Tecfidera - Is anyone else taking this? Any experience?

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Hgood623

05/28/2019 at 4:07 AM

Hgood623

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Hello, I was just diagnosed with MS 2 weeks ago and I have since started taking tecfidera. Is anyone else taking it or have you taken it? I was supposed to start the higher dose today but I'm afraid to because part of me feels like my brain is in a fog and I don't want it to get worse. I'm afraid of getting PML. I just don't know what to do!

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looking4

05/29/2019 at 4:10 AM

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looking4

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My doctor was contemplating that drug, but ultimately we went with gilenya because he said it has shown to lower relapse rates more than tecfidera... however, I would love to know how you are doing with it...

I had brain fog for a while but it comes and goes with RRMS.

What is the main issues you experiencing with MS currently?

Also this article may be of a good read for you. It talks about tecfidera and gilenya studies: https://multiplesclerosisnewstoday.com/2018/08/30/tecfidera-gilenya-equally-effective-but-more-ms-patients-stop-tecfidera-study/

Tecfidera - Is anyone else taking this? Any experience? https://www.carenity.us/forum/other-discussions/your-opinion-on-multiple-sclerosis-treatments/tecfidera-is-anyone-else-taking-this-any-experience-1055 2019-05-29 04:10:06

Hgood623

Edited on 05/29/2019 at 5:23 AM

Hgood623

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My doctor didn't recommend anything else but Tecfidera, it's the first medicine I have been on for MS but I have thought about looking into other meds just to see what my options are and what other people are saying about them. I don't like that it can cause PML..that is scary! My doctor said its very rare but still there have been cases of people who have died from it!

My current issue is just heaviness in my legs on and off. A month ago I could hardly walk and after already being cleared for MS just 2 weeks prior because there weren't lesions in the part of my brain they normally would be in for MS patients my doctor told me I needed an MRI of my neck to look at my spine and come to find out there are 2 inactive lesions at the top of my spine in my neck. I was on the steriod pack to help my legs and it worked! Thank God I had the MRI of my neck because we all just assumed it was an issues with my back causing my problems!

As for the Tecfidera I haven't had serious side effects from it like I could have. The first day I took it I became really flushed and it lasted for about 40 minutes or so and that's it. No digestive issues and no nausea!! I am just afraid to double the dose because I've read thats where people start to experience the side effects. I'd hate to switch medicines since I'm doing so well with it but I cant help but to worry about PML!

Emma2190

07/11/2019 at 8:12 PM

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@Hgood623‍ I was allergic to it, even though it was supposed to be a rarity. Well it happened to me. So I can't really offer any helpful insight on it and currently on Rebif injections.

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BamaGirl50

04/19/2020 at 7:57 PM

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I've been on Tecfidera 240 mg for MS for over two years with no side effects or other issues. I had tried the transfusions and injections with side effects.

BWroke

04/28/2020 at 2:01 AM

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I have been taking Tecfidera for 5 yrs. I still get flushing sometimes. Feels like a sunburn on my face and chest for a while but not bad.

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Purple17

04/28/2020 at 2:32 AM

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Last activity on 09/29/2024 at 5:42 PM

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@Hgood623 I have been taking Tecfidera for over a year. I was on Rebif. It has been wonderful for me. No side effects. I have had brain fog from just having MS period. It has helped me all the way around. It is the best drug I have ever been on. I can’t say enough good. But that is just my opinion others may feel differently. I hope you get better.

LizziB

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04/15/2023 at 12:40 PM

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Hi @Hgood623 @looking4 @Emma2190 @BamaGirl50 @BWroke @Purple17

How are you guys doing today?

I want to encourage everyone to post their treatment reviews here https://member.carenity.us/medications

This new feature is where Carenity members can leave their opinions about side effects and medicine efficacy.

Take care,

Lizzi from the Carenity team

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BWroke

04/23/2023 at 9:54 PM

BWroke

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@LizziB I have been taking Tecfidera for 9 yrs. It was very expensive but I guess it is working.My ins. said they no longer pay for the drug so I thought I was going to have to stop taking it because of the $6,000 a month it would cost. So I started researching on line and found a generic for Tecfidera "Dimethyl Fumarate" It showed to be expensive also. I saw an ad showing it was available at H.E.B Specialty Drug for about $33.00 for 60 /240 m. capsules . I thought it was a come on or a misprint so I called them. That was the cost. So now I get a 3 mo. supply for $98.00 . They are very nice and go out of their way to help you. This is also with NO insurance involved.

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LizziB

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04/26/2023 at 12:04 AM

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LizziB

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@BWroke Costs of medications and how health insurance works is always difficult to navigate. Sounds like you had a good outcome for the online search!

If you haven't so already, I encourage you to give your opinion on your medication here: https://member.carenity.us/medications

Take care,

Lizzi

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Tecfidera - Is anyone else taking this? Any experience?

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