Time To Quit Your Medication?

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  • Опубликовано: 1 дек 2024

Комментарии • 83

  • @dougtagg9162
    @dougtagg9162 2 года назад +8

    Thank you for the Monday morning video. What better way to wake up an hour earlier to start a new day and new week with a coffee in hand from , again from Lyndhurst.

    • @AaronBosterMD
      @AaronBosterMD  2 года назад +1

      Morning! #WeHaveMS #StrongerTogether BosterMS.com

  • @beckymoran321
    @beckymoran321 2 года назад +9

    This is a tough subject for me. I suffered for a year on Ocrevus “waiting for it to effective”. I wanted off of it at 6 months, but my doc asked me to wait until 1 year. My mobility went way down, my cognitive function was suffering and I had “attacks that required steroids every few months. I am now on Tysabri and I am 7 months with no attacks and slowing working on my mobility.

    • @zelprimo
      @zelprimo Год назад

      I understand what you mean. They said my MS came on aggressive, and I have family history. They started me on Tecfidera, and switched me to Aubagio; still relapses. Now I'm on Ocrevus, 3 years, and still relapsing, though less frequently. They said there's no better therapy for me ATM and.. idk if I should continue or just stop all together

    • @PsychoKittee1
      @PsychoKittee1 Год назад

      @Becky G, I was doing great on Tecfidera for 3+ years, then my Dr. wanted me on a more aggressive DMT. Enter Ocrevus, I had a similar experience as you. I also had anaphylaxis issues during infusions. I was told to give it more time. After my 2nd full infusion, progression, and I threatened to stop all meds, my Dr. switched me back to Tecfidera.
      Now, I've been on Kesimpta since Nov. 2022. I'm still hoping and praying for some return of function. I'm 51, and I will be "celebrating" my 10 year diagnosiversary this Sept.
      🧡

  • @__Wanderer
    @__Wanderer 2 года назад +4

    Thank you Dr. Aaron, you have provided me 10 times the amount of information my neuro and nurse have :) I appreciate what you are doing with this channel enormously. I am in the Netherlands and my Neuro appointment for diagnosis was 10 min, was told I had MS and chucked out... on to the next patient. Was also provided no information whatsoever by both the neuro and nurse, not even on medicine choices. In the netherlands they still use the escalation model sadly... As I was just diagnosed (and now blind in one eye from ON from my first relapse) I wanted to hit it hard, I was and still am scared of another such / worse attack as I am only in my late 20s. I asked for Ocrevus but was told by my neuro "someone died from taking it recently"... great bedside manner. In the end I am now on vumerity (tecfidera) since the last 3 months* - this was largely pushed by my neuro. In your opinion (i know no medical advice can be given) is it also appropriate for individuals to start off on Ocrevus? Appreciate the content and your expertise :)

  • @Lily99468
    @Lily99468 2 года назад +2

    Hi Dr Boster. I've been on Tysabri for 14 years and it's doing the job. I'm JC-.
    I do have some tolerability issues with it. I saw my Neurologist last month and she said that a conference she attended recently it was said that we could stop the hard hitting DMT. I was sent home to research Gilenya, Kisempta and Aubagio.
    I have chosen to stay on Tysabri as it's working so good, I don't want to "risk" a relapse. I have over 100 lesions in my brain. 13 in my C, 5 in T and 2 in L plus brain shrinkage. In 14 years on Tysabri I have stayed stable and I'll happily "suck up" the tolerability issues.

    • @nikkikaur5065
      @nikkikaur5065 2 года назад

      Amazing news that you have stayed stable 🙏🏽 does that mean you’re stable mobility wise too? I’m looking to go on Tysabri since my previous DMT failed and I developed foot drop

  • @desiredecove5815
    @desiredecove5815 2 года назад +10

    This is a great video- idk 🤷🏻‍♀️ how many people NEED to understand How/ what/ why their DMD works. When to wonder if it’s working or not. Excellent analogy re- birth control…
    Easily understandable.
    Thank you for making a hard subject easier to understand.
    #Sharingiscaring ❤

  • @lindawhite3494
    @lindawhite3494 2 года назад +1

    Sadly I think my neurologist only looks at what the radiologist notes on the findings. Now I just found out he is leaving this practice and going to another hospital system so now I need to find a new neurologist. Thank you Dr B for these videos.

  • @gigirncmcneish4744
    @gigirncmcneish4744 2 года назад

    Good explanation of treatment juggling that is done. After being a RR pt on Avonex moved to Copaxone and no new lesions but progressive weakness developed, Mayo Neuro halted all meds and labeled SPMS. Now 62 female powerchair dependent Neuro keeps suggesting Ocrevus. Why? No new lesions but generally weak and disabled. Requiring assistance to even get in bed. It wasn’t tested in my population or in wheelchair patients my age. One gentleman died of PML shortly after trying it. My age and wheelchair bound. Thank you, appreciate the videos.

  • @micheleannslater8823
    @micheleannslater8823 2 года назад +1

    Thank you for sharing your knowledge with us! I always share your videos with the 2 Facebook pages that I am an Administrator of. So your videos are shared with over 3,000 people :) Also, Thank you so much for being my AWESOME & CARING MS Specialist - I am blessed!

  • @mikestrasheim923
    @mikestrasheim923 2 года назад +1

    Hello Doctor, since tele visits are no longer an option, which I will sorely miss, I will look forward to all of your content. I don't take your advice lightly . Thank You

  • @forrestmac1
    @forrestmac1 2 года назад +2

    Dr. Boster, thank you very much this video and teaching! You are helping me so much in dealing with this disease.

  • @TH-ib7zz
    @TH-ib7zz 2 года назад +2

    This is a very helpful video thank you for always making everything sm easier to understand 👍

  • @georgefrench6713
    @georgefrench6713 2 года назад +1

    This video is why I’ve decided to switch to Lemtrada against the opinions of my former neurologist at the VA. Without discussion about my current state of health, I’ll say I have progressive MS and have been taking Ocrevus for 4 years. My new neurologist shares your view and I’m glad (while very late in my MS experience) I found him. Love your channel. While I have had MS for 15 years I always seem to learn something new from you.
    One request. Can you do a video about current research into medicines that could repair lesions in the brain and spine.

  • @e.hutchins1121
    @e.hutchins1121 2 года назад +1

    Dr. Booster, thank you for this video!! I sooo needed it today. My neurologist skirts issuers, promises outcome beyond clinical trials and FDA approval and answers only some of my questions. These videos are wonderful.

  • @sandraramsey9551
    @sandraramsey9551 2 года назад +1

    Good Morning Dr. Boster. Hoping something new comes out soon. Ocrevus doesn’t seem to be working for me as I’d hoped. No bad side effects, just progression. Grateful that new DMT’s are being worked on!

  • @EvenSoItIsWell
    @EvenSoItIsWell 2 года назад +1

    Thanks Dr. B! I would love to see a video on brain volume loss and how it is determined.

  • @metalsomemother3021
    @metalsomemother3021 2 года назад +1

    I sent this video to a young friend of mine who has MS. Here is her response. Can you please talk about the cost of these meds.
    Wish he thought about cost of these drugs. Gilenya has a generic on the market now so getting payment assistance will likely be more difficult to obtain in the near future. Doctors don't seem to have this on their radar when thinking about these treatments but it's definitely a factor for patients.

  • @estuardogutierrez9041
    @estuardogutierrez9041 Год назад

    I love how you explain things!! I think i have MS but i havent been diagnosed and its been 3 years i dunno where to get help so i been watching your videos

  • @andreabaldrati9711
    @andreabaldrati9711 2 года назад +2

    Good morning Doctor !

  • @raymondschnell9622
    @raymondschnell9622 2 года назад

    As Always, thank You Dr. Boster for all that you do. I'm on Tysabri for 2 years now. While I don't feel any different, there has been no lesion activity. This combined with drinking Plenty of water & making every effort to eat Fresh, homemade meals from scratch I believe is giving me the best opportunity to go as far as I can without getting worse.

  • @kevinhorne194
    @kevinhorne194 2 года назад

    I think it is important to note that you are recommending a switch to another DMT not quitting and being on nothing. I like #6. I’ve switched every time something new/better came out. Copaxone, tysabri, Ocrevus, Lemtrada.

  • @DoctorGretchenHawley
    @DoctorGretchenHawley 2 года назад

    Thank you for sharing these circumstances! It can be easy to feel stuck in a medication. 🧡

  • @deborahkaba4573
    @deborahkaba4573 2 года назад

    Appreciate your expertise. I just started Kesimpta after taking Copaxone for too many years. I’m hoping for the best. Thank you.

  • @kaym9882
    @kaym9882 2 года назад

    Always, and I mean always, such a helpful doctor. God bless you. 😊

  • @sosram
    @sosram 2 года назад

    Hi Dr
    So much logic easy to understand. Great information as usual thanks again for your videos
    take care till next time .👍
    From Derby England.

  • @yvonnemolina6352
    @yvonnemolina6352 2 года назад +6

    I have been watching your videos for awhile now and I have suffered from many of the symptoms for many years now but never tried for a diagnosis. I am 61 now is it even worth a diagnosis now? Thank you for your videos.

    • @komoonkh
      @komoonkh 2 года назад +1

      It is always worth it. Never too late to care about yourself!

  • @Leah1307
    @Leah1307 2 года назад

    I honestly hated my copaxone injections and was a little happy it failed. I'm much happier doing my ocrevus infusions.

  • @omarkul5320
    @omarkul5320 2 года назад

    Interesting to know... Thanks for your efforts making educative videos.

  • @ThereseVaglio
    @ThereseVaglio Год назад

    Your so through👍💯

  • @AndiPandiBee
    @AndiPandiBee 2 года назад +4

    I had a relapse because I caught covid. Personally I assumed this would happen even with Tecfidera. So I didn't bother telling my doctor or anything. I lost my ability to walk for two weeks it took months to get to a new normal. (I'm a wheelchair user anyway and had support so didn't feel I needed intervention).

    • @Moon-yj5ge
      @Moon-yj5ge 2 года назад

      Same thing happened to me too. Expect Im on AVONEX and had optic neuritis again due to Covid.Bevor I got COVID (June) had an MRI scan and it was really good. No new lessions and the old ones faded a little. I got COVID 2 weeks later and had to pause the injection and got not really a new relpse but my old one kinda flared up again.
      I wish you good recovery and don't forget to look out for yourself more.🌷💜

  • @brendadouglas4868
    @brendadouglas4868 2 года назад

    I almost made 3 years on Aubagio, my 7th DMT. My platelet count has been slowly dropping and hit 79 in August. I left a message for my neurologist about this, he temporarily stopped the Aubagio. 6 weeks later my platelets were back up to 102. I guess it's on to DMT #8.

  • @lemonpeelangelfish
    @lemonpeelangelfish 2 года назад +1

    Thank you Dr Boster, an excellent, informative and helpful video! I’m curious - what is that machine behind you? 😁 🔥🔥🔥🔥🔥

  • @opalsmith7030
    @opalsmith7030 2 года назад

    Excellent Dr. B👍🏽💕

  • @mariefrid9614
    @mariefrid9614 2 года назад

    Wow! This video addressed so many of things I have wondered about and also experienced. You help me so much with your great videos ❤ thank you and keep up the great work 🎉

  • @lauriegray8781
    @lauriegray8781 2 года назад +2

    Thank you, doc

  • @kgordanier3209
    @kgordanier3209 2 года назад

    Dr Boster I wanted to mention that there is a 7th reason to switch. The DMT is losing patent protection and going generic. I am on Gilenya since the clinical trial 15 years ago. Disease and MRI completely stable all this time. 2 weeks ago my MS doctor was notified that Novartis lost their patent protection and it's going generic in the US. She would prefer me to be on something that has patent protection and not take the generic she suggested Zeposia or Ponvory each of which still have a long time of patent protection. I don't want to make any change but with a generic available my insurance company will probably not pay for the name brand even if my physician appeals. I feel like I'm being forced to make a change from Gilenya even though it's 100% working for me. I just wanted to let you know about reason number 7. I have been cc'd for 30 years. I'm 58.

  • @julie9155
    @julie9155 Год назад

    My insurance decided lol
    Trying to decide now which to take next

  • @krolle8832
    @krolle8832 2 года назад

    Was on avonex dor 7 and half years but wasn't monitored properly but I felt better but my brain was like a Christmas Tree
    Went on gylenia for five months that actually made me worst
    Now I am on ocrevus from 2018 my brain is better but damage was ready done

  • @jonplaud
    @jonplaud 2 года назад

    I had that when I first took AVONEX. This was after I was DXed. AVONEX did nothing for me and we thought it was regular. It was basically like injecting expensive water in my body. We did not know we needed a change since I went to a neurologist instead of a nuerologist who specialized in MS. That was over twenty years ago. ^_^

  • @robynaubrettehardy3604
    @robynaubrettehardy3604 2 года назад

    I was previously on Ocrevous, and now take Kesimpta, I recently developed new symptoms, and discovered that not only was I having a breakthrough now, but ooking at my old records, apparently I’d had one while taking Ocrevus too. Doctor V sent me in for lab work, and unfortunately it was positive for JCV, so I have to takethat into consideration as I weigh out wether to try Octrvus again, or give Tysabri a try. I’m scared, and I’m lost. And I haveuntil the 22 until Isee my doctor again 😅

  • @gracevallery5296
    @gracevallery5296 2 года назад +1

    Hi Dr. Boster! Question regarding coming off Tysabri for safety concerns only. Which DMT are patients normally switched too? Also how is the switch normally made to avoid a rebound relaspe?

  • @kathys8701
    @kathys8701 2 года назад +3

    Is increasing spasticity considered breakthrough activity? I was diagnosed at 64 in 2021 w/ RRMS + started Tysabri extended interval dosing every 6 weeks 6/2022. Im definitely noticing an increase in spasticity.

    • @Sara-oy5cs
      @Sara-oy5cs 2 года назад

      I'd like to know this too! Thanks

  • @pedrodacostapinto
    @pedrodacostapinto 2 года назад

    Always on top !!
    How about when you start an IRT (lemtrada, mavenclad), are you in favor of a new dosage with the same IRT or a switch to Ocrevus or other B cell depleter?

  • @bastet5059
    @bastet5059 Год назад

    Good afternoon, I am writing to you from Belgrade (Serbia). I would like to ask you for advice and help. I have been suffering from MS since 2018. Two and a half years ago, I started with Ocrevus. Unfortunately, only 12% of patients are treated here because there are no drugs for MS. So I should consider myself lucky, but I'm not. My physical condition is much worse, before the medicine I was walking alone (slowly but I could), I can't anymore. I worked out, rode the exercise bike, climbed the stairs to the tenth floor...I can't do any of that anymore. I haven't seen my neurologist since before Corona, more precisely neither before the start of therapy nor during. Those who stopped by to look at us while we were taking Ocrevus told me that the fact that I am worse is not because of the medicine, it is a progression and they haven't changed anything. It's like I'm screaming for help and they're pretending to be deaf. When we do an MRI once a year, we only take pictures of the head, I took a picture of the spine on my own initiative in a private clinic and it turned out to be full of lesions. No one paid attention to it. What would you advise me? Is it worth it to stay on therapy that makes me worse? Thank you.

  • @ARandomGentleman
    @ARandomGentleman Год назад

    I have taken copaxone for 13 years. I have had several relapses I didn't recognize until I started watching these amazing videos. I can no longer get assistance for it. My neurologist is trying to get me on humarity. It is 80 thousand dollars annually. If I can get the assistance it has a 2% chance of PML. That number kind of worries me but I'm not sure about the chances with other DMT's. Would anyone have any thoughts or advice on the matter?

  • @henp99
    @henp99 2 года назад

    After my first two ocrevus injections I have noticed my tremors are more Parkinson's like

  • @jeffm2571
    @jeffm2571 9 месяцев назад

    this all good but what ppl suffering from ppms

  • @BenLeitch
    @BenLeitch 2 года назад

    Hey Dr. Boster. I was dx'd 5 years ago with PPMS. Just received my 10th infusion of Ocrevus. Recent MRI's show no active lesions and stable disease. Is there something better???

  • @Roadwaymike
    @Roadwaymike 2 года назад

    I’m watching. Thank you. I’ve recommended your channel to some friends as well. I am always looking for more clues to this riddle.

  • @missyholz
    @missyholz 2 года назад

    My former Neurologist retired and I went with her replacement in the office at that time. He ordered an MRI, but didn’t do it with contrast. My former Neurologist always did the MRI with and without contrast. Is without contrast MRI common practice now?

  • @kathys8701
    @kathys8701 2 года назад +2

    Might having a tonsillectomy by age 12 or younger decrease your chance of JCV antibodies + thus PML?

  • @dr.froghopper6711
    @dr.froghopper6711 2 года назад

    Cardiovascular Autonomic Dysfunction and MS- if I start experiencing symptoms of this l is it indicative that something needs to change?

  • @michaelstevenson2082
    @michaelstevenson2082 2 года назад

    I was diagnosed rrms been talking the drug tecfidera since march. Feel my walking and balance getting worse is this just cause of Ms or are the drugs not working.

  • @JP-kl1mj
    @JP-kl1mj 2 года назад

    Hi Dr. Boster. How often do you prescribed mycophenolate to your patients?

  • @kevinwwfg
    @kevinwwfg 2 года назад

    Do you think a switch of DMT can only go in one direction? For instance, if a patient had a relapse while using Ocrevus (as a first-line therapy) would you try switching the patient to Tysabri or Tecfidera? Or would you only consider DMTs like Kesimpta or Lemtrada?

  • @lindseymcmullen-vickers4257
    @lindseymcmullen-vickers4257 2 года назад

    If I have PIRA does that mean it’s PPMS. Thanks Dr B . X

  • @szelinger1
    @szelinger1 2 года назад

    Can you have a relapse on Tysabri without new lesions?

  • @martinnikovski4981
    @martinnikovski4981 2 года назад

    Interesting content, 6 years after diagnosis I was told I have SPMS and it's not RRMS anymore, so I think the DMTs have not been very helpful in my case. Since I am walking with a cane, I am not offered another therapy, probably only experimental drugs. What would you advise if I have to switch off DMTs altogether?

  • @candacehillier7895
    @candacehillier7895 2 года назад

    What would you say to a patient that have given up DMTs due to medication fatigue? I know in my case the side effects made daily living very hard that it got to a point I rather deal with the disease then the medication. I feel better, but I know I’m walking a fine line with my progression, but the idea of going back on medication puts me to tears.

  • @komoonkh
    @komoonkh 2 года назад

    Ive been taking Rebif shots for 5 years now. It works for me (or at least no attacks and very low activity on mri). But I have problems with anxiety and I think it is supported by the drug itself and its form of taking. I get annoyed more and more by taking shots 3x a week. I would like to try something more comfortable but its not that easy to leave a drug that works for me. Teriflunomid sounds good to me, but I am no expert. They say it ever works better for male pacients than female. Is it possible?

    • @Plottoberry
      @Plottoberry Год назад

      Im taking Copaxone. I understand the 'hit hard and hit fast' mentality but if this works for me, I'll keep taking it. Id like to enjoy a good immume system while I can... I think I will also get annoyed by taking the shots, I also do it 3x a week.
      Which medicine do you take now?

  • @anagongs6353
    @anagongs6353 2 года назад

    How about age? I am 55, been on Copaxone - my Neuro said at 60-

  • @susannicholson3493
    @susannicholson3493 2 года назад

    How do you know when a secondary med (Ampyra) quits working?

  • @nicolabroccoli6832
    @nicolabroccoli6832 2 года назад

    I have just been diagnosed with breast cancer 5 years after alemtuzumab. Do I have any treatment options if I get a relapse?

  • @ThereseVaglio
    @ThereseVaglio Год назад

    Is there such a thing, aging out of treatment?

  • @argentinarodriguez4170
    @argentinarodriguez4170 Год назад

    Does a person with MS need to have a lumbar puncture to get a diagnosis?

    • @AaronBosterMD
      @AaronBosterMD  Год назад

      here you go: ruclips.net/video/0csvVXatlFo/видео.html

  • @karinafoster6974
    @karinafoster6974 2 года назад

    I really appreciate all your videos. I love your personality too. I have been on 4 different MS meds in 15 years. Each med has given me bad side effects. I have had MS attacks while taking all 4 meds ( Copaxone, Tecfidera, Tysabri, and recently Abaugio). I recently talked with my MS Dr about going off all meds.

  • @hilarykerr7383
    @hilarykerr7383 2 года назад

    👍👍👍👍👍👍

  • @JoseRivera-wj2rd
    @JoseRivera-wj2rd 2 года назад

    Hey DC I'm having a problem with ejaculation. Since I relapse last year haven't been able to ejaculate.

  • @kathys8701
    @kathys8701 2 года назад +3

    ❤❤❤❤❤❤❤❤❤❤❤❤❤❤🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥🔥👍👍👍👍👍👍👍👍👍👍👍👍👍👍👍

    • @caraaliseo8586
      @caraaliseo8586 2 года назад

      Dr. B, you are awesome! Thank you. ❤️

  • @uzer-95
    @uzer-95 2 года назад

    Доктор. Займитесь прихосоматикой, если вы Действительно хотите помогать людям.. Ведь когда пациент перестает нервничать, у него пропадают осложнения РС. И ТОГДА ЛЕКАРСТВА,КОТОРЫЕ НАПРАВЛЕНЫ НА СУПРЕССИЮ ИММУНИТЕТА, *НЕ НУЖНЫ*

  • @Roadwaymike
    @Roadwaymike 2 года назад

    💯0th

  • @hookerhawk22
    @hookerhawk22 2 года назад

    Ocrevus is the only dmt for me. I wouldn’t say it’s working well, as I feel I’m only getting worse. I have ppms and there’s no other dmt for me. Do you think I should keep taking it?