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  • What treatments have you tried for MS? What works for you?
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Treatments for multiple sclerosis

What treatments have you tried for MS? What works for you?

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avatar Courtney_J

Courtney_J

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02/17/2021 at 11:11 PM

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avatar Courtney_J

Courtney_J

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Last activity on 08/08/2022 at 11:09 AM

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1,339 comments posted | 96 in the Treatments for multiple sclerosis group

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Hi everyone,

How are you doing today? I thought I'd open this discussion so we can talk about multiple sclerosis treatments emoticon cute

What treatments have you tried for MS? What has worked for you?  Are there any treatments that haven't helped your MS? Have you tried any alternative therapies or treatments? 
@HashnMemms‍ @Corrie‍ @Kbassett‍ @P.Martin‍ @doberman‍ @Dlaw365‍ @Suebee40‍ @reighnstorm‍ @krisluvinglife‍ @longhauler‍ @Terri4872‍ @Tracy23‍ @BeckyC‍ @MaeganMonterose‍ @Twig57‍ @sando0826‍ @vaiano0427‍ @SARAHGARNER‍ @JulieM8200‍ 

Feel free to share your experiences and advice here!

Take care,
Courtney

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avatar mikeand75

mikeand75

10/23/2021 at 9:57 PM

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avatar mikeand75

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Last activity on 05/06/2025 at 11:27 PM

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Hello Courtney. How are you doing? I started using Betseron, then my neurologist changed me to Copaxone and now I am using Ocrevus. Thank you and have a great weekend!!


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2021-10-23 21:57:47

avatar MyMS55

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03/27/2022 at 3:35 AM

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avatar MyMS55

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Last activity on 11/18/2024 at 1:12 AM

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60 comments posted | 21 in the Treatments for multiple sclerosis group

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I was just removed from all disease modifying meds due to age and disease progression.

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Melissa Vemi


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2022-03-27 03:35:20

avatar Racquel25

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04/01/2022 at 3:56 PM

avatar Racquel25

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Last activity on 04/01/2022 at 3:31 PM

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I started on Tecfidera, then Gilenya and now am on Ocrevus. Thanks and Happy Friday!!


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2022-04-01 15:56:54

avatar MaryAth

MaryAth

04/06/2022 at 4:40 PM

avatar MaryAth

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I have been taking Gilenya for about 5 years and prior to that, Copaxone. My MRI's have been stable since I've been on Gilenya. However, I have noticed worsening of symptoms in the cognitive sense and just feeling bad at times during the day, for the past year. My doctor recommended the new drug, Kesimpta. Although my MRI didn't reveal anything new, he said there could be activity on the part of the brain that we can't see in an MRI. I have until May, when my appointment is scheduled, to start Kesimpta. If your interested in what Kesimpta is "thought" to do:

Here’s what goes on with relapsing MS: The immune system uses certain cells, like B cells, to help fight infections. These cells can become activated in the lymph nodes—the communication hub for the immune system .But there’s a miscommunication that happens in relapsing MS. Instead of protecting the immune system, these cells mistakenly attack the body’s myelin—the fatty, protective covering of the nerves in the brain and spinal cord. Here’s what KESIMPTA does: Although it’s not known exactly how KESIMPTA works in relapsing MS, it’s thought to travel specifically to the lymph nodes based on the way it’s taken. From there, it’s thought to reduce the number of B cells that are thought to play a role in relapsing MS. This targeted approach to the lymph nodes is thought to limit the impact on other B cells your body needs to maintain immune function. 


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2022-04-06 16:40:14

avatar Jan1987

Jan1987

11/02/2022 at 7:54 AM

avatar Jan1987

Jan1987

Last activity on 07/13/2024 at 7:20 AM

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3 comments posted | 3 in the Treatments for multiple sclerosis group


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Hi Courtney, I've lived with MS for over 35 years. Had Avonex, Betaferon, Copaxone, now Gilenya. Haven't had a relapse for 15 years. I secondary progressive now I presume. Use a wheelchair. I can't tell you what I think works. My opinion is maybe nothing worked, as my disease has slowly progressed and at 58 need care. Still home with my wonderful husband.

Would love some feedback on effectiveness of DMTs like Gilenya at this stage of MS. Thanks

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JH


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2022-11-02 07:54:51

avatar Somya.P

Somya.P

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07/10/2024 at 2:10 PM

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avatar Somya.P

Somya.P

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Last activity on 05/07/2025 at 5:37 PM

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616 comments posted | 19 in the Treatments for multiple sclerosis group

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Hi everyone,

How are you doing? 😊

I wanted to bring back this important discussion on the treatments you've tried for multiple sclerosis and what has worked for you. We would love to hear your experiences and insights.

@Lmurray @Lolopez @Loulou52 @Lourdesp @Lovemyself @lovescience81 @Lstukenberg @Lydia65 @LynneBrush @lyoung_1967yahoo.com @Mackay @MamaLHL @Mandee916 @Marnitta @Marque @Mellynn618 @Midlskool @Mindyb @Mistylide2018 @mjpalmer777 @Mklien @Mleetx @mlyons7961 @Morgandr @mredfern @mredfern89 @MrzFlem01 @MsGheryll @MSgirl @MsKris @Msteuber @Mswarrior53 @Mtootle74 @MTraynor @Namrog71 @Nataliettu @Natheaton @Nbonilla101208 @Neena53 @Nholbr @Nicoleulin @nnkgirl @nrissky66 @Nxlevel @Orkababy23 @Pakerfa33 @Parker98 @PaulaPughRomanaux @pbwyatt @Peaches65 @peachia @Peruvian @Porda79 @purplegoat13 @rabbitramsey7 @Redbird50 @RessieBare02 @Rgardnr @Robin10 @Robroncos52 @Ronnie123 @RubyDarling @Sarahann @scbuckman @ShellyEdwards @SHELLYZ68 @Sischo12 @Skmurken @snowwhite3 @So1982 @Soccer081105 @sso1961 @Stephijocastro @StephS @Steve67 @Sueof3 @Summermartini @Sundrop @Suzhussey @Tabace @TaG2024 @TamiHelen @Tamilee5376 @Tanjawil7 @teeleedee712 @Timbo1186 @tm8248 @Totiebug99 @Traci66 @Tracylct @trinkal1984 @TrishAlbrecht9 @Trishalina @twiceequal17 @Victoria.nestor @violetwholt939 @Warc04 @Wgthetaz @wjewels82274

Have you tried any new treatments or therapies since you last shared?- How have your experiences with MS treatments evolved over time? What advice would you give to someone newly diagnosed with MS about managing their treatment?

Your experiences are invaluable to the community, so please join the conversation and share your journey with us.

Take care,

Somya from the Carenity Team 🌼

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Somya from the Carenity team


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2024-07-10 14:10:33

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avatar tm8248

tm8248

07/11/2024 at 12:36 AM

avatar tm8248

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Last activity on 03/13/2025 at 7:00 PM

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@Somya.P my first treatment was rituximab infusions, back before my wheelchair and assisted living. Rituxin, the non-generic form, was nicknamed “the walking MS med” because it helped MS patients continue walking for a long time. I kept walking for a longtime, but eventually I succumbed to using a wheelchair. Now, I can’t even stand up. I don’t think I have done any treatments in quite a while, but my memory has taken a big hit so I’m not sure.


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2024-07-11 00:36:20

avatar MsGheryll

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07/11/2024 at 6:48 PM

avatar MsGheryll

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@Somya.P I am continuing with Ocrevus. My next infusion is July 26, 2024. I am now 70 years old my current Neurologist is keeping me on this treatment as I have not had a flare up in a few years and due to the Optic Neuritis and Uveitis being quiet fora few years.


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Cheryll Gordon


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2024-07-11 18:48:21

avatar Lolopez

Lolopez

07/28/2024 at 11:36 PM

avatar Lolopez

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@Somya.P I've been on Copaxone, Avonex, Gilenya, Betaseron. Avonex too many side effects, Gilenya gave me encephalopathy due to a history of hypertension, and I was in a coma for 4 days after seizing. Copaxone I had an allergy too causing hives. Now on Vumerity since 2022; doing well, no more lesions. Last relapse in 2021 after I had been off of meds for several years which was my choice. I have trouble walking, shocking sensations in my legs, balance issues, numbness and tingling in legs. Last count in 2021 mri showed 26 lesions in brain and cervical spine. My best suggestion is way all your options for treatment. Know your body. Get 2nd opinions, lean on people who love and care about you. Don't overdo anymore. Take good care of your needs first.


What treatments have you tried for MS? What works for you? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/what-treatments-have-you-tried-for-ms-what-works-for-you-3085 2024-07-28 23:36:34

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