Multiple Sclerosis "Rebound" [After Stopping Medication]

[@donnabolt5847]

This was so informative- thank you! Rebound is my biggest fear- more than PML. 38% chance of rebound. Wowzers. I can't even imagine how horrific that would be because I fall under the aggressive category where steroids didn't work at all and so much damage to me happened in less than six months. Soo soo scary 😨 THANKS DR B for the video! As frightening as this is, knowledge is power and you have probably just saved a lot of people more damage because they are aware now and may be able to prevent a rebound.

[@DrBrandonBeaber]

Thanks Donna. It is always better to be informed. I always try to stress the idea of rebound with anyone who is considering starting tysabri.

[@frankgradus9474]

​@@DrBrandonBeaber Dear Dr. Beaber, could aHSCT soon after coming off Tysabri (due to a positive JCV test while on the drug) be an effective measure to prevent a rebound?

[@klbklbklb]

Thank you for another very informative video! I know I sound like a broken record as I've mentioned this on here before., but I would never have started Tysabri if I had been given the information of the possibility of a rebound once stopped. As another commenter mentioned, rebound is also my biggest fear, more than PML. I really appreciate the information in this video about steps that can be taken to lessen the chance of that happening. That does help lower my anxiety some ;) Thanks again!

[@dianemunro6068]

Could you talk sometime about Mayzent in those over 55yrs with progressive MS.

[@mywaterbaby1]

Thank you Dr. outstanding information. Thank you very much for posting and taking your time. Greatly appreciate it. Keep up the amazing work.

[@stonz42]

Thanks for the info Dr. B. I recently went through the transition from Tysabri to Ocrevus after only 5 months due to the JC virus. Had I known about rebound relapses when I chose the initial treatment, I probably would have opted to start on Ocrevus. Could you post a video about how the immune system adapts to operating without b-cells? I'm curious as to how the chances of infection remain relatively low in people on b-cell depleaters in comparison to the general population. I was hesitant to begin on Ocrevus because I was under the impression that not having b-cells would pose a more significant risk for all cause infections.

[@DrBrandonBeaber]

I will do a video on long-term risk with b-cell depleters at some point.

[@MrKoshnica]

super informative! Thanks!

[@DrBrandonBeaber]

:)

[@hackett1181]

Thanks for all the information, so thorough, and I wish I had this when I stopped to Saab eight years ago. Even then, when I was researching, I could see people suffered severe rebound from stopping the medication. Unfortunately, even when I brought printouts of this into my neurologist, he dismissed it. I went six months without no medication before I was put on copaxone. I was one of the lucky ones that I didn’t suffer a severe rebound.

[@DrBrandonBeaber]

Years ago, a "washout" period was widely recommended unfortunately. The fear of combining tysabri with other medications was overwhelming.

[@ldjt6184]

These drugs are a nightmare.

[@freethinkeralways]

My thoughts exactly! And all these meds r taken in hope of illusive future disability prevention.

[@franceszapata951]

I'm going through that right now because of Gilenya. It's been a year and I'm still numb from the neck down😔 I am supposed to start Kesimpta in December

[@Sharla1213]

So sorry to hear

[@acvmomma7050]

Was this symptom from a rebound or something else ? Also, how are you doing on kesimpta now ?

[@Sharla1213]

Such a double edged sword. I was having a ton of relapses before Tysabri and needed it (2008) had rebound coming off but I still think it was a net gain for my MS.

[@nonameavailablerlb]

Another great video. How about a video on spinal cord atrophy. Do biologics help? What is your approach to treating patients with spinal cord atrophy?

[@Robin-me8fe]

Another great video !

[@DrBrandonBeaber]

Thanks Robin

[@cj_1986]

Great video. Are there newer studies that show post Tysabri transitions to b cell depleters or IRTs and rebound activity with no washout period? Be Interested to see if those relapses are due to the wait for new drug Luckily in Australia I don't need to wait and can switch whenever I need to

[@roupakali4101]

I watch all your videos. They are great thank you.

[@DrBrandonBeaber]

Thanks Roupak

[@bethmcgregor7144]

Can you make a video on Bafairtam

[@poolmotorrepairguyFL]

Jay the Florida pool pump motor repair guy. When Service Calls Longwood approved ! that was good info 2 know 👨‍🔧Dr. Brandon Beaber

[@tvdb6153]

Hi Dr. B.....would a one-time infusion of Ocrevus or Kesimpta injection within 30 days after stopping Tysabri curtail the risk of rebound due to killing off the sequestered B-Cells? I have also heard of using 1000mg Metlyprednisone monthly for two months and then 3 days of 1000mg on the third month to reduce rebound? Thoughts?

[@tvdb6153]

?

[@hurkuy]

Another amazing, informative video about Ms and MS medication!!! Does Aubagio have rebound effect too?

[@DrBrandonBeaber]

There are a few case reports of this: pubmed.ncbi.nlm.nih.gov/32120027/ However, it is very uncommon.

[@hurkuy]

@@DrBrandonBeaber Thank you doctor!

[@pmooremoore2798]

Great info, thank you as always for taking time to educate! Video suggestion - Are there studies &/or do you have thoughts for the 60+ population with quiet RRMS or CIS who have stopped their DMT w/o issue? Risk's for infection increase in general for this population, so low wbc or lymphocytes etc as we age adds more risk. For ex, I've been on Tecfidera for 3+ years, mri's stable, but lymphocytes are ~0.6 & wbc slightly below normal range. Would love a discussion re the risks vs benefits with a mild case of ms :)

[@DrBrandonBeaber]

I am going to do a video on MS controversies which will mention the 60+ question though I can't give you personal advice on the issue with low lymphocytes. Certainly low lymphocytes in people taking tecfidera has been linked with [very rare] cases of PML.

[@pmooremoore2798]

@@DrBrandonBeaber Thank you! I look forward to all of your videos! Such great info.

[@beastywild]

Thankfully I live in Ireland and we have free healthcare so I don't have to pay for my Gilenya.

[@DrBrandonBeaber]

:)

[@mimiwhite1963]

I am in the US , have insurance and with the Gilenya Go program mine is fres.

[@angelapuric6701]

Wow, my neurology did not mention the risk of relapse after stopping Mayzent. I just started a new drug - Vumerity, straight after stopping Mayzent on 10/1/22. Anything I can do health wise to try to not have a relapse?

[@matthewwulff8292]

Dr B, are there any reported cases of rebound with patients taking Zeposia?

[@acvmomma7050]

The examples you gave of the patients who had rebound, were they on their new DMT yet or in the waiting “washout” period and hadn’t started the new drug yet ?

[@hannanhan]

I did stop Gilenya because I wanted to get pregnant. I didn't have any big problems before that. I could walk 10km etc. My symptoms went really bad situtation after stopping medicine. Almost paralyzed. I did get pregnant and almost all symptoms decreased but then I had a miscarriage and all the symptoms returned. Then I got pregnant again and same thing happend with the symptoms. Now I'm really scared what will happen when I give birth, will all the symptoms return again.. Is there any studies about that?

[@DrBrandonBeaber]

I have a video showing an article on this topic: kzbin.info/www/bejne/bKStf5aid69nmKM

[@ninawam9]

Thank you for this video, doctor i'm a neurology resident and i would like to know what's the difference between IRIS and rebond and can we have IRIS without PML ?

[@DrBrandonBeaber]

IRIS in the context of MS essentially refers to a severe rebound flare, and you can definitely have IRIS without PML. When tysabri is stopped due to active PML, it is common to have unusual PML lesions with active enhancement and edematous lesions.

[@ninawam9]

@@DrBrandonBeaber thank you 💙

[@frankgradus9474]

A good question.

[@Mastercreek]

Went off Tysabri started mavenclad. Severe nerve pain and worsening symptoms. I feel like I'm dying

[@Sharla1213]

If you’re still suffering, I would ask your neurologist about steroids to calm things down. that’s what they gave me after I stopped Tysabri

[@Mastercreek]

@@Sharla1213 I'm intolerant to steroids. Had adrenal insufficiency the last time I went on steroids so thats not an option. Thankfully I'm feeling better

[@lanadel3589]

i was using fingya i never had attack while using it then i stopped using it because of the Side effect and i had an attack my doctor said we should start new medicine its ocrevus but im really scared and i dont know what to do is it a real reason to start ocrevus?

[@ernietollar407]

If one is diagnosed past 55 years of age with PPMS, and factors in life expectancy, and not super fast progression.. there may be a fair argument against DMT altogether? THough I imagine the 'rebound' factor more so hitting younger patients would be a fair counter argument.

[@yucelkrc44]

First of all, thank you for your hard work. My wife switched to cladribine because she had frequent attacks in gilenya. Cladribine was started after a period of 1 month due to the risk of rebound. but despite starting cladribine early, she experienced 3 attacks in 6 months. Can the rebound effect last that long? He's currently 6 months on his 2nd year dose of cladribine, and will take a monthly dose of cortisone for the remaining 6 months. Although we started cladribine early, why didn't it start to show its effect? And do you think it makes sense to wait for the 2nd year dose of cladribine or switch directly to ocrevus? I would be very grateful if you could reply my dear doctor. lots of love

[@roupakali4101]

If you have stopped Tysabri 5 years ago and had a severe rebound what drug should be used in order to go back to the condition before stopping Tysabri. I am writing on behalf of my son who has MS and we live in London, UK. With my best regards.

[@DrBrandonBeaber]

I'm sorry, but I can't give you personal advise here. Often, people with more aggressive disease are advised to use higher efficacy medications (Tysabri, ocrevus, rituximab, kesimpta, cladribine, Lemtrada, etc)

[@roupakali4101]

@@DrBrandonBeaber thank you dr

[@dademyst447]

Avonex doesn't have rebond effect after stopping it right?

[@DrBrandonBeaber]

Generally speaking, it doesn't

[@dademyst447]

@@DrBrandonBeaber Grazie doctor!

[@shawn7517]

Hi Dr do you find some people with type 2 diabetes that are on tecfidera that tecfidera rises the sugar levels. As I just started tecfidera 2 days ago and is finding my sugar levels have been high is this something common in some people?

[@DrBrandonBeaber]

I have not personally seen this with tecfidera.

[@shawn7517]

@@DrBrandonBeaber thanks for reply you do a amazing job your videos are so helpful and great

[@desiredecove5815]

#Sharingiscaring

[@samlatooni]

Dear Dr Bieber, I got diagnosed with the relapsing remitting ms in August 2022. I was firstly recommended tecfidera at a hospital here in Frankfurt germany.but when I went to a neurologist, he recommended kesimpta...I am confused,could you please compare these two therapies???... I am 41 , male, single and with no immediate family. I am really afraid of being disabled.... Please help me decide. Thnx

[@Roadwaymike]

Ocrevus for the win