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

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.

Welcome!!!

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.

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

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.

I have been taking Tecfidera since March 21, 2014. I'm in my 7th month.

Like Sparky I have had the minor flushing side effect but it's much less severe now and hardly ever happens anymore.

When taking Tec you must have your blood checked at least once a year. My Neuro does it every 6 months.

Tec is supposed to lessen the frequency of flare ups so you really won't notice an improvement but you will notice the frequency of flare ups will be less. Guess that can be considered an improvement.

Some folks have had GI side effects (diarrhea, nausea and cramping). I have not had that side effect. The flushing occurs most often when I don't eat before taking my pill. It's tolerable although uncomfortable. Feels like a sunburn but does go away.

I hope your insurance will cover the Tecfidera. It's very expensive. I have only Medicare so I've been fortunate enough to qualify for Patient Assistance through Biogen.


Good luck!

I used tecfidera for a week during the end of September 2014 and I got these small red spots on my body and they kept on increasing. When I went to the neuro for my 4th ON, I told the doctor about these red spots ans she asked me to stop tecfidera. After treating me for ON, they asked me to give another try with tecfidera. I hope it works this time.

Thank you very much for your inputs and advices

I started out with optic neuritis and dizziness. I tried Rebif and lasted for 2 weeks -- it made me sick as a dog and couldn't get out of bed. Also had a deep black depression. Then 6 weeks of Copaxone which gave me rapid heart beat, anxiety and terrible headaches.

This was all before pills so I went with the big guns and took Tysabri. I immediately noticed my vision got much sharper. No relapses (knock on wood). If you are JCV antibody negative I would recommend Tysabri as a first line drug. I am SO happy with it.

I always wanted to be on a DMD to prevent any progression of any kind.

Good luck with your choice!😊

A bit of bad news for TECfedera!!!!


http://www.bostonglobe.com/business/2014/10/22/biogen-idec-reports-death-patient-that-had-taken-its-multiple-sclerosis-pill-tecfidera/xrAtOBsxA7eHZN3BB0phxJ/story.html

Sorry..