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Old 10-21-2014, 06:11 AM #1
Rajkp Rajkp is offline
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Default Starting with tecfidera

I got 4 attacks of optical neuritis in the last 3 months and the doctors are not sure if it is MS or not as it is not common to have repeated attacks like this. But, they are going to pot me on Tecfidera first and if it doesn't help then they will go for tysabri or gilenya.

But I am really scared about the side effects of tysabri which is JCvirus causing PML and gilenya causing slow heart rate..

I really can use some advice and support from you guys.

Thanks and Regards,
RajKP
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SallyC (10-21-2014)
Old 10-21-2014, 09:56 AM #2
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I'm not taking any of those meds Rajkp, but I hear that Tecfidera only helps to
slow the progression of MS and doesn't really cause any improvements. It could,
however, cause your ON attacks to stop? I think I'd give it a try.

Others who are on TEC, hopefully will chime in with their words of support.

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Old 10-21-2014, 11:30 AM #3
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Hi Sally,

Thank you for your reply.
If you don't mind, I want to know how it is without using any DMDs for MS.
Will this be any difference in comparison to not using them .
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Old 10-21-2014, 12:27 PM #4
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Quote:
Originally Posted by Rajkp View Post
Hi Sally,

Thank you for your reply.
If you don't mind, I want to know how it is without using any DMDs for MS.
Will this be any difference in comparison to not using them .
I have used some DMDs in the past... 1st Avonex (couldn't take the SEs and
after 7 months, stopped it. Took Copaxone for 10 mos and it wasn't working
for me, so stopped it also.

I am now SPMS, in a scooter and doing pretty well....staying stable.
This is my 50th MS year.
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jprinz99 (10-24-2014)
Old 10-21-2014, 03:15 PM #5
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Quote:
Originally Posted by SallyC View Post
I have used some DMDs in the past... 1st Avonex (couldn't take the SEs and
after 7 months, stopped it. Took Copaxone for 10 mos and it wasn't working
for me, so stopped it also.

I am now SPMS, in a scooter and doing pretty well....staying stable.
This is my 50th MS year.
I am a bit worried with my situation. I do not want to use the second line medicines which are having adverse side effects. I hope tecfidera works for me.

I am 28 and recently got diagnosed with MS. The doctors say my repeated ONs can be because of MS. It's an unexpected twist in my life and I hope god gives me the strength to deal with it
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Old 10-22-2014, 09:52 AM #6
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Hi Raj! Hope the Tecfidera slows down the frequency of the ON attacks, or (fingers crossed) stops them completely.

I've been on Tecfidera since Summer. Only side effect I've had is a flushing (reddening) of the face and sometimes upper body, which may or may not be accompanied by a sunburned feeling. For me, each side effect event lasted maybe 20 - 30 minutes, and went on for maybe 3 months (lessening over that time).

This, coming from someone who very rarely is affected adversely by any medication. I did 3 years of Avonex with no flu-like symptoms, which can have some people laid up for days.

Because I wasn't having flare ups before, I cannot say whether the Tecfidera is working for me or not. I just hope it keeps flare ups from ever occurring, or if I'm Secondary Progressive (which I but not my neuro believe), keeps me from getting worse. I'm still very active, driving, hiking, some slow jogging.
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