MS & Steroids: A Warning by a Neurologist

[@beckymoran321]

Dr. Beaber , can you make a video on decreased mobility that people say happens with Ocrevus and Kesimpta? It’s not a listed “side effect”, but SO MANY of us have experienced it. There are entire groups on Facebook about this. Any insight you can give in this?

[@ahmedfowad6882]

@@beckymoran321 yes I agree. I personally felt that rate of progression increased after ocrevus though MRI showed remarkable improvement. I decided not to repeat ocrevus (this decision was made with understanding of risks)

[@beckymoran321]

@@ahmedfowad6882 Ocrevus immediately had me almost in a wheelchair. Switched to Tysabri and got some mobility back. JCV went way too high to continue Tysabri so I was put on Kesimpta. Now I am experiencing the same thing as Ocrevus. I can barely walk!

[@koko_7]

actually Kesimpta didnt do any improve!! what is the point taking it and mobility and tremor gets bad...! i dont care about how many lisions on brain, i care how my body moves and live normal

[@EprstU]

Да, я тоже заметила ухудшение ходьбы после окревуса. Началось ухудшение после 2й инфузии, ещё хуже стало после 3й. Скажите пожалуйста, какие группы в Facebook с такой проблемой?❤

[@dattelpalme]

Even if I’m always thinking I won’t take steroids this time because of the terrible side effects, until now, I’ve always taken them for treating my relapses. The thing is, you’ll never know what would’ve happen without taken them but since they work quite “well” for me when it comes to fight the symptoms, it’s hard for me to decide differently. For example, I treated my last “mild” relapse with numbness on one side without any physical restrictions, after the last high dose (3 days) it took me “only” one week until all the symptoms were gone. I know that this doesn’t necessarily mean that it actually have done anything to really fight my ms. I just feel like I am doing better with..also I was completely blind on one eye which went away after steroids. I really hate the side effects though..like always, it is a very personal decision. Nevertheless I am thankful for your warning, thank you!

[@themilkman7367]

Have you considered taking a DMT to help prevent further future relapses?

[@dattelpalme]

@@themilkman7367 i take Zeposia for years now

[@dattelpalme]

@@themilkman7367I take Zeposia for years already

[@dattelpalme]

I take Ozanimod for years already

[@themilkman7367]

@@dattelpalme still relapsing?

[@laurarosanne]

50 mg of prednisone for a pneumonia is a high dose, compared to what is prescribed here in the Netherlands (30 mg daily, for 5-7 days). I can not imagine (and hope never to need it) what it feels like to get 1250mg daily…. By the way: I am really enjoying reading your book about resilience. Thank you for making it available (and for free)!

[@DrBrandonBeaber]

No doubt the side effects with 1250mg are much worse. Thanks for the comment about my book

[@HurricaneHeather]

I am grateful for the steroids I received with the second flair. Wish I had them 16 years ago when I had Optic Neuritis. Eighteen days of migraine style pain is a cruel thing to do to a person. Thank you so much for speaking to the unfavorable side effects of cortical steroids. Until there is a cure, we must be careful with the treatments that we use to stem further progression.

[@kara7197]

I had 2 courses of steroids for MS and hated them. Side effects were horrible and it didn't even work, as even with 2 courses I still had active lesions. The main reason I want to avoid any relapse is actually to avoid having to take steroids again!

[@smokeywaters7470]

I hate steroids. They make me feel like a whole different person. I actually feel almost manic for a few days after, they make me sweat like crazy, I get random cravings, I can’t sleep. Even after my Ocrevus treatments. For flairs, I would still consider them, though. At least whenever there is inflammation in the spine or optic nerve.

[@DrBrandonBeaber]

Do you know what dose you are receiving with ocrevus?

[@smokeywaters7470]

@@DrBrandonBeaberI believe it is 100mg

[@hcm444]

Thank you once again for addressing side effects. I wish there were more doctors like you.

[@EvenSoItIsWell]

Great video Dr. Beaber!

[@DrBrandonBeaber]

Thanks Vickie.

[@danielflicker6131]

I can beat that 😂 i had steroids for 6 months and ended up in a 2 month coma because of the flu

[@naghamsaad2970]

Thank you Dr. Bieber for providing a thorough explanation about the side effects of solumedrol

[@garyrooksby]

Great video, sir. Thanks for highlighting the risks.

[@catherineeASMR]

Honestly I had no idea steroids were still being so widely used. I had a flare a year ago where all of my skin burned, my arm/hand had about 2% function and I could barely use the bathroom, and I didn't get steroids. I guess I just don't see the point if it's not going to affect my long term outcome and, as you say, no drug comes without side effects (even if they're not detectable at the time).

[@stonz42]

Thanks for this warning Dr. Beaber. I've been lucky enough to recover from relapses without steroids. However, I do receive IV solumedrol twice a year with my Ocrevus. Unfortunately, the IV Benadryl and Solumedrol are the worst part of infusion day and I may consider switching to an oral medication in the future due to tolerability and long term immune suppression.

[@desiredecove5815]

😂I’m sitting in an infusion center watching this getting IV SM for a flare… first time in 9 years… Makes me wanna get up and run away 😂😂😂🙏🏻 I know we are all different. This is a great video, I appreciate you sharing your story and other case scenarios. Hopefully I’ll go many years again with out needing them. #Sharingiscaring

[@DrBrandonBeaber]

Bad timing for this video I suppose. I hope i didn't scare you too much.

[@desiredecove5815]

@@DrBrandonBeaber it takes more than a smart neurologist and years of MS to scare me. 💪🏻 However… I did second guess my flare for a moment… but then remembered… my labs were definitely indicative of one along with symptom reactivation. So necessary. I normally wait- but have waited a month- to only get worse and worn down. I’m a tough nut 🌰 Tho feel more like creamy PB today. 😂 Got a doosey of a H/A and chilly. But I’ll be better know in the long run.. It was a very good video and I do understand the importance of explaining the side effects of feeling “ dramatically better “ right afterwards for some. As it’s almost like a false affirmation- that “ oh my the roids are amazing and I’m feeling so much better so soon “. So people may think they need them, even though you CAN ride out some minor flares or symptom increases without them. Have a good day. I’m going to take a nap 💤 Tomorrow is day 2 of them 🙄😬🫣🤓💪🏻💪🏻🙏🏻

[@giordi2776]

Dr Beaber - can you talk medulla oblobgata lesions in one of your videos?

[@Chipvr127]

I wish there was a waiver I could sign to NOT take Solumedrol before my Ocrevus infusion.

[@breaker6497]

If steroids for some people can cause damage to other parts of their body and possibly not help with the MS inflammation, what alternatives are there and are there any being developed?

[@ahmedfowad6882]

Thanks for another great video. I was particularly waiting for this video as one my teachers prescribed me pulsed therapy (as I mentioned in your previous video). You have lot of experience in treating MS as compared with neurologists in my country as you are devoted to TREAT particularly MS. I think response(especially long term which was one your main evidence in denying pulsed treatment of steroids) may vary in different populations. I think all neurologists agree with efficacy of high dose steroids in treating relapses. However long term pulsed steroids treatment for RRMS, SPMS is not evidence based medicine. I have an impression that there are medicine(DMTs) which have good short term results but may not show impressive results in long term. I agree some adverse effects are definitely concerning like avascular necrosis. Other side effects (like varicella) can occur with other high efficacy DMTs.

[@DrBrandonBeaber]

I'm sure there are neurologists who believe in pulsed solumedrol as a long term therapy, though it has become less popular.

[@braaandooon3166]

1250mg for 3 days pulled me out of my first relapse, some anxiety, but went home and felt like bench pressing a bus. Took advantage of the take home taper down script to get me back into shape.

[@Mastercreek]

I got adrenal insufficiency with steroid use. Thankfully my system came back naturally over time but it was scary. Unfortunately through the process I lost a lot of muscle mass that I have not been able to get back

[@ahmedfowad6882]

May I know for how long you took steroids?

[@debbiegrisdale2410]

I've been diagnosed with Addison's disease, due to high doses of Steroids for my ms relapses. Just diagnosed.

[@Mastercreek]

@@ahmedfowad6882 it was steroid injections for lower back pain

[@DrBrandonBeaber]

What dose did you take and for how long?

[@Mastercreek]

@@DrBrandonBeaber I had 4 steroid injections in a 2-week period which caused my system to shut down

[@roberture5903]

Thank you Dr Brandon for the l videop, I am actually in the hospital now and I have a UTI

[@ecarlson4987]

My doc prescribed 4mg dose pack. Turned out it was effective. He said it was a pseudorelapse. I definitely had a cold and my MS made my legs not function.

[@thaliaventouris3855]

Thank you Dr. Beaber for the information. Is the oral steroid given with Ocrevus a high dose? Thank you!

[@r.e.potter6315]

What about ACTHAR? What are your feelings about that medication?

[@DrBrandonBeaber]

I talk about ACTH at 9:56 in this video: kzbin.info/www/bejne/iZavcoqCaaamgKM

[@judehall2220]

Thank you for this informative and interesting video!

[@sergeychalkov4]

I received a pulse therapy almost immediately I got my MS diagnosis. And it was horrible. I thought I could de well without it. Steroids really worsen the symptoms of my MS even introduced some I didn't have before or after. It's been three years, I am on tecfidera. I hope I won't get steroids ever again.

[@DrBrandonBeaber]

Sorry you had that experience, though many people disagree and feel great after steroids.

[@kkaci5]

I was refused a diagnosis, therefore refused any steroids, for three years of many relapses. WHAT I LEARNED - relapses end with or without steroids. Three years in I back calculated and figure that steroids may have shortened the relapses by a few days at most. One summer I had an untreated UTI long term which caused several severe relapses - but steroids would have made the infection even worse. I work with folks who've had MS a long time, and the degree of insulin resistance and osteoporosis is alarming and makes falls even more dangerous. Yet I see in groups all the time someone who got steroids for a relapse related to infection, or even a simple sensory relapse. I don't get it.

[@debH313]

Thank you for a great video. I have secondary progressive MS and I have found that steroids haven’t helped much unless I am having a true relapse. I have had MS since 1995 and I am now on Kesimpta but I have got covid 3 times so I’m very concerned that it is because of the Kesimpta. Do you have any thoughts about this situation? I have very bad effects from the covid on my mobility and I am not sure if I should keep taking such a strong immunomodulator.

[@koko_7]

Kesimpta didnt do nothing at all, it didn't even stop progression

[@sarahdotcom]

I've had five relapses and not been offered steroids except for one time when I'd nearly recovered by the time I saw a consultant, who wanted to recruit me for a drug trial involving steroids. I was in precarious employment at the time and it would have been too difficult, with probably no benefit to me (to the point where I'm questioning how ethical it would have been to recruit me - but they still needed 100 people, so)

[@Plottoberry]

When I lost eyesight in my left eye completely, I was happy to get a high dosage of prednisone for 5 days. Tbh, I was tired for a few WEEKS after that. It is intense stuff!

[@pennymcblaneake1684]

Steroids have ruined every part of my body 😢. I had a rough go early on, but thankfully I am back to work 😊

[@pennymcblaneake1684]

Yes! I have had shingles, osteoporosis with fractures, and a foot which had a joint bone on bone.

[@georgielol]

They gave me horrible acne, ruined my face :( .

[@jaktag]

This is why in all my 32 years of MS I have avoided steroids and waited my relapse out,even though I have had some really long and viscous ones.

[@MatttMan]

@@pennymcblaneake1684 same here! Multiple bouts with shingles, Avascular Necrosis in both hips, have had a procedure called Core Decompression in both, am trying to wait to get them replaced….and, they make me crazy!

[@koko_7]

how long it could take like a month or it can take a year? ​@@jaktag

[@donnabolt5847]

I just want to put here my experience with solumedrol just to hopefully help make someone aware of what can happen with solumedrol. Was diagnosed and a month later i had relapsed. Got 3 days IV solumedrol. Still felt horrible. even more new symptoms. Was given 3 more days IV solumedrol. Still f⁴elt wicked bad but..... bam. Side effect: A side effect of solumedrol is temporary loss of eyesight about 3 months if you have optic neuritis. I lost mine for 5 months. In both eyes. I dont know if people know this can happen. Until they told me. And yup its on the drug info paperwork. My question is if you have 2 doses of solumedrol 1g each time can that possibly affect your hips? Or is more after years and years?

[@DrBrandonBeaber]

I think it is possible after a single dose but much more likely with higher cumulative doses. If you go to figure 3 in this article, you can see there is a correlation, but osteonecrosis of the hip can occur with very low dose prednisone: pmc.ncbi.nlm.nih.gov/articles/PMC7127809/

[@shobanamalligarjun2061]

Can trying to avoid a high dose corticosteroids for a relapse because of its side effects lead to disability sooner?

[@DrBrandonBeaber]

Most of the evidence suggests that steroids only change time to recovery after a relapse and do not necessarily change long term recovery, but this is a controversial topic.

[@MatttMan]

just checked my records…….since 1987……I have had 35 complete rounds of Solumedrol….some 3 days, some 5 days, even 6 times, ive had 10 day doses…….I have had shingles 7 times….Avascular Necrosis in both hips, have had a procedure called a Core Decompression, on both, still have not replaced them, the hips, cause I fall alot…whats the point if im gonna dislocate them constantly…..bone thinning in left shoulder, had surgery to clean the dead bone out, in my jaw, my teeth are a mess, and in my lumbar spine, it is now fused……..great stuff!!!

[@DrBrandonBeaber]

Wow. Terrible. Luckily in modern times, no one with multiple sclerosis should be subjected to this because of disease modifying therapies.

[@MatttMan]

@@DrBrandonBeaber well…I wish, forced to retire, lost my INCREDIBLE insurance, cant afford $1500 for the copay, and very uninformed drs, to fight for me….I hooe and wish and am planning, to see Dr Boster, unless you have an opening lol

[@sks2365]

I was diagnosed in 2023 after symptoms of crawling skin and numbness in my hands. My hands are still numb 18 months later. My neurologist did not prescribe steriods. I was prescribed a DMT and sent on my way. The lack of sensation is annoying and can be dangerous when touching hot things. I was wondering if I can still get steriod treatment months after the flair up? Is it worth it or wait it out?

[@marybethcully5883]

I have used high does of steroids, many times…mostly in the early years of my disease when there weren’t any DMTs. l did the monthly infusions for six months back then and it did help to quiet down the MS but I rarely use them now as I am progressive but with few “flares”. Just had a baseline bone scan and hopefully It will be okay…just another ms reality. I am so glad for the newer diagnosed, so many better options.

[@sivanmahadevan2458]

Doctor wham I get steroids for my PPms even on infusion I feel really great though it lasts only for few days

[@DrBrandonBeaber]

Some people report benefit for much longer, but in my experience, it is inevitably temporary if given for any reason other than a genuine relapse.

[@tvdb6153]

I had a spinal lesion at t9 that wouldn't stop enhancing and was getting worse for 3 months. Finally shut it down with 500mg/day for 3 days. It worked, it stopped enhancing and I feel it limited further damage.

[@WilliamWallace-sc9cx]

I'm going to switch from Tysabri to Copaxone(my first DMD) because i was not feeling well with Tysabri and my Dr told me to do one 1g methylprednisolone dose of steroids once a month for 2/3 months to avoid complications while weaning of Tysabri. Is it a normal procedure? Thank you 🙏

[@DrBrandonBeaber]

I would prefer not to comment on this, but you may appreciate this video: kzbin.info/www/bejne/Z5y9m3VmoNqokLs

[@Plottoberry]

From Tsabri to Copaxone? That seems weird.

[@WilliamWallace-sc9cx]

@@Plottoberry Yes, i know that is less effective but it was the one i took before and it was not creating so many side effects. But thinking that the wean off Tysabri could cause a relapse, scares the cr@p out of me. That's why I'm having so many doubts..

[@Plottoberry]

@@WilliamWallace-sc9cx I'm on Copaxone now, its my first med. I choose it because it doesnt have much side effects as well. I can imagine being scared of a relapse, I would be as well! MS is unfair. :( I wish they had a med that *instantly* works (to some degree, on group level, you know the drill), that you can take when switching between meds! I mean, we basically all would love to have that option...

[@crackerbarrelfan4536]

Approximately 15 years ago, prior to being diagnosed with MS, I was given Prednisone to help manage a severe respiratory infection. Similar to your experience, I felt great after taking the medication. I felt strong and energetic. This is why I was surprised that I had no reaction to five days of Solumedrol for a relapse last year. I slept a lot during my five day stay in the hospital and did not have the boost of energy I experienced with Prednisone. Do you think MS can affect how your body reacts to steroids? My husband, who is a physician assistant, was surprised that I seemed to have no side effects at all.

[@DrBrandonBeaber]

I don't think so. People with MS can get the same side effects (as you can tell from many of the comments to this video). There is just a lot of variation from person to person.

[@ernietollar407]

60, post Ruiz HSCT. dont want to poke the bear ... but, what about life style hormone use - DHEA testosterone for people who want to buff up a bit and put more pep in their step? I used DHEA in my 40's. not sure I should risk it though. Around 3.5-4 edss... this spring's MRI post hsct in spring 2023 was clean. If I am worsening it seems very slight and I'm 13 months post Hsct. I'm planning to stay off of DMT's and hope being 60 and quite happy wiill keep things ok. Dr. Beaber do yoyu have videos on the use of such hormones (dhea testosterone etc)?

[@DrBrandonBeaber]

There is not much data on testosterone and DHEA to my knowledge. There is some research on estriol as explained in this video: kzbin.info/www/bejne/ZnPUaqOKdpyimNE

[@halfbakedblake]

Steroid psychosis, took 9 months-a year and im still having issues. I've done a lot of dtugs, but this destroyed me and my mental state.

[@josephinej2826]

I ended up getting an adenoma in my brain while i was in ocrevus..... Then also got diagnosed with Addisons disease, so now i take 10mg hydrocortisone in am then 5at 2....... I've had MS since i was 14(2o09/9th grade)..... So now idk how i will treat my current potential ms attack x.x

[@Nokara3]

I had my first relapse of diplopia the end of november 2023. Neuro opthalmologist prescribed me 1250mg for 3 days, oral treatment. NO WARNING! no support. no education. It caused me severe psychiatric adverse effects that I am still recovering from 9 months later. severe insomnia for 3.5 months, panic attacks, clinical depression, depersonalization and now still chronic anxiety and low mood. Ive been to ER several times and they send me home with benzos. i wish I never took them!

[@DrBrandonBeaber]

Sorry you had such severe side effects. More typically, the psychiatric side effects of steroids resolve after a few weeks.

[@Nokara3]

@@DrBrandonBeaber i have underlying anxiety disorder.. maybe even adhd im starting to find out. Prednisone was a massive trigger for me. My antidepressants that I was on for 20 years just stopped working too. Not having a good time!

[@valentinal8978]

Могут ли стероиди спровоцировать когнитивние нарушения?спасибо.

[@ltbanner2804]

What about the steroids as part of Ocrevus treatment? Is there a risk that outweighs the benefit?

[@HollyOly]

My personal experience is that I HATE it, but my neurologist and I agreed to do one more infusion with the steroid pre-treatment. As long as everything seems ok, then we’ll try without (or with even less).

[@kristies2521]

@@HollyOly this is the same with me - on my second dose of steroids with Ocrevus. She said after 3rd, she will take steroids out.

[@Harold_Blackwell]

Insomnia is a side effect of the cocktail for Ocrevus. I know to expect it every 6 months but over the course of years things begin to add up.

[@HollyOly]

I have progression without disease activity, but I get low-dose before Ocrevus infusions. I *swear*-but can’t prove-that it’s why I feel awful for weeks after! My sympathetic nervous system hates it!

[@DrBrandonBeaber]

Everyone has a different response to steroids. No everyone has a temporary benefit.

[@Beesgatheringthyme]

Total hip replacement both sides in my early 50’s. Believed to be AVN caused by steroids. Only 2 courses. In ten years.

[@DrBrandonBeaber]

Hm. Very unfortunate. Hopefully the hip replacements were successful. Were these courses of steroids for multiple sclerosis flares?

[@score311]

Appreciate this. Thnx

[@davidandrewcope]

I got hit with a terrible fracture a few months after my diagnosing relapse. 7 day course of Solumedrol, which didn't cause any problem at all, at the time. I started feeling great, and back to work, but then fell.

[@DrBrandonBeaber]

Hm. Very unfortunate. Hopefully it recovered well.

[@davidandrewcope]

@@DrBrandonBeaber Doing much better, thank you. I feel like I would have been hurt during the accident either way, but I think the steroids caused the injury to be significantly more severe due to weakened bone.

[@PlatinumRatio]

Those are very specifioc MS symptoms. I've suffered them all and wish I could get answers about my hip. You're wrong. It's MS not roids. I've never had any.

[@harddriveusame7248]

Two years ago or so now, I went to ER because I thought I was having a big MS hug episode, shortness of breath. ER dr talked it out a bit with the neurologist on call (this was out of my room). I was having X-Rays and normal tests run. I got IV steroids, but they also had to get better chest X-Rays. It didn't take them long to get me to ICU with blood clots in both lungs. Looking back, I probably didn't need steroids. Over all during 15 years so far I haven't been given much for steroids. Pretreatment for O infusion almost doubles my count but I am back to a pill drug.

[@DrBrandonBeaber]

I personally feel more comfortable diagnosing "multiple sclerosis hug" when other medical conditions are ruled out, particularly if there are atypical symptoms (shortness of breath is not typical of "multiple sclerosis hug")

[@harddriveusame7248]

@@DrBrandonBeaber I'm guessing on call neuro wasn't as "up to speed" on MS for the situation.

[@jeffm2571]

I don't take them

[@keithriemersma9793]

Please comment on ocrevus zunovo

[@Doomwillnotwin]

My first attack I was ordered 5 days of high does IV steroids with no change, went to 6 rounds of plasmapheresis, somewhat helped 5 more rounds of steroids, 6 more rounds of plasma, and my hands still feel like crap. During all rounds of steroids, my heart felt like it was beating out of my chest, couldn’t sleep, did feel invincible though lol #MSsucks

[@existentialdetective2010]

Kesimpta does the same to me - repeated UTIs and susceptibility to infections which I did not have before. It (Kesimpta) messes with your immune response. Prednisone always helps me and I take high dose orally for 4 days when I get a flue or am extremely fatigued to walk. I have RRMS and stable MRI even before Kesimpta. Predinsone works. I protect my gastro intestinal system by consuming goat milk regularly. Kesimpta-DMT brings all those risks and no evidence that in patients who have had MS for 20 years like me it is the Kesimpta's impact that reduces relapse rate and not just the nature of the disease progression...Just my 2 cents. Would love to hear a replica on how are they different in terms of increasing infection susceptibility.

[@JoyceG-i8t]

Arthritis by far worse than any of the symptoms of MS? But Dr. Beaber, how about pain from trigeminal neuralgia…?

[@HollyOly]

To be fair, the example he gave wasn’t arthritis. Loss of blood supply to the femoral head/neck is different and can be devastating. Also, he was comparing this particular patient’s MS symptoms to this particular symptoms of femoral blood loss. I agree with you though that he could have been MORE clear that the example was n=1.

[@JoyceG-i8t]

@@HollyOly oh dear, how is that possible..?

[@HollyOly]

@@JoyceG-i8t Well, for one thing, everyone with MS has different symptoms. For example, none of my symptoms have ever been painful in 16 years-all sorts of other things, but not pain. But the loss of blood supply can (will?) lead to necrosis, and the death of tissue in such an important joint would almost definitely be excruciating. It’s only one example though. One person with mild to moderate symptoms of MS who happens to have one disastrous reaction to steroids. The science checks out that steroids *could* be far worse, but I’d argue it’s unlikely. It’s one case study that should give us and our clinicians good reason to pay attention to steroid reactions.

[@DrBrandonBeaber]

I have a video on treatments of trigeminal neuralgia here: kzbin.info/www/bejne/m6XCg4lnjdqXZsU

[@JoyceG-i8t]

@@HollyOly wish you all the best🙏🏼💕

[@KatBerry-p5c]

What about topical steroids??

[@DrBrandonBeaber]

They are much less likely to cause systemic side effects, though they can cause skin atrophy with chronic use. They would not be beneficial in multiple sclerosis.