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Who is switching to BG-12 (Tecfidera) and why or why not?

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    #31
    considering BG12

    Originally posted by BrendaV View Post
    I was initially was on avonex for 7 yrs. Tysabri 5 yrs. Built antibodies so specialist is switching me to bg12. I just got tysabri Friday so at the end of April I'm to do a round of prednisone. He said a lot of people coming off tysabri have a flare so this will hopefully nip it before I get to start bg 12. Looking forward and trusting God.
    Brenda:
    I really need some knowledgeable advice. My thoughts are that nothing is better than hearing from someone who has actually experienced the problem and it's side effects. So I do hope that I will hear from you. Let's face it, no one can understand our problems unless they have walked in our shoes for a period of time.

    I have been on almost all of the DMD's. Beta seron, copaxone, rebiff, and now on copaxone again. (seems to be the one with less side effects.) I am now having frequent exacerbations and I am afraid that the roids are going to leave me with some very serious bone loss.

    I recently talked to my Neuro and he has suggested some alternative therapy for me, one of which is Tysabri. I am scared to death of this drug, I have also tested +for JCV and really don't want to risk the chance of PML.

    I am leaning heavily on the BG12 and would love to hear about your experience with this drug. I also wonder if it helps with existing symptoms, as I have been dizzy for 17 years. Sure would be nice to get off of this merry go round.

    I hope I hear from you soon as I have to make a decision in a few days.

    Thanks,
    Cindy
    You don't stop laughing because you grow old....you grow old because you stop laughing!

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      #32
      Originally posted by betz View Post
      What does this mean:
      "I recently found out that I'm JCV+. "
      Thanks,
      Betz
      It means that she tested positive for the JC (John Campbell Virus). A positive result in Tysabri users indicates that you are at a higher risk for developing PML (progressive multifocal leukoencephalopathy).

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        #33
        Spoke with Caremark Pharmacy today and my shipment will arrive tomorrow. My Aetna monthly copay was set at $20.


        I then called MS Activesource to update my status and they enrolled me in the copay assistance program. This will reduce my monthly copay to $10 for 12 months. To remain in the program I will have to undergo annual screening. She did mention there is also a $10,000 annual limit, but that doesn't apply to me.

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          #34
          When I talked with my neuro about 2 years ago we talked about long term treatment for me. We decided to stop Tysabri and do Copaxone, me have a baby, do Copaxone until BG-12 is approved. I'm not sure if he still wants to do that but he seemed really excited about the new drug. My last MRI (post pregnancy in August '12) had a new lesion. I had been off Copaxone for almost exactly 12 months, so we're not sure if it's because I was on no DMD for 4 months or the Copaxone wasn't working. I think it's the the first reason.

          None of the drugs (beta, Tysabri, & Copaxone) have been awful for me but I haven't noticed any changes in my everyday symptoms. Of course the great thing is no new symptoms/relapses. Well, except for when I relapsed on beta a few years ago because my body was fighting it after 5 years.

          Copaxone works for me, I'm not sure if my MRIs agree but no new symptoms is nice. I'd like to try BG-12 since it's supposed to be better and I'd hate for Teva to get complacent and not work at finding something more effective, like a cure. I'll definitely be reading anyone's posts about how they're doing on BG-12!
          Lori
          Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

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            #35
            Originally posted by Marco View Post
            Spoke with Caremark Pharmacy today and my shipment will arrive tomorrow. My Aetna monthly copay was set at $20.


            I then called MS Activesource to update my status and they enrolled me in the copay assistance program. This will reduce my monthly copay to $10 for 12 months. To remain in the program I will have to undergo annual screening. She did mention there is also a $10,000 annual limit, but that doesn't apply to me.
            Marco, I also have Caremark (effective this year - was Medco). I hope Aetna tops mine at $20. That would be great.

            I had called the Caremark Specialty Pharmacy to get a ballpark figure and was told $150/30 day or $300/90 day supply. They said those amounts could change depending on my particular coverage with Aetna.

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              #36
              Tecfidera has assistance programs so usually free. Look at Protandim, a natural Nrf2 activator. May work even better than Tecfidera with fewer side effects.

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                #37
                Tecfidera - started today

                I started Tecfidera today. Caremark Specialty Pharmacy was going to charge me $85/month until I mentioned the $10/month copayment guaranteed by Biogen, so they approved that. I experienced really bad flushing after taking this morning - felt like a severe sunburn on my face and neck. Went away after about 2 hours.

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                  #38
                  Originally posted by Marco View Post
                  This is the information widely distributed by Biogen.

                  DEFINE was the first of two Phase 3 clinical trials designed to determine the efficacy and safety of BG-12 in people with RRMS. Both BG-12 BID and TID met the primary and all secondary endpoints in the study. In addition to demonstrating a significant reduction in the proportion of patients who relapsed, BG-12 significantly reduced the annualized relapse rate (ARR) and the risk of disability progression as measured by the Expanded Disability Status Scale (EDSS) at two years compared to patients on placebo.

                  •BG-12 BID reduced the risk of disability progression by 38 percent (HR 0.62; 95% CI 0.44, 0.87; p=0.0050)


                  From my personal journey:
                  Last August I had a flare that took me from a normal functioning adult with some quirks to someone permanently disabled. In a matter of days, I lost my ability to drive, talk, work, walk, my dominant side swapped, I could barely lift anything at 1 lb, etc. I have worked my butt off to regain as much capacity as possible, but I am no where near where I was before.

                  Had that FLARE never happened I'd be out having dinner with my wife somewhere - having already worked for the money, driven both of us and been able to easily open her door, move her chair, etc. Had I been on any DMT, cheetos, jumbo jacks, or even gummy bears that prevented that flare my EDSS score would be CONSIDERABLY better.

                  I believe disability progression can happen with or without flares, but a flare can greatly increase that progression. It just seems like common sense that fewer flares over years would generally indicate a lower level of disability.

                  Then again, there is no pain with ms ... I keep forgetting that.
                  Thanks for that poignant, clear explanation and sorry for your troubles. I hope things clear up slowly. But I think you're on to something with that explanation - it's going anyway and the drugs can't prevent that, but they can prevent an attack and that counts for something, though I suspect different amounts.

                  That said, what we don't know is whether if you had been on the meds, you would have simply experienced it in a slower fashion - that is x was going to happen and y is the inflammatory part which makes it seem really big until it calms down. y goes back down and x remains. What if the meds only take care of y and we're left with x regardless?

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                    #39
                    Tecfidera samples

                    Hi

                    I was wondering if anyone has heard whether Tecfidera will be sampled? The drug looks like it has good efficacy, but it also has flushing in 40% of patients and GI disturbances.

                    It may be helpful for patients to try samples before it goes through their insurance. I foresee problems where someone starts, can't tolerate the drug, then has to be switched due to adverse events. The insurance may block it for a while.

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                      #40
                      Switching

                      I'm switching. Several reasons:

                      1. Doc thinks good idea.
                      2. Avonex is working but seems to be wearing off quickly.
                      3. More continuous med dosages.
                      4. It's ORAL! Yeah!

                      Comment


                        #41
                        Originally posted by BigA View Post
                        Thanks for that poignant, clear explanation and sorry for your troubles. I hope things clear up slowly. But I think you're on to something with that explanation - it's going anyway and the drugs can't prevent that, but they can prevent an attack and that counts for something, though I suspect different amounts.

                        That said, what we don't know is whether if you had been on the meds, you would have simply experienced it in a slower fashion - that is x was going to happen and y is the inflammatory part which makes it seem really big until it calms down. y goes back down and x remains. What if the meds only take care of y and we're left with x regardless?
                        BigA,
                        I wish I had answers for myself or anyone else. The reality is no one knows what the outcome would be had we made different therapy choices. For me, I want to give myself every opportunity to remain as healthy as possible. So while I have reservations about many "MS-related" items, I do believe BG-12 is the best DMT choice I can make at this time.

                        I have officially started Tecfidera and will be posting updates as appropriate and time allows.

                        Thanks ...

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                          #42
                          Originally posted by lorib View Post
                          None of the drugs (beta, Tysabri, & Copaxone) have been awful for me but I haven't noticed any changes in my everyday symptoms. Of course the great thing is no new symptoms/relapses. Well, except for when I relapsed on beta a few years ago because my body was fighting it after 5 years.

                          !
                          No change in everyday symptoms is the ideal with these meds, so that's pretty good.

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                            #43
                            That is extremely helpful to me! I've been taking Copaxone for more than five years total with no ill effects. This will need to be very safe and with a long track record before I consider switching.

                            Originally posted by MarkLavelle View Post
                            I have no intention of running away from Copaxone until (a) Tecfidera is in use for at least 2 years and (b) it is shown not to have any suppressing effect on the immune system.

                            (a) Everyone like to talk about how it's been used for psoriasis for years, but as far as I can tell they generally haven't been taking it for years. I'd prefer to let others be the guinea pigs on this one...

                            (b) I've already had cancer & chemo & radiation (& a metastasis two years later), and my neuro & I agree that it wouldn't be a good idea to do anything that would weaken my obviously-poor-at-fighting-cancer immune system. Until my MS gets significantly worse, avoiding cancer tops DMTs.
                            Take care, Wiz
                            RRMS Restarted Copaxone 12/09

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                              #44
                              Pro tecfidera

                              Why not? I started copaxone in March, if tecfidera was approved I would have started it. Currently my symptoms are "mild" to me anyway. I have a hard time injecting myself when I feel pretty good, and really dont like it at all. Oral, little side effects, and better odds....whats not to like. My spouse is a pharmacist and works for a drug company developing oncology drugs. I am fortunate he really understands the process and trials and outcomes. He supports changing to tecfidera. I have stopped copaxone and will start tecfidera soon. I will keep you posted.

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                                #45
                                I had been waiting (along with everyone else) for BG-12 while taking Copaxone. I begun to be very non-compliant and went weeks without doing an injection. I developed some urinary problems that made me realize I could not wait even one more month so I started Gilenya. So far so good but I will have to see how my MRI looks and if I can keep my lymphocytes up. If not- Tecfidera it is!

                                Isn't it crappy that we all discuss, research, stress, test, etc for these meds that will just keep us from having flares while we are steadily progressing? It's really enough to depress me lately.
                                Newbie

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