MS: Stop Meds = 4X More Likely to Need a Cane?
Vložit
- čas přidán 19. 12. 2023
- An observational study in New York found that people with MS who stop their medications have nearly a 4 times greater risk of using a cane and a nearly 5 times greater risk of developing secondary progressive MS. But is this really true? This video reviews the article and points out potential limitations of the methodology.
Selected Sources:
Patient-reported outcomes based on discontinuation or continuous treatment with natalizumab: New York State Multiple Sclerosis Consortium (NYSMSC) study: www.sciencedirect.com/science... Handling Censoring and Censored Data in Survival Analysis: A Standalone Systematic Literature Review: www.hindawi.com/journals/ijmm... Personal communication by e-mail with one of the study authors.
Comment or ask questions below! I would be happy to answer!
Subscribe on CZcams for more videos every Wednesday!
Make video requests in the comments section!
Check out my book “Resilience in the Face of Multiple Sclerosis” FREE on Amazon: amazon.com/dp/B07WP7H5LK It's about 5 people with MS who live incredible lives, the science and psychology of resilience, mindfulness, and ho’oponopono. Paperback priced to generate $0 royalty.
Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
Follow me on twitter: / brandon_beaber
Music: INNER GRACE - Copyright 2018 Wilton Vought Source: Really Really Free Music Link: • Video T
he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. - Věda a technologie
Diagnosed in 2015 and have done oral, meds, infusions until 12/22. Decided I needed a break. I don’t find anything that different on or off meds. I’ve learned to live with MS. Rest & chiropractic care is what I’m doing now. Will see how it goes.
Dr George Jelinek is one of the sucess stories in MS as others and stopped taking meds. I still keep hope alive
Dear Dr. Beaber. Me and my wife recently discovered that she has MS. I have been following your channel for a couple of months now and I gotta say I am truly impressed by the quality of your videos. As a researcher (from another area) I am impressed by how well you explain very recent papers to a general audience. Thank you for this content. All the best.
Thanks. Best of luck to you and your wife.
All I know is my wife was basically bed ridden until she started her DMT ofatumumab. It took about 8 months before she was outwalking me at the theme park in FL in the middle of summer. Steaming like a lobster. She was even wearing a small backpack.
Nice!
I'm so sorry to hear this. Look into HSCT for real results. My wife had panic attacks from Ocrevus.
That's great news!!! Love it. BTW, you're a great man to be by her side... I saw a video recently that stated that many partners (mostly men) are 6 x more likely to leave their partners after a diagnosis of MS. I wish I was exaggerating but I've seen my own family disappear and my brother's friends go silent after his traumatic brain injury so it' snot hard to believe.
@@debraindxb I appreciate that, it was definitely tough seeing her laying in bed all day for a few months but she's outpacing me still. She's actually 20 weeks pregnant now and off the medication doing really well.
@@MRMIKE276 THat's amazing and congratulations! I am happy for you both. Is she feeling a lot of relief from her MS symptoms while pregnant? It's my understanding that pregnancy can help calm down the immune system. Dr. B also has a video or two about how the number of pregnancies are directly correlated with disease progression. More pregnancies = less disease progression over all. The benefits of continued breastfeeding also seem to contribue to this success. You'll have to get your wife a breast pump to continue the benefits as long as she can :)
It's important to tell patients that once disability has happened, it's impossible to make it "un-happen". Also the treatment you take now is to prevent the (irreversible) MS damage in 20 - 40 years. So when they're balancing up side effects, they need to project forwards to themselves in 30 years being in a wheelchair or not.
Are you saying lesions never heal?
I am very upfront and explicit about this. Although many people recover from attacks (or even from progressive MS in some cases), we don't have any medication proven to grow nervous tissue.
@@mballer acute lesions heal all the time. I think uptoeleven is referring to long-standing fixed disability.
The body can repair myelin. Happens everyday. Do medications help or hinder that process? That’s an important question
Also , in Dr. Wahls’ book she states our body heals/replaces nerve cells and other nervous system components every 7-10 years. Medications can’t do what our bodies do naturally when fed correctly.
Hello Dr. Beaber! This video makes me worried. I've been undiagnosed for 12 years (first symptoms I remember were in 2011). Got diagnosed this year after optic neuritis. I'm about to start a DMT next year, but now I'm worried because this study shows the best outcomes for those who never took any DMTs. My only neurological deficit right now is difficulty with swallowing.
There is a tendency for people who are doing well to not take medications, so this is "reverse causation," not that the meds are making people worse. Essentially, MS is so variable that it's better to have mild MS and be untreated than to have aggressive progressive MS and be treated aggressively.
There are of proper randomized studies showing that earlier you start an effective DMT, the better you fare in terms of accrued disability.
If this study was a randomized study against a control group, they would have chosen randomly patients to have them stop treatment or start treatment half way and compare. The fact that this is an observational study definitely shows in these questionable results.
@@RonaldBeirouti Yes you are correct.
@@DrBrandonBeaberI don’t think you should dismiss this important patient group by assuming they were doing better to begin with so decided to not take medicine. It sounds like you’re trying to make the data fit a predetermined narrative. Many patients try medicine and find they are doing worse on it so discontinue it. That’s my scenario, and the scenario of a lot of PwMS Ive known since 2009. I then found I did better without neurological drugs and many others have found the same thing.
❤ ty for always clarifying your position- and others .
I’ve seen over the years- members of my MS support group- stop DMD’s- tho they do ok for a time- most return to meds or try to when they are bad-
I feel sticking to the regimen ( whatever that may be for you)
Would keep you steadier- on a trajectory without large dips or “ health events “.
Just my opinion.
Great video
#Sharingiscaring
#MavencladMiLF
Thank you. I look forward to watching your videos. Always wonderful information. Have a Merry Christmas! 🎄❄️🎁❄️☃️
I have been on medication for 3 years and it has helped a lot!
Thank you doctor , as usual very informative 👍🙂
Question :at 1:55
1893 appears on screen
OR
what u said "893 participants????
A fabulous video. thanks (as always) for realizing that we have brains and a strong urge to question and understand and are in this for life, and although do value kindness we don't crave sugar-coated-info delivery and that there is a difference from showing concern in the delivery and being overly performative as some are so inclined
It is 1893 participants. :)
Excellent video. Thank you for helping share this data and raising awareness of the value of continued MS treatment.
Thank you so much for these videos!
It’s good to see science focused information and explanations of studies and papers.
I’m wondering if anyone knows how people who have completed cladribine are counted in studies such as this.
If I’m two years post treatment, would I count as “on treatment” or “stopped treatment”?
This is an interesting point, and it is not specifically addressed in the paper. This would also apply to Lemtrada and HSCT or even someone who received chemotherapy for an unrelated cancer.
I’ve heard the only way to achieve gaining of function after neurological injury is exercise. Thoughts?
Also, since our immune system weakens as we age, seems like aging may be a DMT in itself. I believe great care must be used in using DMTs for long periods of time. Remember how you mentioned that B cell depleters (Ocrevus) can harm plasma cell production long term? BTK inhibitors not looking so good, stem cell therapy not as impactful as hoped. I would like to see a study comparing intermittent fasting\sunlight exposure to DMTs. No pill or shot can replace hard work and sunshine (fueled by healthy eating). DMTs seem most effective at onset. For older, long diagnosed patients I feel extra attention to risk\benefit must be applied.
Thanks for the video. Will watch again.
Do you think its better for those people that have a better chance at having "milder" MS (mild onset, no bladder involvement, no spinal cord lesions, low OCB bands, healthy eating and lifestyle habits etc) to not take a DMT, vs take one and then stop? Or do you think this study gives a false sense of risk, or lack thereof, with no DMT?
Yayyyy, I missed your video dont stop enlightening us dear dr beaber
In light of these results (which although not as severe, still seem to show worsening with stopping), I’m curious how you, as a Kaiser doctor, feel about Kaiser’s requirement that I only take rituximab for 9-10 years. My Kaiser neurologist has told me that Kaiser “does it right” and that patients are slowly “weened off” rituximab until it is stopped completely, supposedly forever. When I told my doctor to show me the research showing this led to better outcomes he told me there were none. When I asked if I could continue on rituximab every six months without weaning until hopefully there is some new option that does not deplete B cells, he told me that was not an option. I’m feeling a bit stuck but as I only have Kaiser insurance, I’m not sure what options I have
Greetings Dr. Beaber. I did initiate DMT within three months of my first symptom (optic neuritis). I discontinued DMT almost 13 years later. I restarted DMT in 2021. Clinically, my EDSS score is 1.0 due to vision changes from the original optic neuritis. However, I don't feel like I am doing that well even though clinically I look fine. I have increased sensory symptoms on my right side that started before I stopped DMTs and have gradually increased over time. I have a low brain lesion burden (~10) and have only one new lesion in 10+ years.
Now I see those who didn't take any DMTs during the whole time were on average 49.5 years old at the baseline with EDSS 3.2. Perhaps this is the reason they did so well. Their MS was slow as they only got to mild disability at almost 50 years of age. They were notably older than any other subgroup. Also their disease duration at baseline was the longest of all groups at 13.3 years, which is another argument for the "slow/mild disease" hypothesis.
Yes exactly
I’d like to understand the definition of “discontinued DMTs”. Almost 6 years ago I used Mavenclad which is a one and done treatment, haven’t used any other DMTs since. No relapses so far. Am I ( and others like me) considered to be in the category of people who have discontinued treatment? This might be a good topic for a new discussion. Thank you so much for all you do!
Mild disability; never took MS drugs. Age 60, MS diagnosed in 2022. Told I actually have had MS for 20 years.
Hi Dr. Bieber, great video but I was wondering if you could do more videos with respect to NMO?
I do have one video on NMO: czcams.com/video/xBCke5TsDGA/video.html I may do more in the future, but it is hard to make time for every video I would like to make.
Nice work
Hello again dr beaber, how are you hope you’re doing great,about future videos could plz talk about dmt (like tysabri ) and pregnancy planning ( my wife has been on tysabri for 6 months and i wonder if we planned on pregnancy could she get back on it after delivery and when ) thanx alot 🙏🌹🙏
@DrBrandonBeaber , could you ellaborate more on what you meant by, "By the way, secondary progressive MS and disability is more correlated with absolute age (time since birth) than duration of disease." Are you saying that someone who starts MS young (like a teen) doesn't necessarily have the same transition to SPMS like after 20 years (when age is mid to late 30s) but would likely see it later in life, let's say, in the 50s?
This is correct. It is commonly assumed that disability correlates with duration of disease (time since diagnosis or time since symptom onset), but it actually correlates more strongly with absolute age. The idea that transition to secondary progressive MS occurs after a specific period of time is simply a myth.
@@DrBrandonBeaber I appreciate you answering my question MORE THAN YOU WILL EVER KNOW. Thank you, Dr. B! That means a lot for someone who has their presenting symptom as a teen
What a crock- I'd have no organs today if I did not tell the neurologist in my area to take Beta Seron themselves and I researched for 3 years finding Testosterone and in 2011 I started using it under a doctor's supervision and I am Tho not brand new, I am doing 100% better than I was 9 years on Beta Seron. My cognitive has suffered but I am not the village idiot- it has helped in my disability not that I am 65+yo. I DO have over 20 friends many passed but they all followed the scare that their docs put into them. So I am basically the last man standing. 65yo,US Army retire/100% disabled, (Oh and 3 neurologists at Walter Reed in 1998 told me the flu shot should have been stopped since it was the culprit in my getting MS and losing my really great Army career. So no medicine is 100% safe- and the medical community hate to tell the whole truth I have found.
Is there any information about EWOT for MS?
Hi Dr. Beaber!
Thanks for sharing your knowledge, I like your channel a lot! I am 34 yr and got diagnosed with RRMS a couple of months ago and had my two infusions with Ocrevus recently. Walking with a cane temporarily.
What is the probability with Ocrevus to develop PML if this is my first time using DMT?
Thank you kindly, Allah bless you
The risk of PML with ocrevus without other immunosuppressants is extremely low, though it has been reported. Here is an article on the topic: www.ncbi.nlm.nih.gov/pmc/articles/PMC8473394/
@@DrBrandonBeaberthank you Dr. Beaber! I read the article and gave me a lot of peace of mind.
Quick question: I have 6 OCB on my spinal tap, but none on the serum. What would be the prognosis? Thank you kindly and Happy New Year 🎊
Question: When there’s a reason to stop an effective DMT, such as increased infections, what are your thoughts about stopping DMT altogether or de-escalation to less effective treatment medication? Do you have a favored plan, in general, for de-escalation?
It would depend on the nature of the reason to stop (i.e. how severe was the infection) and other factors like age, comorbidities, patient preference, etc. I certainly think de-escalation can be a practical approach (even in people who are doing well with no complications).
This is really interesting. Would this concern those who undergo HSCT and fail HSCT? Or only those who use DMTs?
I think this data would not apply to HSCT since it is well known long-term remission can occur after HSCT (or other treatments such as Lemtrada and cladribine)
Thank you for taking the time to answer. I appreciate you ❤
Why did they stop, that is some of the data that is needed.
I usually listen to videos at x2 speed, i need to rewatch this one at normal speed.
With such little information, I will tend to think the type of person who stops medication may not have good control over their lives and habits and may tend to abuse their bodies.
Who are these people who decided to never start medication, did they decide to do something else instead?
Missing data.
Were they offered medication and refused or never offered any medication or perhaps offered non medication therapies?
How much data did they collect?
The questions you are asking are a different study.
Some people are forced to stop due to losing jobs= losing health benefits. Medicare not covering certain meds, having a misinformed old school type neuro who told them they don't need meds at a certain age.
Not everyone who stops taking meds abuse their bodies. Sometimes it's just unfortunate life circumstances that occur and people have no other choice.
I was told from a lady who moved to the US from Poland that they only offer MS Meds up to 40 and then they can no longer receive. Heartbreaking.
DR B - your new hairstyle is on point. Looking good..
Can always count on you to tell it like it is thanks! BTW looking good there whatever you are doing keep it up! 🙂
The graph clearly shows people who weren’t taking medication at all throughout the study did best of all! We don’t know if they were doing better to begin with or not. The PwMS I know tell me they only started having real trouble once they went on the immune suppressants, and when they discontinued the immune suppressants they stabilised. This was my experience also. I’ve been in the MS community since 2009 (though had symptoms a few years previous, so should have been diagnosed in 2007).
The people who declined disease modifying therapy tended to be doing better at baseline. See the baseline characteristics in the video at 6:23
@@DrBrandonBeaber what I mean is, we don’t know how they were doing before this study commenced. They may have had very bad MS symptoms earlier in their disease (we don’t know), then done away with their medication and improved/stabilised. Sometime later they joined this study and the study “baseline” is measured. The baseline is of the study, not of the persons disease lifecycle
Dx in March 2017 as RRMS. DMT Tysabri started immediately for 51/2 years. Switched to Ocrevus 1-1/2 years ago with new Dx of PPMS. Went to a wheelchair 2 years ago. Almost full time with wheelchair now.
You’ve taken the risk of powerful immunosuppressants and you’ve still progressed rapidly - that’s not good. What age are you?
59
What if you aren’t being treated and its been a few years? (Only kesimpta for a couple months, got worse) There was a lot of back-and-forth on if it’s MS or another CNS.
I'm not sure how to comment on this. Many people are misdiagnosed with multiple sclerosis and inappropriately treated with immunosuppressant medications, sometimes leading to significant side effects.
It’s confirmed i have MS. But did worse on Kesimpta. I have other diagnosed autoimmune conditions. I live in LA but not kaiser, is there anyway to do like a consultation with you or something?
So where do we stand (PPMS 15 years , UK ) having never had and have been refused any meds . Talk about leaving something to chance ! The difference between ppms and rrms is huge , astounding even . Yet we're spoken about as though it's one disease .
Hi from Israel this research is very confusing it shows that there is alot work to do in finding the best treatment to have minimum disability and to have a good life thanks dear doctor for giving the update data
I'm glad it's helpful
Can I come and see you ? I do have Medicare I am a senior with MS and want to discuss changing Rebif for a different DMT thanks your videos are very insightful .
I am dealing with Optic Neuritis as I write this: Once again, Im pivoting back to the Whals Protocol. I was doing better this summer, but, * As I thought it was okay to flap the diet, I went back to eating cookies, spring rolls, soy sauce, an occasional pizza since Late October. Oh, and those Christmas cookies, a few bags of fun size candy bars, and a few bottles of diet soda, slowly made me worse once again, so guess what happened.. I ended losing my balance again. Plus, I lost my right eye vision. Argh!!
Its December 26, 2023, and my calendar log shows I began to slowly lose sight in my roght eye once again; Optic Neuritis. I can't see out of my right eye, except for objects; no detail.
However, went right back as of Christmas morning. Already I am seeing slight color again in the eye again.
*... Friends, I think I'm sold on the Protocol. If lucky, ill be back up the hill, playing the slot machines again and going to the ball game in preparation of baseball opening day, friends! Yippee! 😵😎✌️
Update: Optic Neuritis Vision loss; Right Eye; December 20, 2023, status Update as of Saturday, March 23, 2024 PM:
* 😁👏🥴 Vision in Right Eye returned during week; March 18-23rd today. Can now see 10-12 point letters. I'd call that Empirical proof, at least to me, that Whal's Protocol clearly is helpful in mitigation of MS symptoms. Plus, I can walk in the house without the two canes I own. Next week: let's see if I can make it down the street and back to the Walmart without problems with balance and gait issues. ... I'm out. Peace ✌
One neurologist says that ms is treated wrong. Typically doctors prescribe medications, staring with the least effective, and upgrading to more effective as disability accumulates. But that's like fixing the fence after the cows have left.
I do agree that there is increasing evidence for early high-efficacy disease modifying therapy.
Yes, ugh, this. Currently switching insurance specifically because Anthem still has step therapy requirements to access high-efficacy DMTs based on this outdated approach. Sigh.
Thanks Dr. Beaber as always for introducing us to new study results and information, so we can make the most informed choices about our treatment. ❤
@@DrBrandonBeaber
I think there's a split now with neurologists.
Because the risks of Ocrevous and rituximab are not much greater than some moderately effective drugs, with a low pml risk.
I heard Denmark does a conservative treatment, while Sweden does highly effective early on. And big surprise, patients in Sweden were significantly less disabled
It's hard for a patient to judge the risks. Because if you read the label on most medicines it will list many nasty but rare possible side effects.
@@charlesvan13 In Sweden, rituximab is commonly used as an initial therapy.
@@DrBrandonBeaber
Rituximab is probably a good option for less wealthy countries, because it's generic.
I wouldn't say it's cheap. But it is compared to patented ms drugs.
Pt an my own exercise routine got me out of bed no meds walk with an without cabe
Thanks for the video Dr. Beaber. We all know DMTs work but not that much as in that study.
I agree
My sister-in-law has MS
Her neurologist stopped her meds cause" she didn't need it".
That concerns me She's 10yrs.out Only had lesions in her brain
Her MS was caught by optic neuritis.
I stopped taking gylinya and took 3 bad lapses, I'm on ocrevus now nearly 4 yrs and I've never been better
Glad you are doing well Frankie
@DrBrandonBeaber thank you, I was supposed to move to the states but the cost of the meds was way too much, I get mine vi's the NHS in Northern Ireland, I appreciate your videos
I thought “Mild MS” was not an accepted idea in the MS community as progression is not linear. As you know, prior luck with lesion placement does not predict future success. How do I reconcile this with the idea that those with “mild Ms” self-selected into the untreated group?
MS is highly variable, and of course "mild" is in the eye of the beholder as many people with a lower EDSS could still have significant disability. Certainly, someone with "benign" MS could have problems down the line. I have a specific video on this topic: czcams.com/video/t4tvdSwNE3k/video.html
My Neurologist doesn't do EDSS.
Already used a cane and a wheelchair before my MS diagnosis. My MS neurologist actually just told me I may not even have MS. I don’t know why I’m watching this…
No one is forcing you.
Hi there just came across your comment. Ive had MS for 2 years and like you already in a wheelchair. Im not on DMTS. No DR. Cares about symptoms im in a wheelchair because of severe vertigo and my muscles atrophied. I have a very weak immune system. Like u im doubting i have MS. Mybe somethng else. Drs can make mistakes. In my case nobody even offered physiotherapy vitamins jst forcing DMTs. Sending u my prayers and wishing u health and a happy new year. Stay strong😊😊
I was advised to see a rheumatologist and neurosurgeon. I know u must be overwhelmed but dont gve up on answers and do try physiotherapy if you can bless u
No meds on Cane for security purposes an long trips walking walker very rare)
I don't like when half baked or half right studies are put out that people can pick up out of context as a reason not to take DMTs. I do believe they help and even though only pretty ineffective ones were available through much of my tenure with MS (Dx in 2005 and put on Copaxone for years only moving to Ocrevus about 6 years ago and now moving to Aubagio). I know some people just can't get coverage so don't take a DMT but for those that can and decide not to I feel they may regret it down the road-
🤗#SharingIsCaring🤗
⚡#WorthyOfAttention⚡.
I have Multiple Sclerosis
Finally given #Naproxen ➡ Steroids🤔
Currently using canes ; #Wheelchair ♿.
I'm Disabled Veteran 100% Army👘
57 year old Female.
Dead 3× 💀
Any help I'd appreciate‼ 🙄🙃🤕🤓