the MS Societies being in cahoots to hide "the truth" from PwMS also gets a look in.

erash profile image
erash in reply to Frances_B

Thank you

A wealth of info 👍

JSSimp profile image
JSSimp in reply to Frances_B

Wow!!! Such great information and a much better understanding of everything with the questions answered to the fullest. I’m so thankful for you sharing this wealth of knowledge with me and taking the time out in researching and attaching the articles. Many Many blessing your way. May your journey with Ms be great. God bless!

Frances_B profile image
Frances_B in reply to JSSimp

No worries - I suppose my main point is that the information you want is out there and very easily found from sources that are readily accessible. There are many reputable MS organisations around the world, and most of them have pretty good websites.

Until you have learnt enough sold basic MS info to be able to make reasonable judgements on the validity of MS related information it would be best to avoid any sites that claim their content or offerings will help you to "heal" or "overcome" your MS - most of these types of sites are run or promoted by individuals largely driven by personal interest agendas related to making money off books/ supplements/ diet protocols and and a whole heap of other things which may not be in your best interests. Some of the "heal" or "overcome" sites are run by registered charitable organisations but there are still issues with the validity of some of the specially selected "scientific evidence", which is often cherry-picked to suit their own perspectives. Social media is also very accessible but there's even more garbage and misinformation floating around on social media.... :(

Find out if there is a local MS organisation in your area and make contact with them - most of them have options available for helping newly diagnosed people work through things.

Sign up to do the next running of the Understanding MS free online course - unfortunately the current one finishes in a few days, and the next one isn't until March next year, but it is a brilliant course and many people on this board have done it and will agree with me recommending it to you. If you register now you will get a notification through when the next one is about to go live.

ms.mooc.utas.edu.au/

Keep a permanent "hat full of questions" on your head, and good luck with learning "stuff" :)

JSSimp profile image
JSSimp in reply to Frances_B

Thank you! I will check it out and save this site as well. Looking forward to learning all I can to make the best decisions about my long term health with living with Ms. Thanks for your wealth of wisdom. God bless you on your journey!

JSSimp profile image
JSSimp in reply to Frances_B

I signed up for the class in March. Thanks again.

Neworleanslady profile image
Neworleanslady

I hear a lot of good things about Ocrevus on this site so I’m hoping that will be awesome for you. I feel for you because i hate going thru med. changes and labs and MRI’s and stuff where MS has to be front and center on my mind and I can’t focus on life and regular stuff.

JSSimp profile image
JSSimp in reply to Neworleanslady

I’m also hearing the same and feeling more comfortable daily with hearing from others opinion and me doing some research. My fear is getting less daily and I know I want to live my life with the best I can with getting the right treatments. I really like my Neurologist and I feel they have been honest throughout the course of being diagnosed and willing to sit down with me more than just 15m as I have seen most do. Thank you!

Tazmanian profile image
Tazmanian

Research ,research ,research good luck!

JSSimp profile image
JSSimp

Thank you!

You may also like...

Ocrevus

with both lesions happening since last MRI in Feb. Tecfidera was started on 8/24, their were a a...

Ocrevus

Have any of you taken Ocrevus besides @[595079] ? I talked to my Dr yesterday. She said it could...

Ocrevus

It is finally starting to grow back and I have decided to discontinue the Ocrevus. I would have...

Ocrevus

that other drug that Ocrevus is really an updated version of that drug that starts with an R. Sorry...

Ocrevus

Can anyone on Ocrevus please tell me how early you started feeling a crap gap? My infusion was a...