I’ve posted before about my difficult experience with Ocrevus the last 2 years I was on it. I wanted to give you all an update in case it helps someone else.
My last infusion was Dec. 2021. I’m currently not taking a DMT hence the title of this post. My neuro is part of a large MS research group and was a co-author on a small study that found that older people meeting certain criteria generally remain relapse free without DMT’s. There are a few other similar small studies with the same conclusion. I meet the criteria so we are just going to monitor going forward. My next MRI is in March. I know it’s a risk but after what Ocrevus did to me, I’m not willing to take any more of the B cell depleters. So that rules out most of the high efficacy drugs anyways.
I have some B cells back so I am creating antibodies when I get a vaccine unlike what happened during my years in Ocrevus. My health is still fragile so we will test my immunoglobulins to see if there has been any improvement there. My family recently passed around a stomach virus. Most recovered in a couple of days but it took me a week. That tells me my immune system is still not where I need it to be. Grrrr…
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Raingrrl
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Praying that your neuro and the new studies will help you continue to do well without Ocrevus. I started on Aubagio after being on Avonex for 25 years too. So, far I am enjoying Aubagio, a T&B cell immune suppressor as a daily pill. Hoping my new MRI in 2024 shows no new lesions too! 😇🙏🙂🤞😽👍
I'm currently "naked," too. There was a new lesion on my last MRI, though the doctor wasn't sure it was MS-related. I'm very concerned about immunosuppressants, so I'm considering the choices he offered, which were Mayzent, Aubagio, and Tecfidera, since I won't inject again. I think I just don't want to do anything and see how things go. That may not be a good option, so I pray a lot!
Good thinking! I dread dealing with pharmacies, doctor's offices, and drug companies again. It's been blissful not having to deal with those things all the time.
I'm not opposed to DMT's, but I'm also doing fine without them. At 59, I've been dealing with this since at least 1980, long before they'd created any drugs for it. I tried the first 2 half-doses of Ocrevus several years ago and wound up with the scary complications and months of general sickness that I couldn't shake off. My neuro was okay with me dropping it, but he did say that he didn't feel that any others were suitable for me at this stage. Maybe if I'd had drugs at a much younger age things might be different now, but I'm okay where I am.
Good point, I hadn't thought of this. I imagine there will come a time I will have to stop O and hopefully this will turn out to be true for me. Fortunately, my IgG level remains good and don't really have side effects from O. Rarely get infections but it does seem to take a few weeks to get over Covid when I get it. Although, I know there are "healthy" people who get knocked down pretty hard with it too.
I hope Mavenclad does the job for you and is the last DMT you need! Now, we just wait for remyelinating therapies to come 😊
Gavin has talked about the possibility that Ocrevus could work and should be trialed in a 2yr terminating dosing, just like Mavenclad. Unfortunately the drug maker did not want to do this trial, shocking right 🤣 People carry on for a decade now without issue, so I hope you do well on it for as long as you need a DMT 🙏
Thank you! 🥰 It's been amazing so far! My last relapse/new lesion was 3yrs ago this month 😱 This is the longest I've ever been ok 🥲 Whatever happens now, it's been worth it already 🥰🙏🎉 Well, I can't wait for the repair studies, so I've done a deep dive into ketosis therapy land and this is where I'll be until CleneNano gives me some of their brain miracle regrow. Of course I'm also trying to do meaningful exercise, making sleep a priority, and need to get on learning a new language. Sie geht es? 😜
Is that German you're learning? Sounds like it may be time for a trip to Europe soon 😊
So happy Mavenclad is working for you, what a relief! I have considered asking to stretch out the dosing of Ocrevus since my CD 19 numbers were always less than 0.5, even when there was a delay in treatment when I moved. The only thing preventing me is I always get an uptick of fatigue 2-3 weeks before my infusion. I always forget about it but then when it hits I realize, oh yeah, it is time for my infusion. Maybe with changes I am making this year it won't be so much in July when I get my next infusion.
I have been making better efforts at exercise and diet as well as sleep. I see small improvements in ability to do some of the exercises but it varies day to day. I keep doing them even on the days my leg doesn't want to listen. For sleep I have cut out caffeine almost completely, small amounts maybe once a week if that. I am taking a holiday from Gabapentin which I am sure is negatively affecting sleep. The good news is I haven't had any vertigo yet since starting the holiday over a week ago. I think I will stay off until vertigo returns (🤞it doesn't return). When I saw a sleep doctor a couple years ago he suggested cutting down on the dose as it could be making fatigue worse, although I only take 300-400mg at HS. I was still having vertigo off and on so didn't cut back until now (other than when I was sick with Covid and didn't take for a week)
Have been back on track with intermittent fasting for about a week with an 8 hour eating period. Will get more serious about keto diet once we have eaten all the higher carb foods in the house. I already warned my husband 😁 I might try fasting all day on Fridays too.
It should be! I learn a little and then quit 🫣 I took a solo trip once, it was lovely! Someday when the kids are bigger I'll return.
Huge relief, I was nervous and disenchanted by previous fails. Yes, crap gap people would not appreciate stopping! 😵💫 I hope it does work out for you! Lifestyle helps, but the downside is figuring out what exactly that means for each person. I think you are correct to keep showing up and then do the amount that your body allows that day, and eventually it adds up.
Aww, that's a huge win!! Vertigo is the pits. Thats a solid plan! My house is filled with other people's favorites, but I have found the consistently higher level of ketones makes me not care or want any of it. It's weird, but welcome 🎉 I also found I need to eat more often sometimes, so I'm just rolling with it. I prefer a shorter window and fewer dishes to clean 🤣
kdali …my neuro said there is some evidence that after being on Ocrevus for years without the return of B cells, it does act as a reboot. I hope that proves true for me. But who knows.. 🤷🏻♀️
What you have had knocked down is a lot more than what mavenclad does, and that one works 60% of the time. I'm putting money on that you are good to go and no more drama!
Hi Raingrrl. Sounds like you and I are on very similar paths. I tried Kesimpta, a b-cell depleter very similar to O, and after six months of misery, stopped it. That was one year ago. I had been reading quite a bit about folks of a certain age with years of stable MRI's being able to stop DMTs and discussed it with my neuro. She was familiar with the studies as well and agreed to let me stop given my age (64). I had my latest MRIs in November and all was still stable (yay!!!) I have to admit, I was nervous about stopping but I felt that it was the right decision for me. I can also tell you that one year off all DMTs and I feel better than I have in a long time. Yes, I agree it's a risk and each of us has to decide what is best for us, and it sounds like you have made the same choice I have. Hopefully you will have a good report next month with your next MRIs. Keep us posted.
Funny you mention the stomach bug you had. I also got hit with it last month and it took three weeks before I felt back to myself. It really kicked my butt. Things that healthy people get over in three days, takes us a lot longer. Glad you're feeling better now. Take care and best of luck with your next MRI! 🤗
It is good to hear your story. I am off DMT since March and still nervous. I also feel better, even though it was just Avonex. I am 68. I have more energy. It is a difficult, personal decision.
Yes it is a tough decision. I agonized for a few months over it and changed my mind several times before quitting, but at the end of the day, it felt right for me to stop. I was really nervous when I went for my latest MRI in November, and was so happy and relieved when I got the report all was stable. 🤗
I’m 66. My MRI last year was stable and I had been off of Ocrevus for 15 months. One of the things I like about my current neuro is he listens and is willing to talk about the negatives of the high efficacy DMT’s. My previous neuro has accepted a lot of $$ from the drug companies so it’s hard to believe she has her patients best interests at heart. She convinced me to stay on Ocrevus when it was clear my immune system was negatively impacted.
This is very informative for many of us who might be behind you by a couple of years. Ocrevus keeps depleting my immune system and as I get older, I know I might have to make similar decisions.
For the time being, I'm very happy that Ocrevus is doing its job in blocking relapse and avoiding disease progression.
I was on Avonex for about a year (20yrs ago) and stopped taking it on my own decision. It was just too depressing for me at the time and I wanted to enjoy my life (in my 20s).
I've been fortunately symptom free for 20yrs but now I feel like there are new lesions as I feel numbness in both legs and recent MRIs show more spots. I was recommended to start Kesimpta but thought, maybe I can do this for a year and stop like I did 20yrs ago with the Avonex.
Not to mention, I'm also afraid of the side effects especially the potential JCVirus but figured this DMT could halt further numbness. It is very uncomfortable and never experienced anything like this.
But I really wanted to thank you for your post and hope you can continue your journey with no DMT.
Glad you are doing well. Can you share any of the criteria that are used to decide if an older person with MS might go off of a DMT? You said you met the criteria in your post - just wonder what they might be?
According to the info I have read, including articles in back issues of MSAA magazines, the general criteria says that patients in their mid 50's and older who have had no new recent activity and stable MRI's for several years, can consider stopping DMT. Of course, it's recommended to speak to your neurologist, but in the end it's up to each person to decide what is best for them. I met the criteria at 64, and have been off DMT for one year now.🙂
I was on DMT’s from 1999 onward too. It admittedly makes me feel vulnerable to be off of them. But so does being on a B cell depleter and watching my immune system tank. It’s a Solomon’s choice in my situation. The criteria my neuro looked at is: my age, no recent relapse for at least 5 years and no recent new MRI scan lesions for at least 3 years.
Here’s a link to an article about the study done at the MS research center where I’m now treated: mscenter.org/article/result...
I haven’t had new activity in five years either, but I’ve been on O for those five years. My neurologist is thinking Woo evaluate this issue when I’m in my 60s.
I just took my last infusion of Ocrevus! But now have to figure something else out, that's not a b cell depleter that I can take..I wish you tons of luck 🤗💕🌠
Raingrrl, thank you for your post and all the informative replies. I have been on O for 6 years. I just turned 77. I am in constant fear of getting sick, as it takes me so long to recover. I know there are no studies regarding O for my age group. I really want to quit all DMTs but I’m afraid to. My neuro has encouraged me to stay on O. I was previously on copaxone for 6 years. I just don’t know what to do???
It’s a tough choice for sure. The disagreement about what to do with older MS patients amongst neuro’s doesn’t help. They don’t typically study anyone over 55 so there is a lack of factual info. I’m 66.
Linda3579 … Ocrevus caused my immunoglobulins to tank. (Those are your antibodies.) They dropped to a dangerous level called hypogammaglobulinemia. My neuro at the time kept insisting the levels were not concerning even though I kept getting weird infections like 6 weeks of pink eye in both eyes. 🤬 Subsequently, in year 5 on Ocrevus, I developed 2 rare internal infections that months of antibiotics didn’t cure. (That includes over 3 months of daily IV powerful antibiotics.) Ultimately, I underwent life-saving major surgery.
WOW!! That must have been so scary. Thank goodness you survived all that. I really don’t feel good about O, but my neuro keeps encouraging me to continue it. When I do get sick it takes me a month to get better. I have an MRI in two weeks. I think I will decide after that. Thank you for taking the time to tell me your story. 💕
You’re welcome. It was scary for sure. Especially since I struggled to get good medical help that wasn’t just full of themselves and that would listen to me. Most people seem to do well on Ocrevus but there are some of us who don’t. I’m in a Facebook group of people who have had issues with Ocrevus. No one with my same story though
Keep an eye on your immune system and be careful if your immunoglobulins get really low. (It’s a simple blood test to monitor them.) You don’t have a well equipped immune system to fight off infections when your antibodies get too low.
Raingirl, I just read your very informative post! I was diagnosed in late 2007 and been on Copaxone exclusively. My exacerbations are maybe (1) every three years now; but bad days with fatigue can occur during extreme weather conditions. I have pondered discontinuing my DMT tx because my injection sites are so painful. Just like you, I have noticed that a sniffle can make me feel like I need an inhaler and bed rest for a week! Basically, I heal and “bounce back “ slower than a turtle walking . I will discuss my options at my next Neuro visit and monitor my health closely. Please keep me posted with your journey and blessings, 🙏 and prayers for continued stable health. NeeC
I was on Copaxone for my first 10 years after diagnosis. It kept my MS stable and I didn’t get sick either. The worst of it was injection site issues that took years to recover and 3 scary post injection reactions. At the time I started it, there were only 4 choices in DMTs.
Yes, our DMT’s are limited- and insurance obstacles (at times) are most frustrating. National MS Society will often ask if our community members would share their stories to present at legislators Sub Committees meetings. We’re better than years gone by; but more work needs to be done!
It’s scary for sure. I’ve been on DMT’s since my diagnosis in 1999. But I’ve done some research and my neuro supports it so here I am. My last Ocrevus infusion was Dec. 2021 and I seem to be doing ok. Feel free to DM me if you want to know more about what I’m doing to try and keep the MonSter at bay.
I woke up with Covid today. I’m feeling pretty awful. Not much sleep last night. My husband got it a couple of days ago.
Nervous about calling my doc as I’m not a fan of plaxovid. Has any one else on O had Covid? I’m really tempted to give up all DMTs. Like you Raingir, I got so tired of the copaxone welts.
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