I was recently diagnosed with RRMS and my neurologist recommended me to start treatment as soon as possible and recommended Ocrevus.
I started treatment in Nov. 2023, and feel better but I am worried about my immune system being suppressed as my line of work requires me to travel a lot.
He is recommending me to be on Ocrevus hopefully if it goes well for 7-10 yrs.
Would this treatment really help me to prevent progression of MS?
I’m worried of how MS is going to affect me work and personal life.
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MeloLeo
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Research both MS and Ocrevus but only on legitimate websites, like official MS sites. Don't do random internet searches that want to give you miracle cures or "natural" remedies, because there aren't any. Ocrevus is currently the best drug out there, but I want to say it only has a 60% success rate.
If you've been diagnosed with RRMS, then I'm assuming that you're already having some issues. Those will continue in one form or another, and each time you have an exacerbation you will develop new problems and a worsening of the current ones. If you develop new issues that last more than 24 hours and aren't directly related to illness, activity, etc., contact your doctor immediately. Heavy doses of steroids can help stop the exacerbation in its tracks but come with their own side effects.
There's no way to determine the progression, because MS affects all of us differently. You may never be any worse physically than you are today. You could also be significantly worse in 6 months. By looking back to the time period when you first began having MS symptoms you may be able to get a vague idea of how your form of it will develop. Since you're still working and haven't mentioned any serious problems, it's possible that your MS is moving slowly.
Immunosuppression is a serious issue and one that needs to be discussed indepth with your doctors, preferably after you've researched the illness and drugs a bit more. For now, I'd wear a mask every time I'm out in public, avoid visibly ill people, and spend as little time as possible in close quarters with others . You're going to be caught between a rock and a hard place, so just learn as much as you can about all of it.
Welcome to the club that none of us wanted to join!
It's so nice to know I'm not the only one who worries about this. I've been on Ocrevus for about two years. I don't go very many places other than doctor appointments, but I've been wearing a mask and so far, so good (knock on wood).
Your situation is different because you need to spend time in airports or on planes packed with a lot of people. My doctor told me to get my flu and covid vaccinations, live my life, and call him if I get sick. If you get Paxlovid early enough when you get Covid, or the flu with Tamiflu, you may not feel great but you probably won't wind up in the hospital. That takes care of two potential problems, anyway.
In really crowded places, a fitted N95 would be a good idea if you can stand it. Plus try to get enough sleep, eat a healthy diet, exercise, try not to get stressed, all that good stuff that you've heard a million times.
A lot of people get MS and are able to keep working at their jobs, and you may love your job and want to stay there. If that makes you happy, great.
But if you talk to your doctor and are still concerned... it wouldn't hurt, just in the back of your mind, to think about other jobs you might want to do someday that involve less travel. Keep an eye out for other opportunities, etc., and just file them away in your brain in case you decide you want to make a change due to immunosuppression, or even if you find that travel tires you out.
You obviously want to keep your doctor appointments, get lab work done when you're supposed to, etc. One piece of advice I see a lot on this site that I agree with, is to consider seeing a neurologist who is an MS specialist. Most doctors seem fine when things are going well, but it's bad to have problems and suddenly realize your doctor is out of his/her depth.
Everyone is different, but generally I think Ocrevus has been good for me. I do think that if you have to be diagnosed with MS, this is an excellent time. I was your age when I was diagnosed 22 years ago, and there were only four drugs to choose from - and all of which had to be self-injected! Now there are more therapies than you can shake a stick at, so if Ocrevus doesn't work out, you have a ton of choices.
I wish you the very best. I hope you'll come back often and let us know how you're doing!
Welcome! I say no worries, live your life! Do you usually get sick with your job? Sleep, nutrition and maybe vitamin D level monitoring could help. Ocrevus is a great drug for preventing new damage. For MS issues you have that may affect your life, you can search this site for specific issues or symptoms and see ideas on how to navigate those. MSAA's website is a great resource for leaning more about MS.
During my time on Ocrevus, I caught many things my kids had. I cared for them while sick, so my sleep wasn't a priority, and I recovered more slowly than my husband (who caught the same crap and was not on Ocrevus). If you find that you are staying sick all the time, then that's a good time to have a chat with your neuro.
Thank you, kdali for your response and info to look up. Surprisingly with all my work travel my immune system is very strong before my diagnosis of MS.
The only times I would get sick, it would be due to stress and I would get strep throat. I’ve been traveling for work for over 9 years. I’ve only gotten sick 3 times with Strep Throat.
I have started taking Vitamin D subscribed by my neuro and every morning I take Emergency.
I haven’t traveled for work since my diagnosis in Oct. and grateful for my employer to be understanding while navigating my life with MS.
I will start traveling after the new year and started stocking up on N95 masks, hand sanitizer, just like when the pandemic was happening.
Your best defense is to wash your hands, wash your hands. Wash your hands. Be careful not to touch door handles with your bare hands. During the flu season try to stay out of crowded stores, malls etc. You might want to add a viramin B complex to your daily routine. I was diagnosed 19 yrs ago & very seldom get sick because I take the above precautions. I was on Ocrevus for 2 years but unfortunately I had problems with it. Do your best to not stress as it can be your worst enemy, not only with MS but your health in general. Remember that everyone with MS is different, some solutions work for some people but not all so don't be discouraged & keep trying. Glad you found this site.
Get tested before you freak out over being immunocompromised. I am blessed that I have probably got the most renowned neurologist in the world and when I asked about taking the Covid booster he said “ You’ve already been vaccinated right? Yes. Then why would you take a booster? My point is this. I haven’t had a cold in over 20 years. Make well informed decisions just don’t become the person riding down the road in your car wearing a mask. As I’m sure you’ve heard it’s not a cookie cutter disease. You have to make your own decisions based on what you know! You will be fine and welcome to the club of people who have a disease most people know nothing about. Merry Christmas!
Its a good treatment! And should be every Neuros goal! Although no DMT (Disease Modifying Treatment) can stop MS. We can only hope it will slow it down! 🙂 Then there are ppl that are never affected again! 🙂 🤗💕🌠🎄
Preventing progression is what it's all about. Any new lesions can lead to new disabilities down the line. I had a lot of damage at time of diagnosis and got a little more over the first 2 years while on 2 different DMTs. Then I went on an Ocrevus clinical trial in 2016 and have been on it ever since. I haven't gotten any new lesions since then. I don't get sick often either. Got Covid from my husband twice and once after flying across the US (I should have wore a mask!). I was pretty sick for a couple weeks each time but not sick enough to be hospitalized.
I still work full time as a nurse and go about my usual life; church on Sundays, grocery store, dine out etc. I don't wear a mask while doing any of these things but will anytime I am making my way through a busy airport again.
My biggest regret is not keeping up with exercising at the level I could when first diagnosed. I know I would have better function if I had. I am trying to regain some of what I lost through exercises I learned from physi al therapy but it is slow going. I would suggest seeing a physical therapist to find out what your lesions are most likely to impair, even if you don't already have impairment, and get exercises that can help.
Then of course, the other things for good general health such as a healthy diet and sleep hygiene. Managing other illnesses such as diabetes, high blood pressure, etc is important. Don't smoke and drink alcohol in moderation.
Welcome to the group. I don't have much to add that others haven't already mentioned. Just keep in mind that MS can affect you not only physically but mentally as well. I had to retire about 4 years early because of cognitive and short term memory issues along with some extreme fatigue. Keep a hand written journal to track how your feeling and anything that pops up or into your head that you want to discuss with your MS team later.
Hi and welcome! Being newly diagnosed with MS is a big life changing event! I was diagnosed in 2019 and started on Rituximab, which is similar to ocrevus.
I’m a nurse, so I work with sick people all the time! I even worked during the bad Covid times. I was really worried at first, but my dr just said standard precautions. He also mentioned that I was mainly at risk for bacterial infections, but my immune system would still be able to fight viral infections 🤷♀️. I’ve been doing fine and just got sick a lot when my little started preschool (probably would’ve happened anyway 🥴).
As others have said, MS is different for everyone, but do your best to take care of yourself (diet, exercise, sleep and following dr recommendations). It really does make a difference! And keep living your life ❤️
MS is a disease that most people don’t understand. I hope that you will get a good support structure around you. MSAA is a great place to start and it looks like you’re doing that. As long as you have the ability to work then do it! I am unable to work but applaud those that do, You are blessed that you were diagnosed when you were. My sisters were diagnosed before me. They are twins so there was a 30% chance the other twin would get it and she did. I the youngest only had a 5% chance.. I am really hard headed so that’s probably the reason I waited go long before getting an mri so by that point I already had 75 lesions that had grouped together to become 3 black holes. I listened to others more than myself. I’m unable to work but live a good life. Work as long as you can but know that It will become more challenging at some point just don’t let it get you down and listen to what you’re body is telling you: DMTs are relatively new and can stop or slow down progression. I take Tysabri monthly so I’m not an ovrevus specialist I just know that you have been diagnosed soon enough that you’re still able to work. Do not get down when at some point you can’t. Know this. People will not understand and will hurt your feelings if you let them. It’s not their fault they don’t know what they don’t know. Make your health number 1 priority make the most of every day and please stay connected to the right people. I will pray for you to have success and be happy, Ask questions and study this disease, It will equip you to deal with new symptoms. What sustains me is my relationship with God. Remember you don’t have to look to far to realize it could be much worse!
One more thing... make sure you sign up for the Ocrevus copay program. It covers pretty much all of my annual insurance deductible. I get one of my infusions in mid January, that way anything else I need through the year is already covered. I had a hysterectomy in 2019 and didn't have to pay anything out of pocket because my deductible had already been met.
I actually did sign up for the Ocrevus co-pay program. Thank you for the advice to have my infusions in Mid to late January to have my deductible fully covered and all remainder medical costs covered for the remainder of the year.
As said, MS is different for everyone. It is also terrifying for everyone at the time of diagnosis. I have never been on Ocrevus, but I thought you might appreciate hearing from one of the "lucky" ones. I was diagnosed in 1985 and kept working at a fairly physical job until 2003, at which point I retired and did administrative work for my husband (which was very stressful!!!) until 2010. I don't know the stats, but this could be you, too! I was told there was nothing I could do, but being strongly into preventative I started exercising anyway. Now my neurologist says that has a lot to do with how well I am doing. It is still a balancing act, how much exercise is enough and how much is too much, but it is doable. I really wish all the lovely people here had been told early on to exercise, so I am telling you now. As Mark1499 says, keep working, and as others say, take normal precautions and as hairbrain4 says, wash your hands.... It sounds like Ocrevus has helped a lot of people. Good luck!
The effect of MS is variable and may be very minor. My Neurologist said that even though I have MS it does not mean that my immune system is suppressed.
a lot of good advice given. Stress, sickness and heat are what we should avoid. One thing that I know that helps me, rest.
Rest, not only when you are tired, but when you are able to just rest for what’s coming.
No point in Standing when you can sit while waiting. Conserve your energy and drink plenty of water. Staying hydrated has helped me a lot. It’s become a better habit, especially when getting treatment with ocrevus, hydration and rest is key to a good infusion.
Everyone before me has summed up the highlights of living with MS. I too worked in healthcare ( diagnosed in 2001) forced to retire in 2021.. and like many folks said I was the sickest when my Littles were in preschool.. they have since graduated from college 😁 the one little tidbit of information I wanted to share with you was the advice my neurologist gave me in the very beginning. He said listen to your body when you are tired.. try to rest. I wish I had discovered how much better the right exercise made me feel.. best of luck
Hi, remember everyone is different and I went about 12 years enjoying life regularly with a few relapses that did not greatly affect my life. A stressful event changed everything for me, however, hopefully you will live life mostly on a regular basis, there are people who have. I wish you the best.
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