Hello, I've had MS for 28 years. I've been on Ocrevus for the last five years with no MRI progression (yeah!). Unfortunately because of a 2 year gynecological infection (associated with O) that isn't going away, I'm stopping Ocrevus. I see my neurologist for my 6 mnth appt on Monday. Wondering what my next option for a DMT might be? Thoughts? I've been on less effective DMTs years ago which I don't want to go back on (e.g., Rebif, Copaxone, Tecfidera). Also relapsed on Aubagio right before I went on Ocrevus. Also been on Gilenya (wiped out wbcs dramatically). Wondering what people are taking? Lemtrada, Tysabri, Mavenclad? Others? Or, do I just stop DMTs (but I am fearful of having relapses). I'll be 60 next month. Just wondered what you think? I'm open to any ideas or perspectives. Thank you, Elizabeth
UPDATE - I had my appointment with my neurologist this morning. I feel like it went well. I had notes ready for this meeting - many of them based on what you all shared with me in your posts (thank you!! 😊). For now, we are going to monitor my CD 19 (b cells). When they come up to "low normal" level, we'll do any MRI. He said that it is rare for someone to have a relapse during the year after they stop Ocrevus (my last infusion was in February 2024). Apparently, Ocrevus makes the b-cells less "angry" and less likely to trigger MS activity. Because I have another auto immune condition (eosinophilic fasciitis - I'm on methotrexate for it), he feels that I should not be on one of the high efficacy DMTs (e.g., mavenclad or lemtrada). He suggested Aubagio, or perhaps Tecfidera - to be started when my B cells are low normal. I THINK this is a good plan? My neuro seems to be careful, consider the whole picture, and seems to stay up on current research. Thank you for listening. I'm open to any thoughts on what I posted here. Have a good day, Elizabeth
Written by
Elizt3
To view profiles and participate in discussions please or .
Hello, Elizt3 . You have brought up many of the questions and concerns that I have. I to, am in my sixties, and like you, I have not had any disease progression since being on a DMT (Copaxone, Tecfidera, Ocrevus). I have PPms, so I am certain that I would not be able to go on any DMT if I discontinue Ocrevus. So much to think about. I wish you the best in any decision that you make. Please let us know how your neurologist appointment goes. My neurologist appointment is scheduled for the middle of January. Be well
I posted before I thought of searching prior posts. I’ll definitely take a look to see what other posts have to say about this type of situation. Thank you 😊
Hi Elizt3. There have been a number of very interesting posts asking the very same thing. There are a lot of different opinions out there regarding decisions about either changing DMT's or stopping DMTs. Talk to your Neurologist about it. Do some research on the topic.
I can share with you the decision I made. I have also had M.S. for close to 30 years. During that time, I took Avonex, Rebif, Copaxone, Tecfidera, Vumerity and Kesimpta. Over the past several years, my MRI's have been stable. I've had a couple of flare ups, but they weren't severe enough to treat with Solu-Medrol. I did not do well on my last DMT, and at 64, decided to stop altogether.
I realize that stopping is not for everyone. Like you, I was nervous about stopping. But after a long discussion with my Neuro and lots of research on the subject, I felt that for me, it was the right choice. It is a tough call to make. I hope you find the answers you are looking for. Be well and take care. 🤗
I have no idea what DMT you could go on 😞 the only 4 I know of is the copaxone (was on it, but had disease progression which got me on ocrevus), tysabri (couldn't take because high JCV antibody titre), ocrevus (duh 🤷♀️ lol), and kesimpta (an off-shoot to ocrevus). Didn't want to continue on kesimpta as I'd had an epileptic seizure during the 1st few months of being on it, so back to ocrevus I went.Have a look on this website for different DMTs you could take. It's a UK MS charity. There's also a tool on there to help you with deciding which one you can start.
I have only used Rituxan and I haven’t had any changes in my MRIs. I have SPMS and there has been some progression although I firmly believe that it’s much slower than it would have been had I not been getting the infusions. I turned 70 this year and will continue with my treatment plan. You might want to ask your neurologist if Rituxan might be an option. It’s very similar to Ocrevus although I don’t believe that it has the same side effects. I wish you the very best to find what will be the most beneficial for you.
I’ve had PPMS since 2017. I immediately started on Okrevus and was on it for four years. I was rushed to the hospital and diagnosed with esophagitis, gastroenteritis, and ulcerative colitis. My immune system was shot! Then I had three separate episodes with C-Diff. All this about took me out. Since then I’ve been forced to to stop Ocrevous and start monthly infusions of IvIg for my immune system. I’m still in and out of the hospital at least twice/yr for similar issues. This all started when I was I was 61 and I’m now 66. I’ve been completely off of DMTs for almost 2 years and am still on IvIg every month and it looks like I will continue for the rest of my life. I need to add that after stopping Okrevus I’ve felt much better than with it. I’m not trying to sway any of you in any way. I’m simply speaking my story.
I will be 63 in a month and within 6 months I just switched from Ocrevus to Kesimpta talk to your neurologist he can recommend the appropriate dmt for you good luck
I had to stop Ocervus because I was having to many uti's the uti's started after being on it for several yrs. I use to be on tysabri took for several yrs. had to come off because of jvc virus but loved them both. I now on steriods 3 days in a row then 1 mo next month 1 then next month 3 for 3 days then repeats. I am 73.
I pray what ever you choose It works great for you🌹
Hello Elizt3, I just turned 70 and have been taking Avonex as faithfully as I can, but have had two new brain lesions. I currently finished three steroid infusions this week to calm things down. I've tried Aubagio, but developed neuropathy. I also suggest talking with your neurologist, but carefully researching the symptoms of the suggested drugs. I've had other drugs recommended to me, but some have felt too intense. I don't recommend going off of a drug since MS continues to be active in our sixties and beyond. Wishing you all the best in making this important decision, keep asking questions, and please let us know how things work out. 🙏
I was on Tysabri for a little over 10 years. I had good experience with it. I had to go off of it because of my chance for PML increased due to being JCV positive (several blood tests in a row) and my JCV numbers increased to over 1, and I had been on it so long. My Doctor switched me to Kesimpta. I have no issues with it. It is so easy, one injection a month and do it yourself at home. They call me for my delivery date at home. I never had a bad reaction to Tysabri, and I got worn out due to the infusion was one hour and I had a one hour drive each way. I was still working at the time.
thank you for sharing your experiences. i really appreciate it. i'm getting ready for my neuro appointment tomorrow morning and added some questions based on what you are posting here. 😊
hi Elizabeth , I’m sorry I’m late in replying. I’ve had a lot of company here. I’m the oldest person on this thread. I’m 77. I had been on a O for seven years. I recently went off of it because of a very bad bout with Covid, which put me in the ICU and also colitis which I’m guessing my that’s another side effect from O and UTI’s . I’m not on any DMT‘s right now and I understand how scary that is. It was working good for me, but just not worth the side effects, and especially affecting my immune system. Before I was on copaxone for about five years. that caused me to get a lot of welts. my neurologist switched me to O which I think was a good at the time. There is a new drug coming out that my neurologist thinks might be a good DMT for me, once it gets approved. I think it’s probably going to be 6 or 7 months before it’s approved. The name of the drug is tolebrutinib. You can read about it online.
I do have a lot of anxiety about being off of DMT‘s. The only difference I’ve felt is my memory is worse, however I’m getting old so it’s hard to tell what’s what. I’d be interested in knowing what your neuro had to say at your last appointment. I know we need a crystal ball when we have MS. It’s Hard to know what choice to make. I’m wishing you all the best. Linda.
Thank you for your message. I appreciate it. I’m adding this new future med to my list for my appointment tomorrow morning.
I agree. It’s a big gamble!! What to do? Hard to predict the benefits vs drawbacks of these meds.
So far I haven’t regretted being on dmts (six of them). I appreciate that I’m still able to walk and work after 28 years. By my age, my mom was a quadriplegic -she fought the best she could with no meds available. I’ve decided to take advantage of available meds - I’m sure she would have wanted me to.
We are all so different! I was on Copaxone for about 5 years, but due to my build and lipoatrophy, I ran out of injection areas. I talked with my neurologist at the time and with my husband and decided to stop any DMTs. I’m now 65 and don’t regret stopping, but I have very slow progression and have not had any relapses. I may have felt differently if I’d been progressing quickly or had more relapses. I’m so relieved not to deal with insurance, specialty pharmacies, nor pharmaceutical companies.
Yes, that must be a relief! I wish you the best. (Btw, I experienced notable lipoatrophy with copaxone too - 20 years ago, they didn’t know what to make of it)
I’m 67 and have been off of DMT’s for 3 years now. Ocrevus has negatively affected my immune system and I got very sick. My immune system is still a mess even though m last infusion was 3 years ago. The neuro I go to now is one of the authors of the DISCO study that looked at discontinuing DMT’s in older patients. I meet the criteria to successfully discontinue so I have for now. It could change if I worsen. I’ve posted the link to the study in case you are interested There have been a couple of others with similar results But there are also some well-known, well-respected MS neuro’s that don’t agree with the idea of discontinuing DMT’s.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
More on vaccines and Ocrevus
Changing to Ocrevus. 
