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Aubagio

My husband switched to Aubagio a few years ago from Rebif and has been satisfied with it. I haven't met anyone else who takes it. Anyone out there?

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I used to take Aubagio but my doctor felt it's not strong enough so I am on Tysabri now, one transfusion every 4 weeks, and i go back tomorrow

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How do you feel with the Tysabri? I was just diagnosed a month ago and am waiting for authorization to get it. Lynn

#CalfeeChick

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Hello Lynn,

I have no complaints about the Tysabri. I just had my 4th infusion yesterday and it takes about an hour for completion. The fist one took 3 hours because they have to watch for any side effects, but after that 1hr each visit. I like it because I no longer have to take a pill everyday. I used to take Aubagio 14mg, my hair was falling out and diarrhea everyday. Not fun. At least you get to sit in a comfy chair and read or whatever you can during the infusion. My doctor felt I needed a med that was more aggressive than the Aubagio. On a good note I have only one active lession on my frontal lobe, the others in my brain and on my spine are now dormant. Yay! If you get an opportunity talk to your doctor about side effects, blood work every 2 months (to check for a serious infection called PML), and if you want info from the manufacturer it's Biogen.com. They will send you more information to help with your decision. I hope this helps. Let me know if you need anything and let me know what you decide please. I have pamphlets from biogen if you want them, but look them up.

Shelly

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Thank you for the great info.. I'm curious about lesions. I have 37 in brain and one on my spine.. I didn't even have symptoms until June 28, that seems like allot of lesions to me.. any ideas on where to research? Lynn

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What's weird is I had about 47 lesions on my brain and 1 on my spine, i was misdiagnosed in 12/2014 and finally got an answer 4/2015. My neurologist was an ass, my husband had to make him look further, he never discussed anything with me and just decided to put me on Aubagio without discussing any other meds with me. I love my new doctor,she spent 3 hours with me on my first appt. It's a big deal to me, she actually cares about me and how I'm doing. I'm rambling on. From what I've read there's no way to figure out how many lesions are good or bad. It's mainly where they're located that causes problems for us, physically and mentally. I'm not much help and I'm sorry for that. The only thing I can say is try AboveMs.com, MSAA.com, MSF.com (when you sign up with them, they'll send you free pamphlets), these are my main info sites. I hope this helps.

Shelly

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Had to re-read.. Yes, I am also considering getting a different neuro. Mine called me and told me I had MS.. Then told me my questions were "lay-person" questions.. Well that's what I am, his patient, but not for long. I have appt. at UCSF on the 13th in San Francisco. Then get a new neuro after their evaluation. Lynn

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Hey Lynn,

If possible see if there's a Cleveland Clinic in your area. That's where I've been going here in Las Vegas and it's worth the wait. It took me a couple of months to get in because of insurance BS. Let me know what's going on with your doctor, hopefully good tidings are coming your way. Just keep laughing and keep smiling, that's how I get through my days.

Shelly

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That was my experience. First neurologist refused to diagnose my lesion as MS, just wrote it up as white matter disease, told me not to worry about it, nothing serious. I had periods of fainting 3 years later, cardiologist sent me another neurologist who looked at same MRI, and "out of the blue" said you have MS and need to be put on Capoxone today. Then when the pharmacist co-ordinator told me about the shots I freaked out. That doctor was so cold, but asked the name of the first neurologist who misdiagnosed me. Then the next MRI showed 8 brain lesions but in an area that controlled speech and memory and balance, and also spinal stenois which affected arms and hip. Primary doc told me to get second opinion, which I did. This neuro was so arrogant, I could hardly talk to him. He said the MRI also showed lesions in cervical area more serious than the spinal stenois, so I should be on Aubagio. Go see the pharmacist co-ordinator. Another cold one. NO discussion. No hope. No compassion. I've had to do all the research myself, and find that Aubagio is not the best medicine for brain lesions. So, who knows! I am happy to find some positive comments about Aubagio!

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I have Tsyabri booklet and talked to Biogen this am.. Lynn

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I have been taking aubagio for three months. So far, blood tests for liver enzymes are okay. I do have hair loss. It is supposed to stop after six months. And I have had diarrhea a few times.

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I have been on Aubagio for 3 years and I am totally satisfied! A little diarrhea daily, but I will take that compared to other side effects.

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I have been on it for about 9 months now and have had no problems with it. Its probably not perfect but I have not been sick from it.

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Yes I,m on Aubagio and it has helped but my Dr. said it will not cure it but slow it down since i have been on it i have had one episode where my right side was numb neck was hurting could not sleep headaches in all four quads of my brain and that right eye felt like it wanted to pop out of my eye socket. I did put my C pap machine on took and gabapitin and fell asleep woke up the next day the pain was gone but the cognition was slow believe that things was where i put them but not there, talked to my daughter and she remind me of what the doctor said that sometimes it takes a while for you get your composer back....So it has been about 2 weeks for me, still working on it smile it will get better I say to myself.

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