Search Discussions

Main Content

  • arlawgirl
    Hey, fellow crusaders!
    My neuro told me at my last appointment that as soon as Tecfidera (aka BG-12) is approved, he'll put me on it. Well, the time has come!  With the FDA approval being finalized on Wednesday, we have started the process.  Is anyone else making the switch?  Or is anyone already on it (i.e. through the trial)?  I'm so excited to get rid of the needles- you can be that my last injection will be followed by a pajama-dance-party-in-the-living room :D
  • Ang87
    hi i am seeing my neuro tomorrow to get put on it! i was diagnosised march 2012 but didn't start treatment because i foundout i ws pregnant with my son! i've ben nursing this whole time until i had an episode which i'm still rcovering at home from. i hope this med works i'm so excited to start treatment ang get to somewhat normal. my right hand & leg were affected, walking with a walker. i'm too young & stubborn for this, not to mention my son is wanting to crawl :)
  • SHELA
    Hi,
    Did the Tecfidura Help? I hope so. I am thinking about making a switch. Thank-you.
  • nursep
    I am considering it strongly. Less risky (per the last study) than the Tysabri and many other meds currently available but I am waiting a few months to see how the general population reacts and if any concerning side effects pop up.
    Did not like the Interferon Betas as they hit me hard and I was afraid I would not have the energy to continue working if I stayed on them. I tried them for  6 months and instead of side effects lessening they got bigger and badder the longer I was on them.
    I too hope someone who was on the BG12 will respond as I would love to hear first hand what it is like before I decide if I will try another DMD or not.
    So I am in limbo waiting for something that is both safe and effective to come along that works for me.
  • SHELA
    Did u ever try it??  If yes, did it work 4 u?  Thx
  • Nicolepl17
    My neuro wasn't I pushing one drug over antoner. I've been on Copaxone since my d in 1998 ( I was 12) with small, less frequent flares up through the years. Always went for regular checkup MRI scans and bloodwork. Recently I'm having a flareup they started me on the oral taper halfway through it symptoms were coming back worse so we went in and did the trip hoping that it will be enough. It was at this time and he introduced me to fill and said although it is still in the works it's something you may want to consider and then the couple of years given that you may want children
  • Nelly77
    When I discussed switching from Tysabri with my neuro, he was against it it. He said Tecfidera only cut the average relapse rate by 49% at 2 years, whereas Tysabri cut it by 68% at 2 years..
  • NitaJ
    I am on day 8 of taking Tecfidera. I was previously on copaxone. I am so happy to no longer give myself a shot. My neuro and I had talked before and I was ready to make the switch. The side effects are manageable. I do have the flushing which is itchy. But while I was on the 1/2 dose it was getting less and less each day. Four days after my doctor sent the starter form to the drug company, the pills were delivered to my door. I had already met my deductible so they just cost my standard monthly prescription price which is about $60 a month.
  • Seaya
    How are you doing with this treatment?  I started on Tecfidera about two weeks ago.  I did experience the flushing but only for a couple of days.  I was on Copaxone for 7 years but was really tired of the shots.

    Just curious about how others are doing on this drug.

    Thank you.



  • DeeDee
    How are you now? After a few months. I just order the medication today, so I will be starting it soon. I was recently diagnosed so I have never had to use injections and of course, I am a little nervous about starting. Especially since I understand it will never make me feel better, only help to prevent from getting worse. So there will be no obvious benefit. How did the side effects work out? Thank you!
  • tawny786
    NitaJ wrote: I am on day 8 of taking Tecfidera. I was previously on copaxone. I am so happy to no longer give myself a shot. My neuro and I had talked before and I was ready to make the switch. The side effects are manageable. I do have the flushing which is itchy. But while I was on the 1/2 dose it was getting less and less each day. Four days after my doctor sent the starter form to the drug company, the pills were delivered to my door. I had already met my deductible so they just cost my standard monthly prescription price which is about $60 a month.


  • tawny786
    Hi, can you please help re: cost of the medication, where do you live, state , country, and what can I ask my doctor so I can also have the medication delivered to my home, similar cost like you. thank you.
  • tawny786
    NitaJ wrote: I am on day 8 of taking Tecfidera. I was previously on copaxone. I am so happy to no longer give myself a shot. My neuro and I had talked before and I was ready to make the switch. The side effects are manageable. I do have the flushing which is itchy. But while I was on the 1/2 dose it was getting less and less each day. Four days after my doctor sent the starter form to the drug company, the pills were delivered to my door. I had already met my deductible so they just cost my standard monthly prescription price which is about $60 a month.


  • tawny786
    "
    NitaJ wrote: I am on day 8 of taking Tecfidera. I was previously on copaxone. I am so happy to no longer give myself a shot. My neuro and I had talked before and I was ready to make the switch. The side effects are manageable. I do have the flushing which is itchy. But while I was on the 1/2 dose it was getting less and less each day. Four days after my doctor sent the starter form to the drug company, the pills were delivered to my door. I had already met my deductible so they just cost my standard monthly prescription price which is about $60 a month." Can you please tell me, which state you live in and what kind of insurance you.have, It's amazing that med comes to your home and you are paying only $60./month. Thank you
  • Big_John
    I ve been on it for two months with little stomach issue nothing bad about it yet
  • pop
    When I discussed BG12 with my Neuro (a MS Specialist) he said "Be careful what you wish for"
  • Cyndie
    Hi I had been waiting for bg12 for 1 1/2 years I could not take the abc drugs and the others were too scary to me. i was waiting for this less "risky" drug to get approved. I was beyond excited when it was approved and have been on it for two months now. I wasn't worried about flushing or a little upset tummy. I'm very frustrated but I'm stubbornly trying to tolerate the abdominal pain. It's so bad though it comes in waves and all I can do is lay down and try to breath through it. When the wave of pain hits I also get a headache, dry mouth , and dry throat. (With kids this is very inconvenient to say the least). I called my dr and my bloodwork is ok I called the specialty pharmacy nurse and she suggested taking the tecfidera with a Pepcid. And eat before taking it. I got a little relief for two days but it came back today just as painful as it was b4 :(. Any other drug I would 't put up with this pain but I had pinned a lot of hope on this one so I'm trying to deal with it in the hopes the side effects lessen but I worry why so much pain can this be good for my body.
  • CKW
    I'm wondering, Cyndie, if you were able to continue on Tecfidera.  Myself, I had been on Rebif since diagnosis with absolutely no detectable problems.  My neurologist suggested a change when he saw elevated liver enzymes.  I chose to go on the new "miracle" drug, Tecfidera.   I suffered the problem of abdominal side effects--cramping, bloating, diarrhea, nausea and vomiting.  It was awful!  I began not taking the drug so that I would not feel bad.

    My doctor now wants me to look at Aubagio and Gilenya.  Both seem that they would be problematic.  Tecfidera has scared me, and so when I read common side effects I get nervous.  I do not want to have to feel sick to treat MS!  I guess my years with Rebif spoiled me.  I did not mind the injections three times a week and as long as I remembered to take an aspirin with the injection, I had no problem, at all.

    I was wondering if you stuck it out because I read that the side effects usually went away after a while.  I do not know how long that 'while' is.  I was not strong enough to wait it out.  I hope that you are comfortable with whatever med you are using now.  Onward we go!
  • colene1
    I hope you have had success since u wrote this ! I'm new to this site and about 7 wks into Tecfidera. I put a reply on the discussion page that told about my stomach problems i had and what i did. They're almost nonexistent now !
  • Riley1
    Hello,
      My follow-up with the neurologist was today, and since I am not on any of the DMDs, the topic of Aubagio and Tecfidera (BG-12) came up.  When diagnosed 8.5 years ago I was put on Rebif by my first doctor who did not monitor my liver enzymes.  It was only upon feeling worse and worse that I sought out a new doctor who specializes in MS.  He found my liver enzymes were 10x normal after only four months of Rebif. Thank goodness I found that new doctor.  I still see him and his nurse practitioner today.  They started me on Copaxone once my bloodwork showed my liver enzymes were once again within the normal range. It took about four months.  I remained on Copaxone for 5 years.  No new lesions during that time, but the injection site reactions and skin damage were too painful and depressing.  I was not on any DMD therapy for two years.  All was well until my last MRI in October which showed four new lesions. 
        I attempted Copaxone again this past fall, because I do not wish to overlook the success I had with it. However, each shot left welts on me as big as a baseball for several days.  The doctor said to go ahead and discontinue them.  So, here we are.
        I didn't object to the Tecfidera today, and I left with a patient information folder after signing a release for "MS ActiveSource" to contact me.  The brochure does share that $10 will cover a monthly copay for those with insurance other than medicare/medicaid. 
         While I was eagerly anticipating the start of a safer oral therapy, I am now a little hesitant.  Since I arrived home, I have been reading anything I can find about Tecfidera and Fumaderm (the name of the similar medication that has been used to treat psoriasis in Germany) to try and ease my fears. After a experiencing a long list of scary side effects when taking Cipro after a four day course of Methylprednisone last fall, I just wonder if I am asking for punishment by starting this medication before it has been on the market a while.
        In the end, everyone's body is different. So, in order to know how my body will react to Tecfidera I know I have to face my fears and try it.  Not being on a DMD is a dangerous game according to my doctor and his nurse, both whom I respect a ton. Everyday they see patients who are suffering losses. I know they want to prevent these losses in the safest, most effective way.  So, I will be trading in my no DMD status and will set off on the next leg of this journey. 
        I have asked for more frequent bloodwork checks once I begin the medication, since I have had problems with other medications before.  I will be going for a CBC (complete blood count) and also a CMP (complete metabolic panel) before starting Tecfidera and again in June or about 6-8 weeks into treatment. While I am hoping I do not suffer the most popular side effects (GI issues and flushing) I have read that even those subside for many after the first month. So, I will give it a month or two unless the side effects are too troubling.
       Today the nurse said she learned that taking an aspirin before taking Tecfidera can help with the "flushing" side effect. Otherwise, taking the medication with applesauce or other food can also help address this issue. She did caution that I clear the aspirin regime with a GI doctor before starting.  I will definitely take it with food the first month and see if I can adjust and benefit from this treatment.   Besides a cure, this is what we asked for, isn't it? Hoping to report some good news and better MRIs soon.

      I really enjoyed this article today: http://www.wheelchairkamikaze.com/2013/03/does-hype-match-hope-much-touted-oral.html

           Riley

Related Content

You may find some of this other information useful