I Have Chosen What Treatment I Am Going On...
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- Опубліковано 30 бер 2022
- After a long time waiting, I have finally been given my options for what drug modifying therapy (DMT) I can go on to treat my multiple sclerosis. The options being Tysabri, Ocrevus and Kesimpta. In this video I wanted to explain to you my decision and the thought process that went into that choice in case it helps you at all, when you have to decide.
Please let me know in the comments below your experience on any of these drugs or any others that have really helped you. Or even if they haven't worked I would love to hear from you!
NEW Video on how my treatment is going! ua-cam.com/video/mLKdrSeSzX0/v-deo.html
do alot of cardio little wight training and eat anti inflammatory food and cupping therapy
iv been on that plan for 4 years no relapse and i was in the best shape of my life last year i’ve been lazy eating shit food no training and i had a minor relapse
am now on kesimpta and planning to come off of it after a year and return to my old healthy plan
I went on ocrevus a few years ago, and it didn’t work out for me that well. The drug couldn’t keep my cd19 levels at zero for six months. My cd count began rising after 5 months, so I switched to kesimpta. I’ve been it over a year now. It is successfully holding my cd count at zero, and I’ve had no new relapses since being on kesimpta. My advise is to have your neurologist keep a check on your cd levels while taking ocrevus. Kesimpta is really an honest blessing for me.
I have been prescribed Ocrevus. I haven't started treatment yet. I am somewhat stalling because I want a second opinion. I do not like my doctor and only stuck with her because I thought it would help my disability claim. She never really kept me inform about anything. Prescribed me two other medications early on, then when I asked for a diagnosis for the disability office, I learned these two other medications were not even for my MS, they were for another condition. She didn't even tell me! Plus, I have never been shown an MRI or anything. I am getting a second opinion before I start any treatment. This is why I am watching videos like this. To get information from others with MS. Not sure what you mean by cd19 levels. I've never heard of that. See.... My doctor doesn't tell me anything.
Oh my i actually went on tysabri..which i felt so well both mentally and physically.. now after 6 years i just control what i eat and drink
Thank you for posting this video. Have been on Tecfidera for nearly 8 yrs but now new activity and been offered the same 4 next line drugs as yourself. Similar thinking over each and leaning more towards ocrevus also. Thank you for your help and hope this dmt is working well for you 👍
i've been on Ocrevus since September! i've had so many MRIs this year and prior to starting treatment, i was getting about 1 new lesion per month. But no new lesions since starting Ocrevus in september so it seems to be working!
Wow that's great news! Sounds like yours was very active and Ocrevus has managed to halt it! Were you having new symptoms all the time with the relapses?
@@tomgarbett77 i was diagnosed last summer with MS and i had about 20+ lesions in my brain that never really caused me any symptoms except for the occasional partial loss of sensation and some burning sensations in my leg, which i always assumed were some normal nerve issues or something. The only reason i had done an MRI that summer was because i was dealing with a chronic headache for an entire month and they found the lesions by chance on the MRI. Near the end of August, I got my first symptomatic lesion (in my cerebellum) and that engendered a whole slew of symptoms such as weakness in my left arm and leg, vertigo, numbness in my mouth. since then, i'm still dealing with some of the damage that that cerebellar lesion caused (vertigo and weakness in leg) but i have no new or active lesions
@@cherry2619 ah right well sounds like you've been through it a bit recently! Wishing you all the best and hopefully you make a strong recovery from this recent relapse!
@@tomgarbett77 thank you!! I hope your ocrevus infusion goes well!
@@cherry2619 thanks! Will definitely be sharing a video about it
I have just started tecfidera. Was doing well but just had bloodwork done and my liver levels are elevated. This could be due to shock but once I retest I’ll know for sure if they don’t go down and may have to switch. It’s all a little scary especially if your like me and don’t react well to meds! I wish you well on your journey with Ocrevus that is my next line of defence if tecfidera doesn’t work out!
Well I hope Tecfedira does work out well for you, but at least you are being monitored and like you say you can always go onto Ocrevus if need be. Wishing you all the best!
Thank you so much. I am more or less at the same stage of making a decision on DMT treatment. I have not been on any medication since 2015. I was diagnosed in 2011 and was on and off rebif but decided to just try and approach it from a well being perspective. However, last year I suffered from Optic Neuritis in my left eye. Although it had recovered my neurologist is recommending that I go on either Kesimpta or Ocrevus. It’s quite daunting when you have avoided medication for so long but your video has definitely helped and I am leaning towards Ocrevus for the same reasons. I hope your infusion went well. Best wishes, Asim
Hi Asim, great to hear that my video is helping you! But yes I do think Ocrevus is a happy medium and is maybe necessary to go on, just to make sure you halt any further progress of the disease. Wishing you all the best!
Best wishes to you , 🍀⭐. 💌🌟
I've done a year of Ocrevus, so far so good, I have got reactions from it before (itching, rashes) but I just tell someone and they give me something to counteract that straight away. Infusion day is a chill day but a long day, bring snacks and something to do, good luck Tom!
Nice thank you for the advice! I will definitely be taking along some snacks and a laptop to keep me entertained! Glad it's gone well for you.
All the best 👍. Please give an update on how ocrevus goes for you.
Thanks! Will definitely be posting again soon about it
I go for my first full dose in a couple weeks with Ocrevus. I've had no issues at all. No side effects so far. No repeat MRI yet. I think you made the right choice of going on a DMT. Best of luck to you. Keep us posted.
Thanks for adding your experience! Glad it all went well for you. Keep me updated with how your next MRI goes!
I hope you are doing well.
I am doing good thanks! I hope you are too?
I know you posted this a while ago and you likely have updates but I am on Ocrevus. I started on
Copaxone which is a self injection medication, I am not afraid of giving myself shots but I have another disorder and Copaxone wasn't a fan of.. so I had to stop that. Then my neurologist but me on Aubagio, which is a pill but that activated my other disorder so I was not on that long. Then my neurologist put me on Tysabri. I was on that for a few years but it stopped working plus it was messing my liver and only working for maybe 2 weeks then it was like I was not on anything. I was getting wobbly and dizzy (which I know is an MS thing but I wanted to feel "normal" for longer than 2 weeks. Ocrevus seems to be working.. for the most part. I don't start feeling "off" until around the 5 month mark. I hope it is working for you. Sorry about my long ramble. MS sucks but at least there are treatments available.
Great job making a decision! I just started Kesempta a few weeks back! Husband is kind to give it to me:) Love convenience of not going to infusion place. Feel great so far and also wanted to be aggressive w/ treatment. I believe the science behind it & feel like I needed to be on a medicine asap to tame this beast. Also yoga has helped me a lot!! 3x a week. Also do free weights to stay strong.
We can do this. Love the videos
Colleen from CO💙
Hi Colleen, that sounds great I'm glad Kesimpta works well for you! I am terrible with needles and my girlfriend isn't much better so it was more convenient for me personally to have the 6 monthly infusion. Yes I would definitely stick to the Yoga and weights as they can be a massive help in lowering stress etc which all helps!
I had my first Rituximab (very similar to Ocrevus) in January and so far so good. Will have my first follow up MRI in June prior to my next infusion. Wishing you much success on Ocrevus!
That sounds good! Hope you get some good results from your follow up MRI! Keep me updated and thanks for the good wishes!
Thank you for sharing your experience with Rituximab. I also chose the same treatment and was infused in November.So far so good with myself also.I have completely changed my diet while reducing the stressors in my life and hopefully we can continue with this life Jouney. God Bless
@@jeffkameny9492 Sounds great Jeff! What dietary changes have you made? As you'll have seen in my videos I'm a huge advocate for the effect diet can have
@@tomgarbett77 Hello Tom. First I want to thank you for sharing your Journey and experiences. With the help of my son and after diagnosis in October I radically changed to eating a lot of raw vegetables,cut out all the caffeine cut out almost all red meat and very little dairy and greatly reduced my refined sugars. I went from 205 to 185 in 4 months and I feel fantastic. Have not had any relapses or have felt I’ll in any way since the infusion. Energy level is high and I’m sleeping better. I’m 54 years old and feel younger everyday....
@@jeffkameny9492 That's fantastic! Glad you're feeling so good ad I agree that those dietary changes will really help! Keep it up! I would also suggest looking at completely removing dairy and also gluten as those are two food groups that have been shown to have a big impact on the disease. But just make sure you're enjoying it and sticking to it!
Hi Tom your doing wonderful I think made right decision Tysbari has loads of side effects that are worst then what you have !Relapsing remitting comes and goes back every couple years even ten years later then take steriods right away and goes back in remission with or without medication this happens but steroids do work wonders Your fine Tom you look great 👍
Thanks Juliette, yes I think I have got the right balance with Ocrevus. I know I am doing great naturally but at this stage I can't pass up on the drugs either, because I realy want to halt the disease as much as possible at this early stage which is vital!
@@tomgarbett77 Tom understand because only have it year so want tackle it now You are doing great naturpatic maybe it's all you need one day Watever case is I wish you best with all heart Im not taking any drugs I'm doing naturpatic lot of vitamins though 💗
I am not taking Ampyra all that well. Mental alertness was not there the entire weekend.
did the 1st year of Mavenclad and regretted it. I was on Gilenya for 8 years and rebounded horribly. Neuro suggested Mavenclad but I had 3 horrible relapses that 1st year (including going deaf from the left ear). Now Im going to start kesimpta. Hopefully it works and stabilizes me.
Sorry to read that... How is Kesimpta for you? Have a great day /rest of day
@@AD-rn5hh I love it! Ive been stable sinve I started it
@@franceszapata951 great so good for you 👍😊 did it improve some of your symptoms too?
@@AD-rn5hh I did change my diet and incorporated strength training in my exercise routine. I think my neuropathy and fatigue have improved due to a combination of those two things and kesimpta
Hey Tom, you dont think about Mavenclad ?thx
Honestly the risk of PML with Tysabri is much lower than all the risks associated with Lemtrada so I personally am not even considering it.
Brother what do you think.. in this time of era.. we can take a look of 13 bollon yr past space via NASA telescope, but in earth we don't have a cure for some disease, why human don't focus on thos important thing, a human life is more important then anything else . Please reply..
Yes I completely agree, and this is a thought that kept going through my brain when I was first diagnosed. I was thinking how can we have all this technology in this world and yet no cures have been found for MS, Cancer and many other diseases. It i crazy and possibly to do with the fact that if we cure everyone then pharmaceutical companies won't be able to make any money!
@@tomgarbett77 recently diabetes got cure via SC therapy..
Brother can we make a better community where can people not only help each other also be aware of what's going on for us.. please think about it maybe your thought cab be very impactfull..
@@babaipuspendu752 Oh really I hadn't heard that? But yes we need to all keep pushing to find a cure!
@@tomgarbett77 yes just search for it.., and can u please give your insta I'd..
I was diagnosed with MS a month ago. I refused to go on meds so instead changed my diet to Gluten free and dairy free. I have had zero symptoms since doing that. Medication is NOT the answer, treating MS naturally is. It worked for me.
Going a month or even a year (like many people do) with no symptoms doesn’t mean the disease isn’t progressing in the background. I can assure you that with this disease medication IS the answer, it’s just that everyone responds differently and has to find which drug works for them. Of course none of that matters if you have a poor sleep schedule, eat crap foods, don’t exercise and are obese and a healthy diet is a must. Cutting out gluten and dairy is a great choice. Best of luck!
There has been 0 reaserch witch has showed that any diet helps with progression with ms. Good diet is always a benefit. Please, dont misguide patients.
If there is no simptoms, it doesnt mean its not progressing.@BorisG13
Your brain has caused you to believe you know everything when you know nothing. Let me know how you get on, in say, two years when someone in your family (for instance) passes, and then you develop disability, your brain is saturated in lesions, and you can’t do what you love. Don’t cut off your nose to spite your face. Arrogance can be fatal when you have ms. Take the strongest meds available - Tefidera is useless. Kesimpta - horrible, but effective. Trust me, I used to think like you.