Ocrevus

[JSSimp]

On today a visit with my Neurologist and discussed MRI with Active Lesion on Thoracic On the Cervical another lesion but nonactive with both lesions happening since last MRI in Feb. Tecfidera was started on 8/24, their were a a delay in treatment from the time of being diagnosed in March due to COVID-19 and being newly diagnosed it was best not to take a chance during the highs of COVID-19. As I discussed on yesterday Tecfidera is my 1st med being on. On today discussion for treatment plan of Steroid treatment for 3-5d and start Ocrevus after everything is approved. I was advised since Tecfidera may be a failed med for me it would be best to start ASAP. I’m a lil fearful of the med suppressing the immune system during COVID19 and the winter mth. Secondly symptoms becoming more aggressive if delayed. I’m praying to make the best decision with what’s ahead of me and not risking myself at the same time. Pls share your opinion or experience with me on this med. Thanks in advance. Many blessing!

[jimeka]

I am not on it, but there have been many success stories written on here. So many blessings that it all turns out well. 🤗

[JSSimp in reply to jimeka]

Thank you!

[jkdavid99]

Hello

I have been on ocrevus for 2 years. I was terrified. Then covid happened so i was scared again. I delayed my infusion. My MRI's are showing no new lesions after being denied 3 times to get ocrevus. I ended up with 30 new lesions. All is calm now. Loving the ocrevus. Stay safe and don't be around lots of people. Glad we have to wear a mask anyway so that might help. In my case so far, the benefits are greater than the risk. And i keep praying i will not get any infections. Good luck to you.

[JSSimp in reply to jkdavid99]

Glad to hear it’s working and Thank you!

[Corran731]

I’m on Ocrevus and it’s been really good for me. I had to stop Tecfidera because my JCV level was too high. I was concerned about COVID-19 too but if it makes you feel any better, reports from Europe (I don’t think I’ve read anything from the US side) show patients on Ocrevus show no higher complications than other patients who have contracted the virus. It could be because Ocrevus keeps the immune system from going into overdrive like it does in some people.

[JSSimp in reply to Corran731]

Happy to hear. Thank you!

[Frances_B]

This site will give you plenty of info on MS and COVID - Barts is one of the leading MS centres in the world, and there is a lot of good stuff on their blog.

sites.google.com/giovannoni...

Here's the main Barts website multiple-sclerosis-research... - it can get a bit "technical" for many people (including me) but they are right up with the research on MS all around the world - and Prof G is one of the world's foremost experts on MS

[JSSimp in reply to Frances_B]

Great info. Thank you!

[Neworleanslady]

I am scared of suppressing my immune system too so i take glatirimir acetate, generic Copaxone, which has no immunosuppressive components. I was on Tecfidera as my 1st ms med too. It dropped my wbc count a lot so switched to copaxone. Had a short, awful trial with aubagio, but have mostly used generic Copaxone. My mris stable but my walking slightly unbalanced. I also take generic Ampyra “the walking pill” and i find it helps too

[JSSimp in reply to Neworleanslady]

Thank you for this helpful info.

[pamgarner]

i was nervous like you at first,but I have been on it 4 years and no immune problems(knock on wood).the nurses told me just take care of yourself like the flu is going around and we are experts at that.communication with your dr a must,don't take any live vacines,i think that's the only rule,my old med got me on it ,it stopped working and this has been very good to me no new lesions 4 years

[JSSimp in reply to pamgarner]

Good information. Glad to hear You’re doing well with the med. Thank you!

[ahrogers]

I was diagnosed in 2014 and progressed on 2 medications in 2 years (Gilenya then Rebif) I started Ocrevus in 2016 on a clinical trial and have had no new lesions since. I love the twice a year schedule and have had basically no side effects other than a slight rash during first infusion that went away when they slowed the infusion and then my lymph nodes in my neck were tender for a few days. The last few infusions I haven't had any. Some people had thinning of their hair that later grew back. Some people start to feel worse a month before their next infusion which is referred to as the crap gap. I did have more fatigue before my last infusion. I plan to stay on Ocrevus.

I wonder if you could have PPMS since cord lesions are more common. If so Ocrevus is the only DMT approved for PPMS and RRMS. They have approved a few more DMTs since Ocrevus was approved but I think they all suppress the immune system too.

I just follow the reccomendations of wearing a mask and physical distancing in public and of course frequent hand washing. Make sure to get any vaccines before starting as Ocrevus decreases the bodies response to building up the antibodies vaccines are trying to get it to produce. It is flu shot season and if you haven't gotten the shingles vaccine yet ask about that.

Good luck to you!

[JSSimp in reply to ahrogers]

Great info. Thanks so much for taking your time to be so thorough. God bless!

[mikey1994]

Been on Ocrevus for exactly one year. I was diagnosed with MS in 2012 and have always been on DMTs. I think Ocrevus is the best for me. Just had my annual MRI, no new lesions, and frankly I feel like my very slow disability progression stopped in it's tracks a year ago.

Best of luck to you!

[JSSimp in reply to mikey1994]

That’s wonderful news. Thanks so much!

[Pink-1]

Personally I would take the ocrevis and isolate as best you can for a couple of months if possible. I’ve had no side effects accept extreme fatigue for a week or so after the infusion. You have to trust your Dr.

[JSSimp in reply to Pink-1]

Ok. I understand and thanks so much. I must say I have really enjoyed my neurologist in dealing with my care. God bless!

[Pink-1 in reply to JSSimp]

Okay be safe 🙏

[JSSimp in reply to Pink-1]

Thank you!

[JTZES]

I have been on 4 different DMT'S in the last 7years including Tecfidera. Just to let you know all DMT'S affect your immune system so don't worry about that in your decision making process.

The good thing is that your approved for Ocrevus. I have have been on it for two years with only 1 new lesion. Since its release for use it has become the leading preferred DMT on the market.

Since your currently active I agree with your doctor. 4 days of solumedroul to hopefully stop the current activity and get started on the Ocrevus.

Good luck with things.

[JSSimp in reply to JTZES]

Thank you so much and very helpful information. God bless!

[Goldilockssearching]

Personal experience only: Dx 2017 Ocrevus is the only DMT ever on. Had 1 new lesion between dx & first follow up MRI Neuro believes it developed while waiting to begin treatment so she wasn’t concerned. No new lesions since and disease has been stable. As far as Covid, I am no longer employed and my kids are home doing remote learning. I do not go out except appts and I wear a mask to them. Precovid I already distanced and was conscious of anyone who was ill or may have been exposed to ANYTHING. So far so good. Dr had me delay in May & upon B cell test, they were returning which worried me. Told Neuro infusion would be done in Dec (6 months out) period! She said OK. I do not want to chance it after waiting 3 decades for an answer to my troubles.

It’s an individual choice for sure as we all have different circumstances. For me, I’m pretty isolated so it’s a no brainer.

[JSSimp in reply to Goldilockssearching]

Wow!! Great information.

[twooldcrows]

i have been on Ocrevus since 2017..it is great for me ...i can do so much more i think because of being on it and of course no more shots in my legs and all the other areas...good luck..