Tecfidera

[JSSimp]

Started Tecfidera on today I am praying for a great outcome. Pls let me know anyone thoughts on med.

[Neworleanslady]

I was on Tecfidera about 2 years age and it was wonderful. I got off bc it was lowering my WBC count too much after a while. But i loved it while i was on it! Good luck-

[JSSimp]

Ok. Thank you! I see New Orleans as your profile name. I use to live in the area and really missed the food and the friendly ppl.

[TonyiaR7 in reply to JSSimp]

I love the food but it now does not love me. Even the simple red beans rice (and sausages), the shrimp ( just the smell and taste is surreal).

[JSSimp in reply to TonyiaR7]

Since been diagnosed I only eat Fish & Shrimp with lot of vegetables. The diet change was very easy since I never ate a lot of red meats.

[RoyceNewton]

I love it

[JSSimp]

Are you still on it and how long have you been

[Kenu]

Did not get along with it, was only on it 6 weeks. To many side effects. Went on Aubiago two and half years ago doing great 👍 Ken 🐾🐾🙏

[JSSimp]

Ok. I am praying for a great outcome. Hopefully I won’t have to juggle with multiple meds. Thank you!

[greaterexp]

I'll keep you in my prayers!

[JSSimp in reply to greaterexp]

Thank you! I will do the same for you on this amazing journey God has us on.

[greaterexp in reply to JSSimp]

Thank you! I"m so grateful! Your prayers are precious to me.

[JSSimp]

You are welcome!

[jorrell]

Tecfidera wasn't bad at all for me except for the hot flashes (women rejoice that it can happen to men as well! Taking a fatty meal such a full milk before you take Tecfidera makes you almost immune the the hot flash, assuming you drink it shortly before you take the pill.

After two years, I had to give it up to allergic reactions like continual nasal discharge, itchy eyes, and yes, the weakness of allergies.

I have gone to Ocrevus, for 2 years now... I'm not sold yet.

[JSSimp in reply to jorrell]

😂in the hot flashes for men. Good to know. I pray that Ocrevus works well for you. A friend I know started it last wk. Praying all goes well. Thanks a bunch!

[jorrell]

The main issue is the hot flashes, when I started, I had one so bad that I lost 2 pounds over 4 hours. Eating something a little fatty before taking the pill will reduce or eliminate that side effect. Yes, I said 2 pounds of fluid loss through sweating in four hours! I hope the Tecfidera works for you... I did NOT have a relapse while taking it!

[JSSimp in reply to jorrell]

Wow!! Earlier this morning I ate and took it 30m later and will repeat the same for dinner. Thanks for al your help!

[IFwczs]

Been on Tecfidera 4 years before, on Ocrevus now. Do you have RRMS?

[jorrell in reply to IFwczs]

Yes-ish, not diagnosed with progressive, but Neuro is starting to think again....

[IFwczs in reply to jorrell]

What do you think? Have you had relapses? My neuro diagnosed me with RRMS 6 years ago. Not sure why. He decided since I slipped and fell on sheer ice in the middle of the night 7 years ago, it must have been a relapse.

I was on Tecfidera for 4 years. Unless you have RRMS, it's absolutely useless.

[JSSimp in reply to IFwczs]

I do have RRMS. Thanks for the info!

[jorrell in reply to IFwczs]

I have not had relapses on Tecfidera or Ocrevus. One issue though that I didn't mention earlier, on Tecfidera, I continued to gradually degrade without new lesions.

[IFwczs in reply to jorrell]

This is exactly what happened to me on Tecfidera!

[JSSimp in reply to IFwczs]

Praying you are better now. Thank you!

[JSSimp in reply to jorrell]

I am so sorry to hear and thank you for the info. Praying you are feeling better now

[JSSimp]

Why did you change and I do have RRMS. I was diagnosed in March 2020.

[jorrell in reply to JSSimp]

I changed for a few reasons, the first was allergic reactions that are very rare but mostly tolerable. My Neurologist said "Why are you still on Tecfidera?" We need to put you on Ocrevus. Kind of interesting that today I read that the FDA has approved a generic today. I have no clue how much the generic will cost.

[JSSimp in reply to jorrell]

Ok. Interesting information to know. Thanks for sharing!

[vsn15nml]

I was on Tecfidera from 2013 (at diagnosis) until 2018, and I loved it! I only experienced flushing (with every dose), but it was less severe after I stopped eating gluten. I had to be taken off it when we noticed more disease activity, and I was swapped to Tysabri (only to develop antibodies after 8 months).

I hope Tecfidera treats you well!

[JSSimp in reply to vsn15nml]

Ok. Thanks for the information. I will remain hopeful that Tecfidera will work great for my body and I will be able to give a great testimony in the near future to all my wonderful MS family. We are in this fight together and we will win.

[Texasshelle]

I’ve been on it for 6 years. It has worked well for me.

[JSSimp in reply to Texasshelle]

Awesome news to hear. I believe the results will be great for me as well. Thanks!

[jbdesi]

i have been taking it for almost 2 years happy it took me off iv's and injections i have tolerated tecfidera no major side effects had three mri's brain,back and neck glad my neuro was continuing me on tecfidera hope it helps as i like it

[JSSimp in reply to jbdesi]

Thank you! I am approaching it in a positive way knowing all will work out.

[cindyrn68]

I’ve been on it for 3 years. Love it!

[JSSimp]

Thanks Cindy! I am looking forward to great results as well.

[Hidden]

Good luck when Ichanged meds had to try different ones be patient

[JSSimp]

Thank you! I will be patient in the process.

[rrw5620]

I was put on Tecfidera 3 years ago when diagnose with MS. I love it so far.

[JSSimp in reply to rrw5620]

Great to hear. May your journey continue with great results. Thanks!

[photoLA]

I have been on it for 4 years and the first month was rough...I was determined to get through the stomach issues to not take shots! It gets better and you will not have them at all after a few weeks. I take an uncoated aspirin about 20 min before the pill to help with the flushing..my nero insisted on it and finally I started taking one with it. I am blessed as it is working and I tolerate it really well. I found certain food allergies got worse like my allergy to MSG, mushrooms, and pinto beans and I have a running nose about 30 min. Best Wishes and Prayers!

[JSSimp in reply to photoLA]

Thanks for all the helpful info. This is day #2 of my journey and I am believing everyday with be symptoms free...

[stlmsgroups]

I have been on Tecfidera since April 2016. I have not had much of side effects. I am used to being warm (flushing) all the time, and I do have some GI issues. I am not sure if it is the way I eat and drink soda and coffee. MY last four MRI's showed no new lesions, so it is working for me.

[JSSimp in reply to stlmsgroups]

Glad to hear and no further lesions are awesome. Thanks and will be praying for you to continue well.

[Peruzzot]

I've been on it for 2 years now. It's been great! Just don't forget to eat something before you take it. I did that one time and ended up in a fetal position from stomach pain for about 30 minutes.

[JSSimp in reply to Peruzzot]

Thank you! I have been eating and will continue to because I hear it will really alleviate symptoms. May your journey continue strong and many blessing!

[bxrmom]

I have been on Tecfidera for like 3 years or so. In the beginning I would get hot flashes so it was recommended to take a low dose aspirin before taking the Tecfidera. After about a month I stopped the low dose aspirin. I make sure to eat something before I take it. My white blood cell count did drop but not low enough for me to have to change meds. My neuro is keeping an eye on the numbers. I am JCV positive but I am a low number on that so my neuro said it was ok as well.

I hope that you do well on the meds. Keep us updated when you can, ask question if you have them!

[JSSimp in reply to bxrmom]

Good to know. Thanks so much for sharing your thoughts and taking your time to respond. May your journey continue peacefully and strong. God bless!

[Corran731]

I was on it until last November. I had to stop because I was VERY JC Virus +. I really liked it, especially because I no longer needed injections. But it also helped and I had no lesions on it. Most of the time I didn’t have problems with the side effects that some people have and there are things you can do (like taking a baby aspirin or not taking it on an empty stomach) that helps mitigate those issues. I hope it works well for you.

[JSSimp in reply to Corran731]

Ok. I am JC Virus +, but ATB are negative. My Dr still started me in Tecfidera because he said it will remain and never change. Thank you!

[Corran731 in reply to JSSimp]

Risks of PML aren’t too high on Tecfidera, especially compared to DMTs like Tysabri, and my new neurologist was possibly being overly cautious, but I wanted to switch to Ocrevus anyway

[JSSimp]

I heard the same thing. I will be praying you have great result on Ocrevus. I heard Ocrevus is a good DMTs, it’s great to have a overly cautious Dr. Thanks for sharing!

[Klclippert]

Good morning, Im 44 and was diagnosed with MS in Oct 2012 (at age 36) after having tingling and neuropathy in my feet/legs and then I had it again 6 mos later in my hands. During that time my first neurologist just recommended the typical injection meds like Avonex, Betaseron and Copaxone. He wasn't interested in trying to get me on the newly FDA-approved Tecfidera which I had heard about from a relative who sent me an article in the news about Tec coming on the market. I had no idea what to do and just prayed about it. In summer 2013, I switched neurologists to Univ of Michigan and my new doctor was very supportive and had many more patients on Tec, so she wasn't afraid to put me on it. I've been on Tec since Aug 2013 and have been totally relapse-free ever since!

Getting started: I had a little bumpy ride with the titration from 120mg to 240mg (went too fast, Im a small person and maybe it was too powerful) and side effects were bothersome first month or so (GI issues) so they took me back to 120s and went slower up to 240s and it made a big difference. I dont recall it hitting until a week on the meds, so watch your side effects the next several days and write it all down. Anyway, since then I've felt wonderful and so thankful for Tec and for the co-pay assistance program from Biogen (mfg) that keeps me on Tec and meeting my insurance deductible for the year. Without that Im not sure who could afford to be on it?? Ive just heard this week about the new generic version and Im not sure how that affects me or if I should do anything different. If Biogen keeps helping us meet my insurance deductible so that Blue Cross can cover the rest of the year, Im not sure why I would change anything.

I pray you have as good an experience on Tec as I've had. I'm a "normal person" on Tec. I know this may not last forever, but I give thanks to God for guiding me to my U of M neurologist and causing my insurance to cover it. (Blue Cross would not cover it at first, because it was a brand new med, but we wrote a letter of appeal and they changed their mind and covered it!!!) That is a God-thing for sure.

One last thought... the only side effect that I have dealt with routinely is flushing (not a hot flash per se, just itchy arms and chest / face for about 15 min). When I started a low carb and low sugar diet for weight loss last year I noticed a drastic decrease in my flushing episodes. I believe like that other person mentioned that it could be related to how the Tec interacts with gluten??? When Ive gone off my low carb /low sugar diet, my flushing comes back. So I would encourage you to consider dietary changes if you have flushing issues.

I will be praying for you as you continue on Tec and that it works well for you! Take care!

[JSSimp in reply to Klclippert]

This was so helpful information and I really appreciate it. As you stated if 120mg works without Side effects it will be great to continue the dose so if I notice major issues I will let my Neurologist know. God bless & Thanks!