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

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  #1  
Old 08-02-2013, 07:52 PM
Dreams008 Dreams008 is offline
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Is Tecfidera Making Me Worse?...

I've been on Tecfidera for 4 months now. Each day my walking has deteriorated to the point where I can't even make it through the house. I still get extreme flushing, even though studies show the side effects should start to diminish after a month. I'm talking my whole face looks like I've been out in the sun all day. I also have severe spasticity, which I'm on Baclofen for. But, more than anything, I'm just so weak it's hard to get around.

Soooo, today I did not take my Tecfidera as a test. Believe it or not, I felt so much stronger tonight that I was actually walking somewhat normal and am able to type this with speed, as my hand was also really affecting me. I took the pill tonight, as I'm nervous to just not take treatment, but as soon as I took it, I began flushing and feel horrible again.

I have an appointment with my neurologist next Tuesday and I plan to discuss this with her. I know I can't continue to just take one pill a day, and I'm sure she won't agree to it, and I'm also debating if I want to continue treatment. I know it puts me at risk for not being protected, but my quality of life is really being affected and if it's the treatment that's causing it, then I'm really debating whether I should stay on.

I've done Tysabri, but being JC+, I knew I didn't want to stay on that and I had no luck with Copaxone. None of the other DMDs appeal to me. I was super excited about Tecfidera coming out, but I don't know how much more I can handle not walking. I really believe the pill is causing my MS symptoms to flare up, as I wasn't this bad before.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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  #2  
Old 08-02-2013, 08:50 PM
MyLukas MyLukas is offline
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ME TOO!

Oh my gosh, I could have written this exact post Dream008, except I was on Avonex before.( I was on Tec 4 weeks ) I have stopped Tec on Monday, and Tuesday I felt sooo much better. I really do not know what to do, do I try going back on Tec,I am very confused. (what To Do???) The Fatigue was terrible, it was more than m.s. fatigue. My Dr. said it would get better, but a month of total fatigue, stomach pain, foggy head, & decline in balance and walking is just too much, I ask myself is it worth it ? How long is too long? I hope it works out for you. GOD Bless
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  #3  
Old 08-03-2013, 01:28 PM
REG53 REG53 is online now
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Dreams008 & MyLukas-- Oh my goodness, I am so sorry you are going thru such bad sx's and I hope you start feeling better soon.

I hope your neuro has some answers for you both. Please keep us posted on how you are doing.

Wishing you the best.
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  #4  
Old 08-03-2013, 05:39 PM
MSer102 MSer102 is offline
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I had to stop DMD's because I just felt so bad on them. They were taking away my quality of life rather than making my life better. I know some people have SUCH high hopes for the medicines and then feel SO let down if they can't tolerate them. Nothing ventured, nothing gained. But for me it was more like eating at a restaurant I didn't like. It was nice to try but I don't want to go there again.
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  #5  
Old 08-06-2013, 04:24 AM
Alpharetta Alpharetta is offline
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Join Date: Aug 2012
Location: Georgia
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I was on avonex for about 8 mos while i waiting for Tec to get approved. 6 Weeks into Tech my walking and gait declined tremendously. It was time for my annual MRI so i stuck with to review the results and speak to my neuro.

No changes in MRI, still just the two lesions and scarring. My Neuro said that Tec offers no anti inflammatory abilities, avonex does.

Two weeks later i am starting back on avonex, Tec was great, just not great for my mobility. waiting for that new avonex reworked drug to get approved.
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  #6  
Old 08-06-2013, 12:53 PM
Willow63 Willow63 is offline
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Quote:
Originally Posted by Dreams008 View Post
I've been on Tecfidera for 4 months now. Each day my walking has deteriorated to the point where I can't even make it through the house. I still get extreme flushing, even though studies show the side effects should start to diminish after a month. I'm talking my whole face looks like I've been out in the sun all day. I also have severe spasticity, which I'm on Baclofen for. But, more than anything, I'm just so weak it's hard to get around.

Soooo, today I did not take my Tecfidera as a test. Believe it or not, I felt so much stronger tonight that I was actually walking somewhat normal and am able to type this with speed, as my hand was also really affecting me. I took the pill tonight, as I'm nervous to just not take treatment, but as soon as I took it, I began flushing and feel horrible again.

I have an appointment with my neurologist next Tuesday and I plan to discuss this with her. I know I can't continue to just take one pill a day, and I'm sure she won't agree to it, and I'm also debating if I want to continue treatment. I know it puts me at risk for not being protected, but my quality of life is really being affected and if it's the treatment that's causing it, then I'm really debating whether I should stay on.

I've done Tysabri, but being JC+, I knew I didn't want to stay on that and I had no luck with Copaxone. None of the other DMDs appeal to me. I was super excited about Tecfidera coming out, but I don't know how much more I can handle not walking. I really believe the pill is causing my MS symptoms to flare up, as I wasn't this bad before.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Sorry to hear you are having troubles with TEC.

Just some ideas that I have done and they worked for me. May work/help you:

stay hydrated
take 2/3 thru hearty meal
eat bland food for first month or so
Titrate to full dose
take dose 12 hrs apart

Can now exercise every day. Less fatigue (from copax) so doing more. Have to keep track to not overdo it. (Had some temporary increase in dizziness - not unusual for me - but mostly return to base now.


Good luck !
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  #7  
Old 08-07-2013, 05:09 AM
loopey loopey is online now
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Posts: 110
Have you considered Aubagio? I have been on it for 6 months and have had NO side effects. I have my blood test frequently for liver problems but so far so good.
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  #8  
Old 08-09-2013, 07:31 PM
sarahgal76 sarahgal76 is offline
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Join Date: Aug 2013
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tec making me feel worse

I just started on the full dose of tec 2X a day yesterday, after a week on the the lower dose. I feel so awful! My walking, balance and fatigue are so much worse - I have decided to stop taking it.
My MS got so much worse during pregnancy in 2010 and I never recovered after my son was born. I sought a doctor who would tested for Lyme using the IGx lab and my result was positive. I started on a course of antibiotic treatment, and I began to feel so much better (not cured, but much better) , until I began the full dose of ted yesterday.
I have a two year old and since starting ted yesterday, I don't feel like I can keep up with him. I am not taking this drug anymore.
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  #9  
Old 08-10-2013, 09:43 PM
directionless directionless is offline
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been feeling weak

I started Tecfidera at the end of July and in the past few days
I've had crazy tremors to the point of falling and needing help getting around. has anyone else had this happen?

angela
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  #10  
Old 08-14-2013, 06:29 AM
tthornton tthornton is offline
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Join Date: Jul 2013
Posts: 2
I have also felt Ms symptoms are worse. Cognitive
Problems have increased dramatically. I have been
Taking tecfidera for one month now. I only felt good
on the starter dose. I am experiencing the stomach
pain which can be severe and mild flushing. I am hoping
This gets better but right now I feel worse than ever.
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  #11  
Old 08-14-2013, 10:11 AM
pookie1954 pookie1954 is offline
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Join Date: Jul 2013
Posts: 3
Feeling worse with 240 mg 2x daily

Hi! My husband has been on Tecfidera on and off for 6 weeks or so. He did wonderfully on the starter pack. Then 5 days into the 240 mg dose he started getting really weak and ended up in the hospital from being so weak. Not able to walk at all. Was in the hospital for 3 days. His neuro took him off for a week even though he didn't think this was a side effect. After a week, we tried 240 mg once a day - he fell 3 times in 3 days. Neuor said take him off for a week again. In the meantime, I called the support line for Tecfidera and told them what was happening. They said it sounded like he was really sensitive to the Tecfidera. I asked if there was a way to get a prescription just for the 120 mg. They said sure. So Scott started the 120 mg this morning. I'm hoping it will be like it was in the beginning - more strength, more energy. Will keep you updated.
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  #12  
Old 08-15-2013, 10:09 AM
ninie44 ninie44 is offline
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Going down to 120 also

Quote:
Originally Posted by pookie1954 View Post
Hi! My husband has been on Tecfidera on and off for 6 weeks or so. He did wonderfully on the starter pack. Then 5 days into the 240 mg dose he started getting really weak and ended up in the hospital from being so weak. Not able to walk at all. Was in the hospital for 3 days. His neuro took him off for a week even though he didn't think this was a side effect. After a week, we tried 240 mg once a day - he fell 3 times in 3 days. Neuor said take him off for a week again. In the meantime, I called the support line for Tecfidera and told them what was happening. They said it sounded like he was really sensitive to the Tecfidera. I asked if there was a way to get a prescription just for the 120 mg. They said sure. So Scott started the 120 mg this morning. I'm hoping it will be like it was in the beginning - more strength, more energy. Will keep you updated.

I have been experiencing the same thing as your husband. I was okay on the 120, just sleepy but it got better. Then as the weeks went on at 240 mg I kept getting weaker and weaker. My body hurts and I feel like I am relapsing. My neuro said its not a side affect and wanted me to see the primary care dr to make sure nothing was going on. I know its the TEC. I accidentally missed a morning pill and felt much better. I also talked to the pharmacist at my insurance co and she also said these are not reported side affects. Yet, I feel the same as many people on here are commenting about. My neuro said lets go back to the 120 and see how things go. Im a bit nervous still, hoping things will greatly improve.

I feel like all of us that are having the fatigue, muscle weakness, sleepiness, etc should start calling and reporting them to Biogen.
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  #13  
Old 08-16-2013, 10:06 AM
pookie1954 pookie1954 is offline
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hoping 120 mg 2x a day would be better

I'm sorry you're going thru this also. This was the pill we were all waiting for!

My husband started the 120 mg 2x daily Aug 14th - tood 2 pills and and then 1 yesterday morning. His PT was there and he called me and said my husband was very weak, could barely walk and he didn't want to leave him. I left work, went home and he was very slow. He did walk but much slower than a couple of days before. I called his neuro, who is out of town but I did talk to his nurse. She said I think you should stop it. So I did. We'll see what happens.

Hope you do well!

Pookie
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  #14  
Old 12-10-2013, 11:16 AM
mike1963 mike1963 is offline
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Join Date: Jun 2008
Location: New Jersey
Posts: 25
Issues here too

In my third week of Tec. My left leg has always been the weaker one. Right has been fine...up to about a week ago. Now my right is, I'd say, about 75% bad. Worse than left one. Can't lift it. Trouble walking & balance is not safe. Tremendous full body fatigue. Never been this bad. Slept all night (with sleepin pill) almost 8 hours last night. Awoke & felt like I didn't sleep a wink. Also finished 5 days of IVSM a week ago. Doc thought boost might help but as of now, no. I'm thinking the Tec is not agreeing with me. Want to NOT take it today but I don't know. Made appt to see him tomorrow. Hope he's got an option up his sleeve.
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  #15  
Old 12-17-2013, 11:26 AM
JBWInColorado JBWInColorado is offline
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I was taking Tec at the lowest dosage - one 120mg pill a day while I worked up to a higher dose. I wasn't too bothered by s/e for the first 2 weeks but week 3, I was non-stop nauseous for 3 days, then BAM! fatigue/weakness hit me like a ton of bricks. I'm newly diagnosed (3 months ago) and really haven't had many symptoms - I never had this fatigue before! I felt like a ragdoll, it was new and scary and upsetting.

My doc told me to stop the tec and I took steroids for a few days. I haven't restarted the tec and I now feel as good as I did pre-diagnosis. No symptoms, no fatigue, nothing. I never had the common symptoms - tingling, numbness, vertigo, etc. so when that fatigue hit me - I just feel like it was the medicine. I also didn't like the fact that I had to take other drugs to combat the potential side effects of this drug. (prilosec, aspirin, etc).

I'm considering Copaxone now. I'd rather deal with injection issues than general feeling like crap. Tec scares me... it's so new, and so strong, and I've never been on anything like it.
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