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Experience needed please

jkdavid99 profile image
9 Replies

Hello

I have been on Aubagio for about 8 months and have an MRI next week. If my scan is still active then Neuro wants me on Tasabri.

Two questions

1. Someone in here has had breathing issues on Aubagio what exactly happened. The reason I am asking is I am having a weird feeling and dont know if it's Aubagio

2. For those of you on Tasabri what is your experience with it. I am JC negative. Terrified to change again. I don't do well taking meds

Any experiences appreciated

Jenny

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jkdavid99
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9 Replies
mdok profile image
mdok

What is the strange feeling like? Tell your Dr. about it when you see them next. I have been taking Aubagio for 8 months also. Luckily I haven't had any problems with it. I took Tysabri for nearly 2 years before Aubagio I am JC virus positive. I felt good on it If I had to wait longer to get an infusion because of a holiday, I could tell it was over due. I felt slower, more tired, a general feeling of missing the Tysabri. I changed to Aubagio, because my Neuro cycled her patients who were JC positive off Tysabri, if they had been on it 2 years or more.

I hope your MRI results are positive

Sggmcswain profile image
Sggmcswain in reply to mdok

Was on Tysabri for many years - being switched to Ocrivus. Never sick and felt good The Tysabri will be good for you. Try not to worry. Any problems, just tell your doctor.

Nom_De_Plume profile image
Nom_De_Plume

Hi jkdavid99 / Jenny,

I was on Tysabri 3 years and was taken off by a new neurologist because I was JC positive and they weren't comfortable with that. I had no real problems. My blood pressure did drop during the infusion but was not dangerously low (diastolic 60). It recovered. This happened more than once. The infusion days are a bit long because there is the med, then flush, then observation period before you can go home.

If I could, I'd go back on Tysabri. I heard many patients say they loved it. I hope it works out well for you!

Never been on Aubagio.

Juleigh21 profile image
Juleigh21

jkdavid99 I'vet been on Tysabri a year and a half now and it has changed my life! I'm JC negative. I had 4 relapses in 14 months and was on Copaxone and Tecfidera. I kept getting more lesions esp. in my spine. I was either on solumedrol or oral steroids. If I quit taking them, I had another relapse. When my neurologist told me Tysabri was the only drug that would slow down my progression, I was leery, but I trusted her. I've been relapse free since starting Tysabri and am off Ampyra. My gait is so much better! I'm not aware of any side effects since starting the med and I'm pretty sensitive to meds. I hope this helps! Good luck and please let us know how you're doing.😃

jkdavid99 profile image
jkdavid99

Thank you all for your responses. You have eased my fears a lot. Someone said flushing, is that from the meds going in and did it last long? I also have trouble swallowing pills so this would be ideal. Not excited but I do feel better reading your posts

Thank you

ItsChris profile image
ItsChris in reply to jkdavid99

I was on Betaseron for over two years after diagnosis and how horrible - I'm sure anyone familiar with the "old school" interferons knows what I'm saying.

I switched to Tysabri over 8 years ago. Back then it was really scary because they didn't even understand the PML association. Fortunately, they got their research and studies together quickly to figure out who is at risk.

As far as effectiness and seemingly lack of side effects, as a DMT it was life changing in a positive way. They monitor me monthly for my JC status.

I would gladly recommend it to anyone that can safely use it.

ItsChris profile image
ItsChris in reply to jkdavid99

Sorry, forgot to mention flushing.

I don't recall ever experiencing any issues during infusion. If I did, it was minor and many years ago and can't recall it. My neuro insists on a salumedrol piggy pack with the first 3 Tysabri infusions someone receives.

Juleigh21 profile image
Juleigh21 in reply to jkdavid99

I had flushing on Tecfidera but never Tysabri. In the beginning the nurses monitored my blood pressure closely b/c Tysabri can cause it to drop, but I never had this problem.

jkdavid99 profile image
jkdavid99

Wow 8 years

I was under the assumption that you should only be on it gor 2 years. Great news

thank you

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