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

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  #16  
Old 07-02-2013, 12:54 PM
finee9 finee9 is offline
 

Join Date: Mar 2012
Posts: 18
Tec & Spasticity

Is anyone having great spasticity issues, mine has increased significantly. It's making me crazy.
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  #17  
Old 07-04-2013, 03:31 AM
Rosieva Rosieva is offline
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Join Date: Jun 2004
Location: Virginia Beach, VA
Posts: 22
Nooooo, not again

I had my 6month neuro appt today, and have been discouraged about worsening symptoms.
He gave me an information pack about - Tecfidera! . I was getting a small inkling of hope for new med.
Spasticity is a big problem for me. Went from cane to walker, wc if any distance to walk.

Visited tec web first. Optimistic. Came here - one more time, disappointed. This is why I do not get excited when normals tell me they heard about a new MS wonder drug. not sure if i should risk this stuff, now.

I had been hoping you all were enjoying a long walk around the block, while looking up former boss' number to get your job back.

I can dream, right?
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  #18  
Old 07-04-2013, 11:46 AM
MSer MSer is offline
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Join Date: Aug 2011
Posts: 55
Quote:
Originally Posted by Tapdancer View Post
Just finishing Week 7 and have noticed no difference in walking or balance. Just more fatigue. Could be the AZ heat.
Tapdancer.... I think that is it. THE HEAT. It is hot all over the USA! My uncle lives in AZ and it hit 115 degrees. That is our (MSers) worse nightmare. That alone can make your muscles MUSH and mess with your walking ability. I live in California... it will be 97 today. That is hot for us (it has been hot all week). I noticed a weakness in my muscles ... but I now know it is the heat, not Tecfidera. I actually did a lot more things yesterday than I usually do and felt fine. Today is day two in the full dose. I am praying this medication is for me.
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  #19  
Old 07-06-2013, 02:19 PM
LilyClair LilyClair is offline
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Join Date: Jul 2013
Posts: 10
Cool

Im in the beginning of my third month on Tec after a 24 month regime on Tysabri(JC+). I had one episode of flushing with first dose but nothing since. However, my walking and overall body weakness has increased substantially. To the point where I went on a 3 day course of IV Solumedrol about a month ago. Felt strong that week but have deteriorated since then. I live in a mild climate so I can't blame the weather. Were there any participants in the clinical trials that Tec didn't work on and when do you know when to throw in the towel and switch. I was so counting on Tecfidera
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  #20  
Old 07-08-2013, 07:42 PM
mhasso mhasso is offline
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Join Date: Mar 2013
Posts: 1
Smile Walking and Tecfidera

I have been on Tecfidera now for three months. I have no changes in my walking. I will say though, I live in the northeast and have had trouble with the heat and humidity. Also, when my vitamin d is low I definitely have walking issues! Have your Vit. D checked! If your MRIs are unchanged, it's working.
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  #21  
Old 07-09-2013, 07:03 PM
junius27 junius27 is offline
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Join Date: Jul 2013
Posts: 3
look out for the sun in your eyes,heat hummity.i walk better by taking a pain killer it helps my legs .
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  #22  
Old 07-10-2013, 12:44 PM
suzannejc suzannejc is offline
 

Join Date: Aug 2012
Posts: 2
I have definitely noticed a weakness in my legs since starting Tecfidera about 6 weeks ago...
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  #23  
Old 07-10-2013, 02:33 PM
SpeckledBrain's Avatar
SpeckledBrain SpeckledBrain is offline
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Join Date: Feb 2004
Location: I wish I knew!
Posts: 15
I figure I'd post an update. My stuff has definitely gotten worse. I'm now foot dropping which I haven't done since my last major attack a couple of years ago. There is a huge difference in my balance and walking ability. I'm holding out hope that it's going to level out.

And I know it has nothing to do with the weather...if that was the case I would've had another flare start in my kids Softball season which is over.

This started right as I took the medicine.
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  #24  
Old 07-10-2013, 10:08 PM
msinvincibles msinvincibles is offline
 

Join Date: Nov 2012
Posts: 12
Smile Tecfidera walking

Well I've been on for 6 weeks and although I haven't noticed any changing walking or gait issues.
What I am experiencing is that I'm getting severe calf aches in the middle of the night. Usually one or the other leg. Never at the same time. The more I pay attention to it the worse it gets. It lasts about 5 minutes and then I get out of bed and walk it off.
The other thing that's happened is when I wake up my hands and fingers are numb and when I try and make a fist, it actually hurts. This lasts for about 3 minutes after I get up.
I spoke to my Neuro today and he said that he doesn't believe that Tecfidera is the cause.
My hands may be signs of Carpal Tunnel. I'm on the computer constantly. And even though I already take Baclofen, he thought the leg cramping was increased spasiscity at night since I take Bachlofen during the day.

I'm going to see how it goes the next few weeks.

Many of you spoke of a wash out period. Well I was on Tysabri for 3.5 years. I stopped in November 2012 because I tested JCV positive . My wash out from Tysabri was 5 months until Tecfidera finally came out. No big declining changes during the 5 months. I just wanted to clean out my system from all the drugs. Didn't expect Tecfidera would have so many release delays!
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  #25  
Old 07-11-2013, 10:19 AM
Waydwnsouth1 Waydwnsouth1 is offline
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Join Date: Jan 2010
Location: Lousiana
Posts: 624
I have been on TEC going on 3 months now. At the beginning I was having trouble with walking and my gait. The spasticity was also getting worse. My walking ability was becoming worse and worse. I had a neuro appoinment and was concerned that perhaps I was just going to have to get off DMD's all together. But, we decided to continue to stay on the TEC to see what would happen. Slowly the spasticity started to ease and my walking was slowing getting better. Now I am walking without an aid and the spsticity is totally gone. I am feeling like a million dollars.

Now that with all that being said I have been having more trouble with vertigo. My vision becomes blurry and I have to lay down and relax to help things ease up. For a week it caused me to miss a substantial amount of time from work. Thankfully they are very understanding. The vertigo comes and goes. I may goe a week with now no trouble then one morning I will wake up with the room spinning. Like all MS'ers I have to be careful what I do and not over do it. Living in South Louisiana with the high humidity my outdoor activities are very limited. I find myself getting out at night to tend to my plants and do some things that I would have normally done during the day.

Tec may not be for everybody. As with MS all DMD's affect each of us differently. Only you and your neuro can decide what is best for you. My Neuro and I decided to give it some time and it has paid off. Good Luck to everyone and I certainly hope things begin to turn around for each and every one of you. God Bless!!!
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Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13

"When you are going through hell, keep on going. Never, never, never, give up."
Winston Churchill
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  #26  
Old 07-13-2013, 03:36 PM
Brandyml Brandyml is offline
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Join Date: Jan 2013
Posts: 23
On Tec for over a month

I see a lot of people mentioning issues with walking since starting the tecfidera. The main thing I noticed to that affect is almost like balance issues (I keep bumping in to things and feeling like I'm tipping over), maybe a little weakness in my legs. It waxes and wains during the day but starts about 1-2hrs after taking my dose. Also worth mentioning that I am super sensitive to medications. Any rare side effect listed on a medication, I will most likely have it.

I'm on 240mg 2x a day for RRMS dx 1/13. I have felt my scalp and the tips of my ears tingle and feel like they are on fire (even deep in my inner ear). I noticed that since I have gone up to the 240mg 2x a day that the inside of my head feels like it's burning and under a lot of pressure (worst headache). I get all day nausea that only happens when I don't eat enough before I take a dose. Some heart burn occasionally, if I take tums with my dose I'm usually ok.

I was allergic to interferons (had a horrible reaction with a full body rash and way elevated liver enzymes, ended up in the hospital for a few days), so since I don't want to go on tysabri because of the higher risk of PML I am really trying to stick with tecfidera.

I work 40hrs a week, have two children under 5yrs and I am pursuing my bachelors degree. I have been able to push through the side effects for the most part (had to go home from work 1 day due to not feeling well). I can't tell at this point if I am having a flare up or if it is just the medication side effects but it has affected my daily activities.

I also read people mentioning the testing and trials of the medication. From what I have read there were trials for 4-5years so it is a really new medication (besides just being released in march or april 2013) but sells its self as having less side effects than others offered, and being in pill form.

Don't know how much this will help anyone but thought I would share!

Brandy
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  #27  
Old 07-15-2013, 10:12 PM
snowanne snowanne is offline
 

Join Date: Jan 2012
Posts: 2
Puting 2+2 together?

I've been having increased difficulty with walking, balance, weakness and haven't connected it with the Tecfidera till I saw these posts. When my husband and I were talking about it yesterday, he mentioned that he thought it was worse since starting the Tec but I disagreed. Now, I'm going to have to reconsider. Its just that those problems have been getting worse over time but maybe the Tec is accelerating the process. I'll need to look back and retrace my steps, no pun intended.
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  #28  
Old 07-16-2013, 08:32 AM
laurasari laurasari is offline
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Join Date: Nov 2003
Location: N.J.
Posts: 259
I am having so many more spasms. My Baclifin was handling it before. But no more. I am much more dizzy and experience. Shortness of breath which I have not seen anyone. Else mention.
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  #29  
Old 07-16-2013, 08:43 AM
MSer MSer is offline
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Join Date: Aug 2011
Posts: 55
Quote:
Originally Posted by snowanne View Post
I've been having increased difficulty with walking, balance, weakness and haven't connected it with the Tecfidera till I saw these posts. When my husband and I were talking about it yesterday, he mentioned that he thought it was worse since starting the Tec but I disagreed. Now, I'm going to have to reconsider. Its just that those problems have been getting worse over time but maybe the Tec is accelerating the process. I'll need to look back and retrace my steps, no pun intended.
I am hoping, and thinking that it takes awhile for Tec to work for us... so we might see symptoms become worse for a bit. I know with Herbs it can take months before you see and feel a difference in your body. So while we might feel our symptoms become a little worse, I'm thinking that will improve down the road.... as our bodies become use to this new drug.
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  #30  
Old 07-16-2013, 11:42 AM
mgb4ms mgb4ms is offline
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Join Date: Jul 2013
Posts: 19
Going to start on Tec...

Haven't posted on this site before now but reviewing posts on Tecfidera and a bit anxious about starting it. Trying my best to have things in place to counter act side effects if/when they happen... Finally got a response from my Neuro's office that there was no need for a wash-out period, so I guess sooner than later, right?!

I try to work out 2-3 times/week but have been experiencing problems with leg weakness & imbalance. Fell twice in the past week, so I am really discouraged to hear that this drug may make things worse (B4 they get better). I have taken Copaxone since Oct 2004, was unofficially diagnosed in '87; confirmed in 2003. My husband and I feel I am starting to progress with accumulating disabilities. Do not walk long distances, use a cane if needed...which is now more often than not.

Rattling on - sorry - but doing mental battle about changing to Tec, even though I so want to stop injecting! How did the others feel about making the change?
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