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Tecfidera For discussions regarding Tecfidera (also known as BG-12)

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  #1  
Old 06-01-2013, 11:58 AM
Jrtkahle Jrtkahle is offline
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R.I.P Tecfidera

After taking Tecfidera for 7 weeks, my neuro is putting me back on Rebif. I could have tried to put up with the side effects (bad flushing plus nausea that lasts for hours), but last week I had a flareup for the first time in 8 years being on Rebif! So it is obviously not doing its job, now I have to decide if I want to treat the relapse with IV steroids, which I hate. Anyway, good luck to everyone else trying Tecfidera, I hope it works out, I would have loved to take a pill after 14 years of injections.
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  #2  
Old 06-01-2013, 03:34 PM
GooGooGirl GooGooGirl is offline
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sorry

I'm sorry. I know it is a disappointment.
I am wondering if I am going to be on it much longer too. I am having so many side effects (gastro)

I won't go back to the needle again though. I decided before I started Tec, if it didn't work there was no going back for me.

I'm so over the shots.....
I'm wishing good things for you..
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  #3  
Old 06-02-2013, 09:00 AM
Jrtkahle Jrtkahle is offline
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Thanks!

Thanks, GooGooGirl - I was actually doing okay with the shots - all told, been injecting for 14 years, first on Avonex and then Rebif. I will restart my Rebif now, since it worked for me in stopping flare ups. My neuro also wants me to think about Gilenya, but I have been reading the posts about people gaining 10 to 15 pounds on it, which for me would be horrible - I lost 95 pounds and have kept the weight off for 9 years now and the last thing I want is to be heavy again! Good luck with Tecfidera, you should stick with it for a few more months to see if the side effects lessen.
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  #4  
Old 06-02-2013, 09:30 AM
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ggnutsc ggnutsc is offline
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Sorry to hear that it didn't work for you. I was on Rebif, and if it had worked for me, I'd probably still be on it. I had a flareup about 6 months after starting it. My Doc was thinking Tysabri, but I'm JC+ so the timing for Tecfidera was great!! I just hope it's the thing for me. On my second day now...

I hope Rebif works as well for you now as it did the first time... 8 years... Wow!! The shots were a pain in the arse, but nothing I couldn't handle... So like I said, I would probably still be on it, had it worked for me...

Good luck!!
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Old 06-02-2013, 10:54 AM
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Kimba22 Kimba22 is online now
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Jrtkahle,

Sorry the drugs not working out for you. I doubt I could handle the flushing, besides the GI effects. After reading all these threads, I understand what my MS Specialist was talking about when the drug was still in the trial phase. I hate the hot flashes I get after getting drug induced menopause. I hope Rebif continues to work well for you.

I had to stop taking Rebif after being on it for a few years because I started getting dangerously high fevers. I was on Gilenya for awhile and I LOST weight on it. I had to go off it because my white blood cell count went too low. I was set up for some really bad infections.

Best wishes as you go back to Rebif,
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  #6  
Old 06-02-2013, 02:49 PM
GooGooGirl GooGooGirl is offline
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Meds

Just wondering Kimba,

Are you on a med now? I hope you are doing well.
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  #7  
Old 06-02-2013, 03:31 PM
Katje Katje is offline
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My neuro wanted me on this drug, no way! I was on Copaxone for many years and didnt mind the needle like many do, but I developed an allergy so I had to stop.

I think this med sounds horrible.
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  #8  
Old 06-02-2013, 07:44 PM
Shawshank Shawshank is offline
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I was on Avonex for 16 years and was doing really well - but I was soooo tired of the shot. I absolutely dreaded it. When my neuro told me about BG-12, I counted down the years/months/days for its release and put in my paperwork immediately after the FDA announcement.

But after 3 weeks on Tecfidera, I had to quit. The stomach issues and fatigue were just too much for me. I was barely getting by for the better part of a month and finally, I said enough.

Now, one week back into Avonex, I feel very fortunate that I had something to fall back on. As desperate as I was to be done with shots, I had a drug that worked and that I could tolerate. I know now how lucky I am.

I feel truly horrible for the people who have to deal with miserable side effects or go off DMDs altogether - everyone out there who is suffering through any one of the MS drugs because they don't have another good choice.

This whole experience has truly been a life lesson for me. Shots aren't so bad, and if you can tolerate a drug that works, consider yourself very, very, very lucky.

Good luck to everyone out there. I hope everyone finds something that works for them.

Karen
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  #9  
Old 06-02-2013, 07:52 PM
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Kimba22 Kimba22 is online now
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GooGooGirl,

I'm on Tysabri. The needle stick for the IV once a month is easy to deal with. I've been having a rough time with my disease progression, which is why I finally went for it. I'm still trying to recover from two really bad relapses last year. Didn't help that I fell and broke a bone as well.

So far, I'm JC-, so not too worried about PML ... yet. I'm sure I'll get more nervous as time goes on. I've been on it now for 7 months.

I can't take interferons anymore. I've been rechallenged with them twice and now spike fevers of 105 - 106 F. I doubt my doctors will ever risk putting me on Gilenya again and Copaxone just didn't work for me. I'm not considered a candidate for Aubagio, so the only other drug would be Tecfidera. I just don't think I could handle the side effects.

So, looks like it has to be Ty or nothing for me. Considering how bad I started doing on nothing, I'll stay with Tysabri.

I hope the GI side effects from Tecfidera lessen for you, soon. That can't be fun.
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  #10  
Old 06-02-2013, 08:28 PM
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durgastiger durgastiger is offline
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Thumbs up @Jrtkahle

I was on copaxone then rebif and developed an interferon anti-body. Have you ever been tested for it?

I never felt better being off of rebif. No more extra tightness, night sweats and depression.

I ask alot of people who can't tolerate Tecfdera if they juice, on a good diet and if their are over or under weight.

If you can answer these honestly then make you are or are not a good candidate for Tecfidera.

Probiotics is a good start as is kefir and protandim.
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  #11  
Old 06-03-2013, 04:04 PM
Jrtkahle Jrtkahle is offline
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You are so right!

Karen (Shawshank) - I completely agree! I was doing very well on first Avonex and then Rebif, but jumped at the chance to move to an oral med, and what I got in return is my first relapse in 8 years. I now realize the shots are really a small price to pay for finding an option that works. I really feel for all the folks out there who have to switch because it isn't doing the job - when you do find one, stick with it! Meanwhile I started today on my 5 days of Solumedrol, I hope it puts this flareup to bed for good!

Jackie
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  #12  
Old 06-06-2013, 06:54 AM
zoysia zoysia is offline
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I think I found a thread to post a reply to AND ease my mind about stopping Tecfidera today, after only 6 weeks. Thank you!

to Kimba22: "...understand what my MS Specialist was talking about when the drug was still in the trial phase. I hate the hot flashes I get after getting drug induced menopause. I hope...."
Thank YOU!!! "trial phase" says it all! I was beginning to think it was me, my imagination, my memory playing tricks on me! But no, and not just me. I went through menopause about 6 years ago (age-triggered even) and those hot flashes were NOTHING compared to these I have now from Tecfidera. Where has anyone ever said that menopause would be considered a Cake Walk!?!?!? In short, I know what you are talking about or feeling and nothing is worth this constant state of HOT!

Now, I do understand that some people are doing quite well in their drug regimen. For those I wish long functional lives! The drugs DO help many with MS troubles, but for me, sadly, my body just refuses to tolerate stuff put into it. It's bad enough without any "additives" but when those additives do more harm in other areas (decreased quality of life), I find I have to just stop using additives and go back to square one.
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  #13  
Old 06-12-2013, 07:37 AM
zoysia zoysia is offline
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Quote:
Originally Posted by zoysia View Post
I think I found a thread to post a reply to AND ease my mind about stopping Tecfidera today, after only 6 weeks. Thank you!...

...I do understand that some people are doing quite well in their drug regimen. For those I wish long functional lives! The drugs DO help many with MS troubles, but for me, sadly, my body just refuses to tolerate stuff put into it. It's bad enough without any "additives" but when those additives do more harm in other areas (decreased quality of life), I find I have to just stop using 'additives' and go back to square one.
6/12/2013 update: Been off Tec for 5 days now and feel so much better all over that it truly is amazing! Neuro said, last week, that I could stop taking Tec anytime I wanted but we agreed on giving it about a week's trial at only 1/day. Well, that one capsule per day lasted oh, about two days--I had a very bad night, awoke at 4am completely soaked with my own sweat and said, "No more!" I have had no 'withdrawal' symptoms but for the one, a sweaty hot flash during the day after stopping. Next!....
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  #14  
Old 06-12-2013, 01:16 PM
JerryD JerryD is online now
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So, if I read this correctly, you (durgastiger) feel that a persons inability to tolerate Tec may have something to do with their physical condition. Overweight, obese and/ or gastro/ bowel impaction. I wonder...
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  #15  
Old 06-12-2013, 05:04 PM
rdmc rdmc is offline
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Quote:
Originally Posted by JerryD View Post
So, if I read this correctly, you (durgastiger) feel that a persons inability to tolerate Tec may have something to do with their physical condition. Overweight, obese and/ or gastro/ bowel impaction. I wonder...
If that was true...wouldn't that have been seen in the trials. Sure seems to me like a "blame the patient" if he/she can't tolerate a med. Nothing wrong with juicing, and a healthy lifestyle, just don't think you can presume because someone fails on a drug things would be different if they did x, y , or z.
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