Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
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Hello everybody. Thanks for reading my post.
I was diagnosed with MS 7 years ago after an optic neuritis which was treated with esteroids which help me to a full recovery. I had
another flare up in March this year which affected the sensitivity of both my legs but I fully recoverd after a month. I have NEVER used any medication. I feel good, have no signs of tiredness whatsover, I swim on a daily basis..basically I feel the same than before the MS diagnosis-hence my refusal to any kind of treatment that potentially would make me feel worse due side effects. My neurologist fully supported me on this decision(until now)
Despite this, my MRI always shows new brain lesions and some degree of inflamation. Always. There are no signs of cerebral atrophy and my inmune system is still able to achieve some remyelination.
I live in Madrid, Spain. In January next year Tecfidera will be available here and my neurologist reckons that I should start taking it. Up to now there were no oral treatments here, just one that apparently has quite some side effects. He says that it has shown great results and have few side effects compared with the inyectable ones.
I am quite puzzled about all this: on one hand, I want what´s best for me-obviously-but on the other I´m scared that I will feel bad and unable to continue with my daily routine.
Anyone shares the same thoughts or is in my situation? I´m confussed as of what to do..(remain untreated vs Tec)
Many thanks for your help in advance and thanks again for reading my post.
Kind regards! Saraband
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I am in the same position with my MS and treatment course, although I took rebif for a year. My MRI is always bad with new lesions. I work every day, and I don't feel like the meds work all that well for the risks. I have met with four different neurologists, trying to gauge if I am crazy for not taking anything. I ask them what they would do if they were me, knowing what they know. No one really knows. I sympathize with you.
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I was dx officially in Sept '14 after a ON attack in July. I am a RN and I too have decided not to treat with meds. How can one tell if their relapse rate decreases with medication if they haven't determined their relapse rate without medication first? I want to see what my body does for itself. My first MRI showed 6 enhanced lesions, the second one 6 mo later showed one enhanced lesion ( a new one). Whats weird is that the new lesion is located at C5 right next to where my vertebrate is visually (MRI) indenting my spinal cord. Doc didn't find that relevant while I think it should be ruled out as a possibility. I choose not to medicate because of 2 reasons: 1. The mechanism of these drugs are still "unknown" 2. The horribly reported side effects. I personally believe that MS is strongly related to obstructed fluid flow - spinal and vascular.
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There is just no way of knowing for sure which choice (meds or no meds) is the best choice of action. It is a personal choice obviously. I do as much as I can with regard to everything other than medication and chose to take medication to give me the best chance of feeling better, knowing that medication may or may not work - I don't think anyone knows for sure and I don't think there is any way of knowing for sure.
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I was diagnosed in 2002 & continued without medication until Feb this year. I've never liked puting chemicals into my body so I resisted offers of meds til MS nurse explained that over time relapses don't fully heal & can leave some residual weakness etc. I could still walk well unaided but I'd started to notice this happening to me, so said I'd consider Interferon. Spent two years waiting for appt with neurologist - didn't chase it up as scared of injections - & I now find walking much more difficult. Part of me regrets waiting as I can't get back what I've lost, but if I'd been seen earlier I'd be on injections now. I've been given Tecfidera tablets (been on them for 2 months now). No major side effects & mental capacity back to how it used to be (huge relief).The moral of my story is that managing without medication is fine to a point, but recognise when you need to start protecting yourself against the risk of permanent damage.
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I was diagnosed in 2004 after exacerbations that I fully recovered from. No exacerbations since. I am very active and eat very well. I had always been very healthy.
Despite my reluctance to rely on medication, I went on Rebif right away. My neuro convinced me, with the help of some graphs, that even though the medications are limited in effectiveness (and their mode of "action" is unknown!), that it's beneficial if you can reduce lesion formation early in the disease, you can buy time later. I was very interested in that as I was only 40 years old. I was on Rebif for 10 years. I did not suffer from side effects, and I did not have any relapses. My MRIs were all stable (in other words, no new lesions). I finally got tired of the injections, which had become painful (due to scar tissue formation, I believe), and I switched to Tecfidera almost one year ago. I had considered other oral medications before, but didn't like what I read about side effects. Before I made the switch last year, I had an MRI (it had been a few years since my last one), and it showed two small new lesions. That suggested to me that the disease is still there (because I have done so well, I have often wondered if I really do have MS). On Tecfidera, I have no side effects and I have not had any relapses.
It's up to each of us whether to go on medication. But I don't think you should assume that you will suffer side effects. You may not. And if you don't like how you feel, you can always choose to go off the medication.
Good luck with deciding your next step.
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I had all of these same feelings as you did when I was diagnosed in March 2012. Except for a twinge in my face, I had no symptoms. Why would I go on a medication that made me feel awful? You may feel fine physically, but your MRI is telling you a different story. Your MS is getting worse. Since starting medication (Avonex first, currently on Tecfidera) I have had no new lesions and no relapses. Granted, I don't know if I wouldn't have had relapses without medication, but I do know that without medication my lesions multiplied, and with medication they subsided. You owe it to yourself to see if medication stops the progression in your brain.
My experience with Tecfidera has been pretty benign. I have flushing episodes occasionally, but mostly suffer from two annoying side effects: hair loss and sloughing on the inside of my mouth. Each person has a different story. A recent study concluded that 25% of people can't tolerate Tecfidera, so odds are in your favor. Good luck with whatever you decide.
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Is glatrimar acetate (copaxone) an option in Madrid? I took it for over 10 years with no side effects. I switched to Tecfidera for a little over a year but switched back to copaxone because tecfidera was causing lymphopenia. My total lymphocytes remain low 4 months after quitting Tecfidera, but not as low as they were.
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May I ask how low your lymphocemia counts were? I have dropped to 2.6 (absolute lymphocyte) and my doc took me off Tecfidera immediately. Now I am in a quandary as to what to do next. Any one out there who has had issues with tec withdrawal? I feel like there is an engine idling in my brain--pretty weird I know.