I have been on Ocrevus since July 2020. My WBC has been chronically low, the last infusion was almost held but I was able to get them to do it despite my WBC being at 2.7 which is lower than their 2.9 threshold for infusions.
I have really not felt great, had 3 UTIs since Sept, Covid for a 2nd time and various other mild illnesses. I have a rather chronic low-grade fever, had an episode of acute resolving hepatitis which a cause was never determined (my infusion was held for a month to research possible relation).
I just feel like I'd rather risk it and not take any meds at this point. I had an episode in May 2018 with my vision which was never diagnoses & I quit persuing it. Another episode occurred starting in Dec 2019 which was worse. I was diagnosed April 2020. I have lesions on brain & spine but none new since starting Ocrevus.
I work full time and have full mobility. I just don't know if this medicine is worth it with the side effect....any of the medications for MS. Sure it will help to not become disabled but that's a big IF. I've been seeing a lot of studies being done with people doing treatment vs not doing treatment. Has anyone seen any resulting info from these studies?
I'd love to here other thoughts and opinions. I appreciate any info. Thank you.
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MoparMom
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It's a difficult decision. I sometimes wonder it myself. My Ms specialist tells me not worth chancing having an irreversible disability. I was also looking into kesimpta
I'm going to be odd man out here, I think. I wasn't diagnosed until 55, but I'd had consistent symptoms of MS since no later than age 15. It was a combination of bad doctors, no treatment (and therefore no need for a diagnosis), and no insurance. I did try Ocrevus, but I quit after my 2nd half-dose because of the significant increase in infections and illnesses. I was far enough along by that point that my neuro didn't argue, and he felt that none of the other drugs would do anything for me. I didn't feel that the risks were worth any possible help.
I've been on SSDI now for several years, but I'm still mostly independent. I can move around on my own inside the house, mow the yard with an automatic riding mower, and am able to drive locally (although I prefer not to). I have a large dog, small garden, and go into the cellar for my laundry. I do carry a cane in public, and I have a motorized wheelchair for trips to the mall.
Obviously, my MS has moved slowly over the years. Yes, it's negatively affected my private life since my teens, but I still walked a mile of hills to the school bus stop, went to trade school, worked full time until a few years ago, and raised a family. I had no choice but to adapt as I went along, because no one would acknowledge that something was wrong.
I do credit my childhood years for a big part of my health. Living in the country as my father's only son, I was always outside and very strong from hauling firewood and hay bales. Even if I'd been diagnosed earlier, there were no drugs for MS for most of my life, and I don't think I'm any worse for not having taken them. Given the complications and assorted pain meds that so many people take to combat the modern treatments, I think I've had an advantage.
If you're aware of the future possibilities and are okay with that, then I'd drop the drugs. Make sure your doctor is still willing to monitor you regularly with MRI's or treat you ASAP if you have a relapse. Let him know that you might consider Ocrevus or another drug in the future but that you need a break now.
My thought is that at nearly 60, most people without MS have frequent aches and pains and get tired more often than they used to. How much of what I'm dealing with can honestly be blamed on the MS, and how much is just that I'm getting old? 😀
Thank you very much for your kind & informative response. I am going to be 50 years old this year. I too credit my upbringing & my husband (in a strange way) for not babying me or allow me to complain too much. I grin & bear it most of the time but again, I am walking fine despite lesions on cervical & thoracic spine. I do wonder if my issues are related to other things & the docs just shrug because other than the vision issues or walking, how do they KNOW it's from the MS. I have arthritis and I'm at the change of life stage so who knows but I smile & carry on and stay busy which I think is best. I do my pre-infusion lab work at the end of this month & I see the doc on 3/1/23 so we'll see what transpires. Again thank you for your inspiring & realistic response.
MoparMom, it's Fancy59. I was on Ocrevus for about 6 years. Besides no increase in disability and no new lesions the Ocrevus dramatically helped my spacidity. My neurologist expressed his concern about me continuing the Ocrevus as I turned 63. My White blood count rebounded nicely and I was always feeling good and I like the help with my spacidity so I urged my neurologist to let me stay on Ocrevus. His concern was that as I aged over 60 that my immune system weakened with age and the Ocrevus might set me up for a severe infection.
I swear not 6 to 8 weeks after his warning We went to visit our daughter in Atlanta for a long weekend. While we were there Friday tonight I started feeling some of a hit Abdominal discomfort. We went home and talked and I felt some better. Spent the night Without any difficulties and the next morning we got up and visited and got breakfast together. We ate breakfast and talked and the last coherent thought I had was that I threw up my breakfast and after that I was gone. My husband and youngest son and daughter rushed me to the ER because I was talking out of my head in an obvious discomfort as I thrash the bell. I actually went to a small hospital 1st and as soon as they accessed my condition They rush me by ambulance to a larger hospital an hour northeast. Long story short I had developed 2 kidney stones which I never had before a UTI infection, partially collapsed along, and had a fever of 103. I spent 2 days in the ICU and I guess it was hit-or-miss if I was going to live or not because of my age, my MS, in the seriousness of my illness.
Well obviously I pulled through but I got to spend 12 more days in the hospital in Atlanta before they discharged me to go to a rehab hospital close to home in Lexington Kentucky. The seriousness of the illness and infection set my MS over the deep end and I was basically a paraplegic as nothing at all worked or moved for me as it should. It took me months to recover and get my strength back to 60 or 70%.
I understand because I'm also torn about worrying what will happen if I take no DMT. My disability is already very acute and mobility isn't good and if I increase my disability at all I'll be in the wheelchair full time and find myself in a nursing home which I don't know if I could stand.
With your low white blood count and you're continual bouts of UTIs, as well as other serious infections, I would be very cautious about continuing on Ocrevus based on my experience. Talk to your neurologist and hear his opinion out and then decide if you think it's worth the risk to continue if he/she is against ìt. Remember you are the best advocate for your health but don't disregard the doctor's advice because as I found out the hard way they really do know what they're talking about. Together we are stronger. Take care and let me know what you decide. Fancy59.
hi. It’s great that you are having full mobility! I didn’t know what was happening and put off drs./treatment . It was wrong cause now disabled and can’t walk. I don’t think no tretment is good. I am on Kesimpta I could not take Ocrevus because I have the breast cancer gene. My mom and sister had cancer. My cousin (who also has ms) is on the Ocrevus. She’s sick constantly. Maybe there a connection with illness and Ocrevus in some people. Please change medicine. Don’t stop. Don’t get disabled like me! It’s not fun! Good wishes with whatever you choose to do!
How was your mobility at diagnosis? I was 44 when the overt symptoms began & 46 at diagnosis. I'll be 50 this year. I have mild symptoms but nothing disabling. I tried Glatimer Acetate & its brand counterpart & had reactions to both. Being dx at the beginnings of Covid really threw a wrench in things & Cleveland Clinic as a 2nd opinion was the one who got the ball rolling with Ocrevus since I had lesions on both brain & spinal areas. I do lab work end of this month & see doc on 3/1 so we'll see what transpires. Thank you again for taking the time to respond & help, it's greatly appreciated.
I was already having trouble walking. I have lesions on my brain, neck, and spine. I was 44. I am now 46. This is hard. I am glad you are seeing dr soon! I am seeing specialist in April and dr in May. I had to wait long to get to see a specialist He is an ms specialist. It’s bad :(. But I will survive! Like the Gloria Gaynor (sp) song. I have to laugh and smile cause it’s better than crying! 🙂. I wish you the best in everything!
i get that it's a hard decision. i was diagnosed at 48 and no symptoms were visible for the first 6 years but i would definitely recommend medication. there are other strong meds that do not have the side effects of ocrevus. you may want to talk to a urologist or a neuro urologist about the UTIs. you have options. I believe medication (and diet changes) slowed down my progression.
hey Xvettech when i let go of flour and sugar that helped a LOT. also dairy is very inflammatory so i use oat milk and 365 non dairy mozzarella from whole foods instead. for protein i eat seeds and peanut butter.
if you get rid of ensure, you might feel significantly better. sugar and dairy are very inflammatory. when i stopped dairy i was much less stiff. And there are other ways to get vitamins. Also sometimes i use honey instead of sugar. it's still sweet and easier on the body than artificial sweetners.
so sorry to hear that it's so severe so quickly. i understand the wheel chair thing. i use one for longer distances. it sucks. i want to be independent but it's better than staying home for the rest of my life.
yes the wheelchair thing sucks! I hate how people look at me. Lucky for them I haven’t heard them make negative comments so far 😂. It is very progressive. It stinks but I keep pushing forward! I got denied from social security. They sent a letter that said I’m not disabled. I felt like punching them. No this is normal :/
Wheelchairs aren’t that bad - now we’re literally rolling 😂
The looks from others is the worse! Whatever to them!
thanks for talking about the wheel chair thing. Yeah the government says if you can work you're not disabled. what? everything is that much harder. we are worthy of assistance whether or not we can work.
I agree with you on the sugar & wheat. I have fasted from wheat & sugar & one meal a day for 2 weeks now with my church's 21 day fast & prayer. I do feel a lot better & the inflamation is almost zero. I do eat hard cheese every now & then for a snack. I'm eating chicken & pork & very little beef. But what a difference it makes without the sugar. I miss my chocolate caramel machiato coffee in the mornings but I am still alive & kicking without it🤣 I will stick to this diet routine after the fast is over except maybe for my coffee. The other thing that really helps is water, water & more water.
Thank you. I already see a Urologist and have issues that began before my dx. Uro thinks that possibly those were the first signs as a healthy women with retention is not normal, but again no one knows. Did/do you take medication? Which one(s)? I started out on Glatimer Acetate & then onto Copaxone when side effects developed although they did with the brand also. I felt horrendous with those meds with high fever & severe chills. Thanks for your response, I appreciate your insight & sharing your experience.
i took Mavenclad in Nov and Dec so i won't know if it works until much later. started with copaxone and then aubagio worked for a few years until it didn't.
I stopped Ocrevus x 2 1/2 yrs ago. Still do not have normal B cells. WBC slightly low. My MS progressed with/without Ocrevus. 64 yrs old. My only infections are 4 episodes of shingles but no longer in work force, limited exposures, and I’m some sort of progressive MS. It’s a very individual decision. Good luck to u.
At the very least I'd try something else. Don't want to become disabled due to the med.... Kesimpta works alot like ocervus but isn't as harsh typically. I do copaxone. I am a progressive MS male. Copaxone is used for progressive MS but only in males according to my doctor. I have zero side effects from it which is important to me. My MS disability has progressed, but the major and severe MS attacks before I was on any med so far are gone. That's probably as good as it's going to get for me....
good question I often wonder the same. Diagnosed 2018, getting O 5 week intervals last mri no changes. So what if we stop O and take nothing, anyone able to talk to that. My MIL diagnosed in 1980’s diagnosis based on process of elimination but knowing what I know about MS she clearly had it. She was never on any meds for MS. Are the outcomes different?
I've been wondering the same thing as I have been seeing offerings of trials BUT you had to NOT be on any DMTs. I've noticed more patient's med hx now seeing people who have MS but also who don't take any meds...I just wonder if it really makes a difference or what's going to happen is going to happen regardless. I guess it's easy for me to say with no mobility disability despite spinal lesions...I will see how labwork turns out & my appt on 3/1.
if you don't have any obvious disability it would be great if the MS stayed that way and i hope it does for you but for me and many of the people with MS i know of, it progresses. Meds slow down the progression but it's not for everybody. what the general rule of thumb is sooner is better.
I was diagnosed at age 45. I had brain, cervical and thoracic lesions at diagnosis. My only symptoms were numbness and right foot drop that only happened when I exercised for more than 40 minutes. I learned later that was due to effect of increased body temperature. I tried Gilenya first but developed new lesions 6 months later so switched to Rebif. After a year I developed more numbness so went on Ocrevus when it was still in clinical trials. This was in 2016. I have been on it since then. My blood counts have been stable and have only had one UTI. I have had kidney stones prior to MS diagnosis and had another about a year in but think that was because I was taking high dose vit D to get my levels up. I went down to 2000 IU a day and none since then.My right leg weakness and foot drop has slowly gotten worse as well as right arm and hand has gotten weaker over the past 3-4 years. I saw a new neurologist a couple weeks ago (my last neurologist left). She is excellent and spent a lot of time talking about my MS course. She confirmed I have PPMS and not RRMS. Although I have had no new lesions since starting Ocrevus I do have a little atrophy in the spinal cord where the lesions are scarring more. I believe that is what is causing symptoms to worsen. She told me why exercise is so important; it helps the body try to remyelinate the lesions. It will lead to myelin but not in an complete orderly manner. Even though not perfect, it does help the nerve transmission somewhat. She also recommended I look into clinical trials for PPMS since my symptoms are increasing on Ocrevus. She said it would be best to find one before my disability score is worse as most trials don't accept people with worse disability. I am 54 years old and still work full time as a nurse so walk a lot. I wear an AFO brace but it has become obvious I have difficulty walking. Patients will ask me how I hurt my leg.
I personally would not want to go without a DMT until I am much older. Even the disability level I have now impacts my life a lot and I want to prevent more disability as much as possible.
I know it is a big decision. Get your neurologist recommendation and why they feel it is right for you. They will likely have a few options to choose from.
Update us on what is recommended and what you decide.
I had about 3yrs total of life suck on Ocrevus/Kesimpta, and was ready to quit meds entirely too. What if I told you I never had bladder issues outside of those meds, or that I peed bilirubin after shots/infusions? Weird right? 🤷♀️ Glad those days are over, I was so done with being sick all of the time!
I'm glad I chose "my last med" and while I do hope it is my last, as it has been very nice to me so far, I would be open to picking a 5th one to try should I need it. You just got your infusion, so you have time to think on it.
I was on Ocrevus for three infusions and then ended up in the hospital for an UTI, borderline Sepsis. Needless to say, I'm not a big fan with DMT's. If I knew (15 plus years ago) then with what I know now, I would seriously look into HCST.
There are a lot of different meds for MS now. If one doesn't work for you, try another! My med is the third one I tried after bad reactions from the first two. I would ask about trying something else.
I’m much older than you, 65, and my last Ocrevus infusion was Dec. 2021. I did great on it the first three years. However, as it caused my immunoglobulins to steadily decline the last two years, I’ve had nothing but trouble with infections and weird severe pains even though my MRI’s were stable the entire time. Long story short, I’m recovering from major surgery to fix internal damage caused by severe infections. Your body can’t fight infections effectively when you have no serum B cells plus very low immunoglobulins. My neuro won’t put me back on Ocrevus which I agree with but I haven’t figured out if I want to try another DMT at my age. There is a lack of agreement amongst neuro’s about high efficacy DMT’s in the 60 and over population And there isn’t a lot of good data to guide my decision either. You being only 50 have more information available to help you choose.
Thank you for your response, I appreciate you taking the time to share your experience. I'm very curious about my upcoming labwork & scheduled infusion on 3/1....my IGG have always been normal though so far. Possible change of life beginning could throw a wrench into things though too.
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