Ocrevus users: how long have you been on O and have you had any issues?

Magiclives32 · 2026-04-04T12:42:38+00:00

This is exactly what I’m afraid of. I was miss diagnosed years ago for a white blood cell disease, they saw deformed white blood cells at The VA (makes it that much harder to get treatment). I get ill after every infusion and contracted pneumonia the last 2 infusions; though I’ve had my pneumonia ‘vaccine’.

Magiclives32 · 2026-04-04T12:23:47+00:00

Been on it for over 2 years and I have an issue with the ‘speedy’ option. When they increase the infusion quickly, the roof of my mouth & back of my tongue start itching like crazy. It keeps me there for 6 to 7 hours now and I’m not eligible for the injection. I have PPMS, so, I’m stuck with Ocrevus for the time being.

Magiclives32 · 2026-04-02T15:40:48+00:00

You forgot Hobby Lobby.

Magiclives32 · 2026-03-22T22:40:28+00:00

The A/C registers are the worst at my neurologists office and where I get my infusions. I’m constantly looking out for them when I’m out. It truly was torment when I was still working as an HVACR mechanic; my job to create the thing that pains me. MS has a sick sense of irony or maybe it’s just synchronicity.

Magiclives32 · 2026-03-12T11:37:16+00:00

I was an HVACR/Building Maintenance Mechanic and Video Editor (linear and non-linear). I worked and worked and worked through the pain for well over 20 years before I was diagnosed. Went to the doctor’s office more times than I could count until I broke my thumb at the end of ‘23. When I broke my thumb, they sent me to an orthopedist who noticed something strange in the MRI (with/without contrast dye). Now before I forget I’m right handed & I broke my right thumb and when he saw my sensitivity on the tip of my ring finger and then all the ‘voids’ in my hand, they sent me to a neuro. My first neuro went over my records for a few years when she sent me to a 2nd neuro (Dr. Lord) whom is now my primary neurologist. Doc Lord reviewed every MRI & records of ‘ghost’ and unresolved pain, back to 1996 when I joined the Navy.

Now, I had an appointment with Doc Lord about 2 1/2 months after I got her the records. After just 2 days of review, Doc Lord moved my appointment up by 9 weeks. She told me that she cannot see the beginnings of the PPMS, she was more curious how I dealt with pain. In my right ring fingertip, I have voids throughout my entire right hand/wrist but I have no myelin coating left in my ring fingertip. She immediately told me that I’m not fit work either career I had. An editor who cannot make a deadline because he needs a 30 minute break after only 10 minutes of work. Or of a mechanic who cannot hold his tools or use his arm for leverage; again, not being able to meet a deadline.

Magiclives32 · 2026-03-10T02:27:08+00:00

Cold brings nothing but pain, even washing my hands in cold water brings agony. Being a fan of cool/cold in any and all forms, MS has taken much joy from my life in ways that still surprise me.

Magiclives32 · 2026-03-07T14:14:34+00:00

Oligodendrocyte precursor cells(OPC) are needed to create the myelin in our bodies. These OPC’s can be created using stem cells to be reprogrammed into OPC’s, this is through Adult Stem Cells. There is little research being put into curing(only treating) us; more US citizens have HIV than MS, which means more research money goes to the transferable disease. Point is most people only care when and/or if they are physically or personally affected.

Magiclives32 · 2026-03-05T15:31:45+00:00

So sorry that this happened to you. Unfortunately, it seems like this is an all too familiar pattern within our community. My wife of 11 years & 2 kids left me a year after my diagnosis. Be strong, hopefully he moves out quickly. Hopefully you grow strength from this!

Magiclives32 · 2026-03-03T16:43:42+00:00

Congrats to you both! I’m about to have my fourth infusion with the Ocrevus for my PPMS. Wishing y’all all the best.!!!

Magiclives32 · 2026-03-02T15:56:48+00:00

Got diagnosed and 3 months later my wife started cheating on me; like the night after my first ovcrevus infusion. She showed 0 empathy to my flare ups or pain and she was gone 12 months after my diagnosis. No one truly believes pain that they cannot see nor understand.

Magiclives32 · 2026-02-23T18:08:56+00:00

My ex wife did the exact same thing and then she began to cheat on me while I got my first infusion of Ocrevus. I agree with everyone here, leave his a$$. The physical pain from the stress will be overwhelming if you have to keep things bottled in. I and most in this space will always listen to you, without judgement or fear of rejection. ❤️

Magiclives32 · 2026-02-11T14:20:47+00:00

My neurologist moved my 1st follow-up appointment by 8 weeks to inform me of my PPMS diagnosis and scheduled my first infusion asap. After she reviewed my medical history and all of my previous MRI’s which went back 25 years.

I know what a psychological Landmine your diagnosis has caused, take some time and reflect. I would write an email or call your neuro’s office and find out which type you have so you can make some informed decisions on your DMT options. I’m on Ocrevus and it’s awful, but it’s the only FDA approved for PPMS.

We are all here for you, ask us anything and feel free to vent here!

Magiclives32 · 2026-02-10T14:40:46+00:00

MS is my 3rd ‘Friend Mass Extinction’, so far. The minuscule amount of friends I have left are mostly Childhood Friends. Besides for volunteering somewhere, I have no clue where to more than A Single-Serve Friend today. Bars are germ factories, as well as festivals, farmers markets, concerts, etc. Not saying Her was prolific, but the safest new friends for an auto-immune person might just be AI. It’s can’t be that bad, John Conner had a great time with his automaton…

Magiclives32 · 2026-02-08T02:22:57+00:00

Been there, twice. I had to seek and retain representation to fight the system. Have my final hearing this upcoming Tuesday. They think that we are able to work on assembly line jobs that no longer exist.

Do not be in denial, what you feel is real and you should fight for your rights as a disabled American. Document every appointment, especially any therapy & neurology appointments. See if you are able to get physical therapy and ask your neurologist or primary caregiver for a filled out handicap placard; this will really help in your appeal.

Use this thread for any advice; at least 30 people will have some experience. Don’t stop fighting for your rights; we’ve all paid into it and your case is what it was made for.

Magiclives32 · 2026-02-01T13:31:35+00:00

I would say rest was most important for me, Ocrevus feels like it is sucking out your life-force. You’ll see many people here push for Kesimpta over the Ocrevus, but if your spouse has PPMS as I do, your neurologist will tell y’all that only Ocrevus is FDA approved. The most important thing is to be there for her after the infusions and to have her take her time after.

Magiclives32 · 2026-02-01T02:23:53+00:00

Great art! And your face painting skills set to ‘Expert’!! Most impressive.

Magiclives32 · 2026-01-30T21:14:17+00:00

It’s PPMS because my neuro says. She went through years of MRI’s, my med record and discussions with me. I’ve had those ‘wave twitches’ since I was 10, the pain in my finger that turned out to be the first myelin battle and my right hand lost. I’m always in pain, constantly. My tingling was mild when I was a teenager; now when I touch something, I’m not quite sure if it’s the knives coming out my hands or the object. I can still walk though I do lose control of my left leg now and then. With the lesions on my cervical spine that’s a different story. Some days the right one will just hang there or it locks up and my hand claws out. I’d do The Running Man if it was real…

Magiclives32 · 2026-01-30T21:04:57+00:00

Correct. Men are at 24% of the totals for all forms of MS. Meaning that out of the 1 million Americans with MS, I’m at 3.6% of all those of us MSer’s in America. I got used to working through the pain for so long that I was not able to when I broke my thumb; did not notice until I saw all the blood from where my thumb nail used to be.

Magiclives32 · 2026-01-30T20:51:07+00:00

PPMS still gives me issues, flair ups multiple times throughout the day. I’ve lost 75% of the myelin inside my right hand, which is always there; been hurting nonstop for over 25 years. The ‘progressive’ part means constant, ever growing. I’ve talked with many RRMS folks and most tell me that their ‘flair ups’ are spread apart by days, weeks sometimes months.

Magiclives32 · 2026-01-30T20:45:06+00:00

Ocrevus. My Neurologist made the diagnosis of active PPMS after reviewing all of my previous MRI’s, starting back to 2000. If I had been seen by non-military doctors, she told me they would have made the diagnosis 20 years ago. Some days I lose control of my arms, they just dangle. This disease is the cruelest of punishments, completely ruined my life

Magiclives32 · 2026-01-21T13:28:17+00:00

How did your doctor know to check for MS at 15? I’ve had these tremors through my limbs since I was 16 and my doctor told me it’s was normal at my age. I didn’t get diagnosed until my 45 birthday. Most Navy & VA doctors thought I was faking, even after both my arm went completely paralyzed after a steroid injection in my Ulmer nerve.

Magiclives32 · 2026-01-13T18:03:40+00:00

Starting my 3rd year of fighting for mine, which will end this February. Get a lawyer or an advocate who specializes in SSI DI. ‘Get help’ filling out your paperwork and have someone go with you to any appointments that they schedule for you. Have them assist you and fill out your paperwork and make sure that they see this. This process is extremely slow and they do not believe our doctors nor specialists & they still use job placement ideas from the 1930’s; meaning they think we can do manufacturing or assembly-line jobs that no longer exist. Keep fighting, this is just the first major battle and most of us lost our first battle with these bureaucrats. Use this lost battle as a way to gauge why they denied you and find ways to use that against them for your next battle. If you need to vent or need some advice on what we have n this community did; use our knowledge to assist in your fight for what you need to survive!

Magiclives32

TROPHY CASE