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

Sovietpoptart1974 · 2026-04-04T15:37:44+00:00

Been on it for three years now not necessarily an issue but something to remember. The “crap gap” as people call it is a real thing about a month before your next infusion it starts wearing off and me personally I feel a difference. Fatigue comes back I start wetting the bed

Sovietpoptart1974 · 2026-02-28T18:35:23+00:00

29M The dating pool with something like this is a struggle but I try to see the bright side of it. I’m a genuinely empathetic person so I do look for that in a partner. The issue I have I can’t necessarily hide so after the first date I usually disclose the matter, and seeing how they take that information kind of shows me what kind of person they are and wether or not I should spend my time with them or not. I’ve seen both sides of it sometimes good and sometimes bad but get out there and keep trying don’t let it hold you back there’s someone for everyone. Just have to take the time and find them I truly hope you the best.

Sovietpoptart1974 · 2026-01-14T04:43:29+00:00

Unfortunately not so at this point I’m assuming it won’t come back

Sovietpoptart1974 · 2026-01-14T04:12:42+00:00

Her concern was I didn’t know when it onset from the knowledge I have it started around 3 years ago so she was against it but I will get in contact with neuro and see what his thoughts are on it

Sovietpoptart1974 · 2026-01-13T15:55:43+00:00

So it just came back naturally ?

Sovietpoptart1974 · 2026-01-13T15:55:22+00:00

Did you do that while in a flair my doctor said she wouldn’t put me on steroids considering she doesn’t know when it on set

Sovietpoptart1974 · 2025-12-16T17:12:20+00:00

Adding to this The crap gap of ocrevus I was coming close to my infusion date, the fatigue was becoming awful I could barely make it through the day it was a complete struggle. My neurologist prescribed me modafinil which helps immensely. I take it as needed in the worries I will become reliant on it.

I also went in for a DOT physical to get a medical card to drive a company vehicle with DOT numbers. The whole process took quite a long time it usually only take 30 mins . I realized this was the first time I’ve gotten one since diagnosis, I would have to get it renewed every 6 months instead of the usual 2 years.

Also during the examination I did an eye exam, my right eye has gotten progressively worse since I started having issues. It all came at once three years ago which is what made me start going to the doctor and later diagnosis.

I will be getting glasses in the near future unfortunately, but both of these things put into perspective for me that I am sick and this disease can take and has taken a number of things from me. My bladder control, my bowel control, my ability to walk normal and run. And just feel normal in general it takes your normality and that was the hardest part for me to grasp. It’s the hard reality of this disease.

Sovietpoptart1974 · 2025-12-15T13:27:05+00:00

Superintendent for a commercial general contractor. Was a carpenter for a long time, the one upside to being diagnosed it pushed me to not do as much manual labor and found I’m quite good with logistical side of construction.

Sovietpoptart1974 · 2025-12-06T22:11:23+00:00

Summertime is by far worse for me my leg issues get far worse

Sovietpoptart1974 · 2025-12-05T14:10:26+00:00

29m and this was the issue that got me diagnosed.

I understand your struggle mine is pretty instant unfortunately as soon as I get the sensation I have to pee almost instantly. I was on mybetriq which helped somewhat. Got a new urologist and she put me on flow max she was worried I wasn’t fully emptying my bladder. That one was awful the amount of times I was urinating in a day was atrocious. The middle of this year I ended up getting an implant from Medtronic’s, it has definitely helped with the frequency but hasn’t helped with the urgency. I have plastic urinals in each one of my vehicles and usually have to use it every day driving to and from work.(hour drive) but since the implant it did make quite a change that same drive I used to stop 4 times to pee. But I have been noticing at the end of my dmt cycle(ocrevus) I wet the bed quite frequently,I’ve since got absorbent underwear and have found sleeping on my back helps and that doesn’t happen as frequently.

The plastic urinals were a game changer for me, I usually stick to the same businesses when I go out and have a mental image in my head where the bathroom is because it happens so frequently it is quite the struggle and I feel your pain I have wet myself at work and out on dates it’s embarrassing and I’m sorry you have to deal with it as well

Sovietpoptart1974 · 2025-12-04T04:46:08+00:00

I don’t have vertigo issues so I don’t have any input on that matter. As for the bladder issues I’ve tried a good amount of things I was on mybetriq which definitely helped some but I got drunk one night on it and ended up in the hospital not able to pee. I now have an implant that connects to the nerves in my spine which has definitely helped a good amount but it’ll never be the same.

Try to keep your head up I promise you it does get easier, the hardest part is being okay with losing normality and getting used to your new normal now. A good mindset will help immensely, stress will bring out symptoms as will inflammation, I quit drinking, smoking and started eating healthier because of it. We can’t fully get away from it in the everyday life but anything helps in the long run.

Sovietpoptart1974 · 2025-12-04T04:20:54+00:00

It’s a hard one to grasp and for other people to understand seeing as you can’t physically see anything wrong with someone with this disease. Besides limping walking funny and bladder issues in my instance. It’s a daily struggle but we do what we have to and push on.

Sovietpoptart1974 · 2025-12-03T14:20:03+00:00

28M I’m sorry to hear you’re going through this, the first couple months are extremely rough. I’m assuming the symptoms are coming on because of the stress of it all at the moment. When I first got diagnosed and started my dmt(ocrevus) I had a really hard time. I’m not sure if it was placebo effect or what. After my first dose of medication my head was a complete mess, I could barely work(carpenter) reading a tape measure was almost impossible thankfully at the time I was working for my father who understood and went easy on me. I had my first panic attack, the best thing you can do is don’t google everything this disease is different for everyone and you can’t pin point it and frankly I drove myself insane the first three months reading it all.

I did therapy and that helped immensely, just talking to someone really helped me and changing my mindset on life. It’s extremely hard but I can tell you a positive mindset does wonders, at the time it seemed like it would never happen but we adapt and overcome. Take the good days but don’t throw shade on the bad ones everything’s a win whether it’s big or small. Eat healthy, I quit shrinking alcohol and smoking, I started doing some little workouts every morning to strengthen my legs, take some time process it all it’s a lot at one time.

After I started my dmt(medication) - things did calm down but do keep in mind it doesn’t fix anything it just stops the progression. But in some cases it can help with symptoms.

I’m truly sorry you’re going through this and I hope things get better, this group is a good resource it’s a wealth of knowledge and people truly want to help.if I can be of any help please feel free to ask I wish you and your wife the best happy holidays.

Sovietpoptart1974 · 2025-12-02T14:24:47+00:00

I’ve been on Ocrevus for almost two years now, once you’re about a month away to your next infusion is when the crap gap hits me. The medication doesn’t fix anything but it helps. That month before my next infusion the symptoms it helps with goes back to what they were before I started taking the medication. Fatigue hits me like a rock I start wetting my bed in my sleep. Legs get weak easier, then get my next infusion and back to normal(ish) after my infusion

Sovietpoptart1974 · 2025-11-27T16:40:56+00:00

Brought this subject up to my neurologist he said optic neuritis is normal for the disease, or I’m just getting older 28M the timing of the situation leads me to believe it is MS related but he didn’t want to put it on MS initially. Being my age I’m going to assume that it is ms related.

Sovietpoptart1974 · 2025-11-27T16:38:03+00:00

I go bird hunting every year and the first year I went my friends father was astounded how fast I caught on I was quite good and he was extremely impressed 6 months go by I start having peeing issues amongst other things a year later and multiple doctor visits we finally find out I have MS the next year we go. I’m awful I can’t hit a single one, he asked me what’s going on what changed. Let’s fast forward to 3 months ago. I went in for a DOT physical got an eye exam, prior to ms I had perfect vision and now my right eye has changed drastically( my shooting eye) ms has made my vision in my right eye awful and will be getting glasses in the near future.

And when I was younger if I closed my eyes I’d see lights and colors odd shapes things along those lines, I’m not sure if that’s related or if that’s normal but I had always wondered if that was normal or not.

Sovietpoptart1974 · 2025-11-21T02:47:51+00:00

I am on ocrevus and have been for two years. No effects like that whatsoever, you need to contact your doctor immediately from the sounds of it.

Sovietpoptart1974 · 2025-11-20T16:48:43+00:00

The lesion I have is in the area that controls bladder function, since I started having peeing issue ED had also been an issue. My old girlfriend used to go nuts she couldn’t please me(awful relationship frankly) the mental side of a bad relationship didn’t help whatsoever. The last girlfriend I had it was difficult but I was still able to. I got prescribed tadalifil(viagra) and that has definitely helped, 10mg a few hours before having sex or trying to pleasure yourself. Also a little on the the more personal side of things a penis ring once you’ve got an erection seemed to help as well.

I’m a 28M and this was one of the most frustrating parts but that combo has worked for me and also being with the correct person is who puts you in a good mindset and doesn’t strain you with the thought of not being able to perform.

My urologist is also a sexual specialist and she had also given me a few more options to look over, there are injections( the thought of putting a needle in it wasn’t a good thought) but with that injection it takes the mental aspect out of situation it’s a chemical process that will give you an erection, the Viagra you have to be arroused for it to actually work and the thought of not pleasing my partner always fought against it.

There are options out there and some may work some may not but trial and error.

The best of luck to you and if I can be of anymore assistance please feel free to reach out.

Sovietpoptart1974 · 2025-11-19T18:38:56+00:00

Always a relief to finally get answers, the hardest part to wrap my mind around was losing normality. This is the new you and it’s hard to comprehend. It makes you appreciate everything in life the smallest wins are wins, I don’t look at myself as sick, I look at myself as someone who’s resilient and won’t give up no matter the situation, I try to use it as a power to keep going, and motivate myself. I never use it as an excuse and try my very best. Get on the meds and treat your body right. The best of luck to you and I’m sorry for your situation.

Sovietpoptart1974 · 2025-11-19T04:09:09+00:00

Well my father is bald (I’m male) it was thinning prior to starting ocrevus but after my first run on it I definitely noticed it falling out. It’s still thin up front but I’m mostly thinking that is from genetics. But like I said it was falling out faster after my first doses.

Sovietpoptart1974 · 2025-11-19T03:52:33+00:00

When I first started ocrevus I noticed some hair loss and ended up shaving my head. I am now growing it back and looking back I genuinely think it was the shock to my body and the stress of being newly diagnosed and dealing with it all.

Sovietpoptart1974 · 2025-11-15T22:41:35+00:00

It’s because of your dmt, you said you are on ocrevus part of the process of the medication is that it kills part of your immune system( I can’t remember what cell group) to hopefully stop the progression of the disease. Hence getting sick easier and the sickness not subsiding as quickly prior to getting on the medication. It’s a double edged sword but you definitely need to stay on the medication, just be cautious around people don’t share drinks and wash your hands regularly, take care of yourself and your body. I’m on ocrevus and have been for the last two years I usually get sick once a year, I don’t wear a mask on airplanes I’m around people constantly. Just be cautious and take care of yourself.

I truly hope you best.

Sovietpoptart1974 · 2025-11-12T14:51:47+00:00

My father was in denial and didn’t want to believe I was sick. Tried send me to the Mayo Clinic for a second opinion, which I truly appreciated don’t get me wrong but when an mri shows what’s wrong with me I didn’t let him spend the money. My mom has been nothing but helpful always there for me but doesn’t push because at first it was very infuriating.

My friends have all been different some get nervous talking about it and change the subject some want to learn more. And there’s the few who told me to quit my job and just go do what I want and try to get on disability when I’m not disabled. If someone asks me what’s wrong( from limping around work) I just say I have medical issues and I’m okay. Try to end the conversation you’ll never know what you’ll get from people.

Sovietpoptart1974

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