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

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  #1  
Old 08-20-2013, 09:42 PM
Marco Marco is online now
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Why I <3 Tecfidera

For every drug there will be people that do well on it and others that do not. I failed miserably on a number of other disease modifying therapies. I had "those symptoms" that cause eye brows to raise and "that look" from a number of doctors (you know, those looks that get you referred to a psychiatrist?). My neurologist actually did a celebration dance and full 360 when she found out I was tolerating Tecfidera.

Four months into Tecfidera I still have side effects on most days. Today, I had 2+ hours of flushing and yesterday I was itching like a man on a fuzzy tree. Tecfidera was 100% responsible for both symptoms. I understand a lot of people are having a hard time with side effects. I also understand more people will take to the Internet to voice negatives than positives.

For me, it's pretty simple;
For self-administered medications, Tecfidera is statistically the best. For me, Tecfidera side effects are inconvenient, but still tolerable. The side effects experienced are many times more palatable then those on previously tried medications. Tecfidera also gives me the best chance to remain semi-ambulatory.

People don't look at me and say, "but you don't look sick" because I do. I am still "disabled" and not capable of working. I have chronic pain and fatigue. My legs would remind you of a wet noodle and you can't miss my struggle to walk even with mechanical assistance. This Saturday my friends are bringing over a power chair for me to use. I'm actually excited about it and I hope the power chair will bring me a new level of freedom.

I understand the arguments against "big pharma" therapies. I understand the thought "my MS" isn't that bad. I also understand that just one poorly placed lesion or one bad attack can have permanent & catastrophic impact.

I don't know what my future holds, but for today I will gladly take my Tecfidera and put up my very best fight against this disease.

Godspeed one and all!
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  #2  
Old 08-21-2013, 11:45 AM
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MikeY01 MikeY01 is offline
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I am liking Tec as well. The only side effect I have noticed is the flushing. I really don't care if my face is red.(my wife might disagree on that)
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  #3  
Old 08-21-2013, 02:15 PM
REG53 REG53 is offline
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Hello Marco, so glad you are able to tolerate Tec. and I hope it works well for you.

Love your positive attitude.
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  #4  
Old 08-21-2013, 06:15 PM
GooGooGirl GooGooGirl is offline
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Tec

Hi Marco,

I am glad you are doing well with Tec. I have been taking it since May 2. At first I did have some stomach pain and flushing. I almost gave up BUT........ The stomach pains and the flushing are gone. I do get hot, but nothing I can't deal with. I will certainly take this over the daily shots I was getting before. I also feel better than I have in a very long time. It might not have anything to do with the Tec, but I am very pleased.


Continued good luck to you!
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  #5  
Old 08-22-2013, 07:48 AM
MyLukas MyLukas is offline
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Giving TEC another Chance

Marco I am happy you are tolerating Tec & You are included in my prayers as everyone. I stopped Tec after 1 month because of terrible side effects but am going to restart again slowly. I wish you ALL THE BEST, GOD BLESS YOU
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  #6  
Old 08-22-2013, 08:37 PM
rgngsmom rgngsmom is offline
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mylucas

Has your Neuro discussed taking you Tec an hour after taking aspirin? And taking the Tec after eating? If he hasn't please talk to him about it before restarting the med.
The aspirin has made a big difference for me, as well as the timing of my meals.

Best of wishes~
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  #7  
Old 08-26-2013, 02:31 PM
bree2013 bree2013 is offline
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So glad for you.

Marco, happy to hear you're able to tolerate tecfidera. Hope you and others stay progression free.

Wishing ALL Msers slow / non progression.

Bree
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  #8  
Old 11-19-2013, 02:04 PM
Marco Marco is online now
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Tecfidera Update

I wanted to provide you all with a brief update on how I am doing on Tecfidera. Especially, when you see so many horror stories it's hard to keep a balanced perspective. Prior to Tecfidera, I had a very rough time on 3 other MS drugs prior to Tecfidera so I do understand how horrible it can be when your body does not respond well to a medication.

I continue to do well on Tecfidera. I am far from regimented with the drug. I generally take it 10-14 hours/apart. I am no longer concerned about taking Tecfidera with food. I have never pre-medicated(*), and my side effects continue to diminish even after 6 months on the medicine.

Current Side Effects
  • The flushing is down to maybe a few minutes/week of minimal discomfort.
  • I had GI issues before Tecfidera and they never got worse (this was a significant concern).
  • I haven't seen a rash in 2+ months.
  • My white blood count continues to improve.

I know a lot of you are still in the early phases and are having a rough time. I wanted to let you all know that your body can make positive adjustments long after the initial build-up period. Every drug has users that truly cannot tolerate it, but Tecfidera has basically become like taking a vitamin pill.

Tecfidera: No fuss, no muss, no need for a truss, no medications to succuss or concuss, no injections to cuss, no side effects to discuss, now it's time to be focussed on a better life. ENJOY!



(*)Note: Ever since I went on interferon therapy my liver enzymes have been elevated. My neurologist is concerned so we closely monitor my blood with liver function tests. This is the primary reason I started Tecfidera without pre-medicating as I wanted to give my liver the best chance of recovering.
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  #9  
Old 11-19-2013, 09:31 PM
hope32 hope32 is offline
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Marco, thanks for sharing your experiences. I love your attitude and am so glad you're doing better on Tec.
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2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins! ) Dec '09: Started Beta! Oct '13: Started Tecfidera!
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  #10  
Old 11-20-2013, 10:31 AM
MallyCT MallyCT is offline
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Marco, I always look forward to your posts as you are well informed and really provide a tremendous amount of great information. I wish you success on Tec and look forward to many more posts from you.

THANK YOU!
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  #11  
Old 01-09-2014, 04:26 PM
Marco Marco is online now
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Tecfidera is completely integrated into my life. I take my medication twice per day and have sporadic and light flushing. Today, my flushing lasted roughly 2 minutes and I last had flushing about a week ago.

After failing on 4 different MS therapies it's a major relief to find Tecfidera. It's also an added benefit that Tecfidera's statistical efficacy is significantly higher than any of the injection therapies. My focus can now shift away from my MS medication and to other aspects of my life.

My next MRIs are a few months away, but I am hopeful that the results will be promising.
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  #12  
Old 01-09-2014, 06:49 PM
DebbieB DebbieB is offline
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I always look forward to your posts, Marco. You are quite an inspiration - - so happy to hear you are doing well on Tec!
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  #13  
Old 01-10-2014, 12:23 PM
Roamerwithroots Roamerwithroots is offline
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Thank you for sharing this. I just started Tec today (one dose down), and I took, was scared reading all of the horror stories. But I kept looking, and found that there are plenty of good stories too (yours being one of them).

I took my first dose at 7am, and 3.5 hours later I got flushed. I had to chuckle, really, because I was expecting it just as it happened, because of reading the posts on here. I'm wondering if anyone has had bad nausea. My neuro gave me a script for it, but I'm not sure I've read of anyone having that as a side effect. Anyone?

Also, I took two baby aspirin this morning...I think I'll take a regular dose later.

Thanks for sharing your journey and for ALL of the helpful advice you've given to me and to others!
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  #14  
Old 01-10-2014, 07:36 PM
Cindybridgeman Cindybridgeman is offline
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Roamerwithroots...I've only been on Tec for 2 weeks but found that the baby aspirin helps. However, today 4 hours after I took my dose someone mentioned that my cheeks were red. I joked that it was my "own personal summer" since I'm a female about that age. She totally accepted it and I laughed a couple of times this afternoon because of it.

Sometimes the best thing you can do is just laugh...
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  #15  
Old 02-07-2014, 09:21 AM
Marco Marco is online now
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Hallelujah

I went to my neurologist last week for a check up. For the first time since 2010, we are not making any treatment changes. She was pleased with the neurological exam and saw progress in my physical abilities and especially upper-body strength. My blood work shows only one enzyme slightly elevated, but stable. This was the best blood test result since interferon therapy caused elevated enzymes years ago. I will take my annual MRI closer to April, but have good hope the result will be positive.

It appears that Tecfidera is kinder and gentler to my body allowing my liver to recover closer to normal levels. Previous therapies had been much harsher on my body. I am not side effect free on Tecfidera -- and it's still by FAR the best treatment I have been on. It also appears that Tecfidera is allowing me to make physical gains for the first time since 2012.

I remain confident in Tecfidera and find it harder to maintain my objectivity for other medication therapies as time goes by. Tecfidera has helped improved my quality of life and I appreciate it more today than when I started this thread.
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