Have you switched to Tecfidera? Are you glad you did?

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.

Have you switched to Tecfidera? Are you glad you did?

Postby Jimpsull » Tue Jul 09, 2013 11:47 pm

I hear a lot of talk about BG-12 side effects but very little about people's perception of its effectiveness. I have been on Copaxone 10+ years with only minor relapses (if at all) and no side effects. However, I have seen some significant decline in balance and stamina over the past 18 months. My Neurologist has suggested switching to BG-12. Thoughts?
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Ash3 » Thu Jul 11, 2013 6:06 pm

My philosophy is change is good. So, if your comfortable with it try it. I was on Avonex for 6 years and started Tecfidera on May15, go for 8 week bloodwork next week and we shall see how my white blood count is. But now that I am settling down with all the side effects I hope I can stay on it plus it makes me be more aware of the food I eat. Pills are a lot easier for me. Good Luck and let me know what you decide.Ash3
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby travis842 » Thu Jul 11, 2013 7:53 pm

Yes I am. My Neuro got me it free for a year from Biogen, since I am poor now due to losing job after job since diagnosed in 2007. Before that I worked on average 6+ years for companies. If I have an attack and have to go to the Hospital, employers don't like the fact that I'm gone for a week or two do to steroid injections. Numbness from the waist down etc... makes it mandatory to go.
Anyways, chomping down pain medication for flu-like symptoms for injections is really tough to handle and not good for my liver. Sticking my self sucks. Avonex then every two days with,"easier" Betaseron was done for years.
Sure, diarrhea & flushing is annoying but my Neuro said take Pepto. I eat a meal, take 30ml of extra strength Eguate brand pepto(1/2 the price) from Walmart with a beano chaser. In that exact order. My body is now getting used to 240 mg plus the stomach cramps and the sore deltoids go away. I do keep pepto and beano with me at all times! FYI Im a month into it now.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Jimpsull » Thu Jul 11, 2013 10:19 pm

If your employer has more than 50 employees you should be able to take FMLA and you should be covered by ADA. That's in theory of course. I haven't had to tell my employer.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby travis842 » Wed Jul 24, 2013 2:16 pm

JimP..... I recommend it. I am. I am 1 month and 1 week into it now and my body is kinda use to it now plus I now know MY best way to stop the bloating and gas. For the first few weeks it took some getting use to.But now no side effects. Better than other meds since 2007. For me at least.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby kromer » Thu Aug 01, 2013 2:11 am

I am very happy with the switch. I was on Avonex for 8 months and never got over the flulike side effects. Also didn't realize until after stopping Avonex that it was the reason for my extreme fatigue. I feel much better and do not have any side effects. I have not had to change my eating habits like many have had to. Only time will tell if it is effective. Hoping for good MRI results!
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby prauly » Wed Aug 07, 2013 3:59 am

I have always had mixed emotions/thoughts about taking any medication. I switched from Copaxone to Tecfidera a couple of weeks ago, and have had minimal specific side effects. I have, however, had extreme fatigue and the constant feeling as if I am coming down with something. If anything, my symptoms seem worse (more numbness in my hands, I lost the feeling in my right arm for a period of time, and I could just fall asleep at any moment). I definitely felt better on Copaxone, but everyone keeps telling me to give things a couple of months. I'm seriously considering stopping all meds and JUST sticking with the Paleo diet by following the Wahls Protocol for MS, including the supplements. I'm always concerned about the long term effects of any medication, including this one.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Tucute1958 » Wed Aug 07, 2013 11:54 am

Jimpsull,
Hi...I am done with month 3 of Tecfidera and was on Avonex for almost 15 years. I did very well on Avonex MS wise, MRI's were great. The side effects from the Tecfidera are still there. The flushing is quite heavy, you can take 325 mg. of coated aspirin, but take Zantac 150 mg before each dose for the abdominal pain it caused, so don't want to add aspirin being a stomach irritant. The abdominal pain when I started the 240 mg. was so intense that I had to stop it for a week until I got some good advice from my MS Specialist back East. I am not sure, but I do feel more of my MS symptoms on the drug. There are also other side effects that Biogen doesn't list because they really don't know. It wasn't tested enough and if you call them, they seem clueless. It was approved too fast, but I know I don't want to do the intramuscular injection anymore, so if I leave Tecfidera, I also don't want to be on nothing. As I type this, the morning flush from Dose 1 is upon me now....itching, burning, redness, looks as though I fell asleep in a tanning bed. I take with food but still get the flush. I will have MRI's done soon, to see it's effectiveness.
Good Luck with your decision!
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Mamareds » Thu Aug 08, 2013 2:41 pm

Today is my first day and so far I HATE it. I know it is going to take some time and my doc asked me to give it a month. 7 yrs on Copaxone, 1.5 yrs on Gilenya (which I loved, but doc had concerns about long term effects). The flushing has been horrible and stomach irritation is bad. All this after one pill this morning and I am afraid to take the 2nd one this evening. I hope it gets better.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby findingree » Thu Aug 15, 2013 6:20 pm

I just stopped taking techfidera. I only took it for 16 days. The side effects with the starter dose were bearable, but turned brutal about day 3 of the full dose. "Nausea" so severe you would have to create a new term to convey just how bad. The distressing thing to me now is the residual effects I am still having and my last dose was 9 days ago. Intense itching and outbreaks of hives that started approx 3 days after stopping trtmnt.I just had to take 2 benadryl because of itching&
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby NHE » Thu Aug 15, 2013 11:18 pm

findingree wrote:I just stopped taking techfidera. I only took it for 16 days. The side effects with the starter dose were bearable, but turned brutal about day 3 of the full dose. "Nausea" so severe you would have to create a new term to convey just how bad. The distressing thing to me now is the residual effects I am still having and my last dose was 9 days ago. Intense itching and outbreaks of hives that started approx 3 days after stopping trtmnt.I just had to take 2 benadryl because of itching&


I'm sorry to read that Tecfidera put you through such an ordeal. I encourage you to file an adverse event report with the FDA. Since Tecfidera is a new drug, reporting the adverse events will help people learn about its side effects which aren't listed in Tecfidera's doctor's prescribing information.

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Aligypsi70 » Fri Aug 16, 2013 10:45 am

Uugh! I am so kickin myself about flipping from Copaxone to Tecfidera!! Can my fear of takin one more blue pill be felt? I look back at my journal...first day of Tecfidera 7/12/13, flushing(sunburnt cheeks)am
Palm/fingers itching, frequent urination. Today, 08/16/13: tremors are violently sporadic, itching is intense, I hold ice packs for 20 min to relieve itchiness. I eat paleo diet. I have a chill episode after pm pill which turns into multiple tremors, which cannabis settles the tremors down. I called Tecfidera support...not knowledgeable. I felt like I just told my side effects and symptoms to someone who worked at telephone company. My neurologist will be calling me...to decide if/when/how to change back to Copaxone :~€
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby CureOrBust » Fri Aug 16, 2013 4:58 pm

Aligypsi70 wrote:... flushing(sunburnt cheeks)am Palm/fingers itching...itching is intense, I hold ice packs for 20 min to relieve itchiness...I have a chill episode after pm pil...
I am NOT on Tecfidera, but have done many niacin flushes, and these two symptoms sound very similar to what happens during a niacin flush. Although it sounds counter intuitive, I have found that if I wear warm clothing (eg long a sleeve tight fitting T-shirt and a warm jacket and even two pairs of trousers...) the skin burning and itchiness is greatly reduced. I have also found that if I don't, I seem to loose a lot of body heat during the flush, and when its over I get a very strong chill; its winter hear and it happens even with the heater on. It may be worth a try, I hope it helps. Also, maybe ask your doctor (because I am definitely not one) if an antihistamine would help with the itch.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby CaliReader » Fri Aug 16, 2013 5:41 pm

Aligypsi,

I wonder about whether you have an allergy to the underlying compound behind the drug. I worried about that for me before I started Gilenya, since it is derived from a fungus used in chinese medicine. The chemical behind BG 12 Tecfidera could be one that some of us are allergic to. Just a thought.

The nerve sympoms, tremors sound really scary. I hope you feel better soon.
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Re: Have you switched to Tecfidera? Are you glad you did?

Postby Jimpsull » Sat Aug 17, 2013 12:58 am

Thank you all for the advice. I did take the plunge. So far, so good. About 10 days in to it.
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