Aubagio

[masontimesfour]

Diagnosed June 2015, went on copaxone and recent MRI showed new lesions. Nuero suggested Aubgio. I start in couple of days and honestly I am pretty scared of the side effects. Can anyone tell me about thier experince with it?

[katepoet]

Some people have a great experience with no side effects. Others fail out on it the first day. Have you tried Protandim first? It's herbal and is stronger than Tecfidera. It works on the Nrf-2 Pathway.

[Jesmcd2 CommunityAmbassador]

Hi and welcome masontimesfour to the awsome roller coaster ride of MS. Better yet welcome to the best chat ever.

I'm so sorry about your new lesions. lm on copaxone now and was dx'ed, Mar of '15.

I don't know anything about aubagio but l know others do

Welcome to the room again. This is a great place to, make freinds, vent, and get advice. But please remember that final decision in between you and YOUR DR

[masontimesfour in reply to Jesmcd2]

Thank you, I am glad I found this.

[1RiskyRich]

They all have a side effect or two. I was diagnosed 2014. Did 2 meds. Every med available only slow it down, if they work at all. They is a 50/50 chance it will work. I went with the 91/9 chance of stopping it in its tracks. Best choice I ever made. What I did won't be approved till 2022 in USA. My MS didn't want to wait and who knows where I would be in 6 years or more with the wait time. I did HSCT. You were diagnosed more recent than I was & most RRMS (which I was & guessing you are) see reversal in symptoms. Do some homework on it & see if it's for you. I went to Mexico but there are more places. Even in the USA. But because we are so behind in medicine it is still considered in clinical trials.

[Karen-x in reply to 1RiskyRich]

Sorry for the ignorance, what is HSCT?

[1RiskyRich in reply to Karen-x]

No ignorance at all. Your neurologist will NEVER tell you about it. It stands for Hematopoietic stem cell transplantation. Look up Dr. Burt in Chicago, Illinois. He & others around the world are doing it. Won't be mainstream till 2022.

[Karen-x in reply to 1RiskyRich]

OH, ok. The creator of Active MSErs had that done. He blogs about it but I have never read it, maybe I will

[1RiskyRich in reply to Karen-x]

I also heard that the Jake Ozborne (Ozzie Ozborne's son) had it done. Takes no meds but is the advocate speaker for Teva's product. I think it's Teva or one of the big pharmaceutical companies. 3 doctors shared notes. 2 out of 3 got it approved where they are. Dr. Ruiz in Mexico and Dr. Federenko in Russia. Now there's hospitals all over but the USA. All 3 have the same exact procedure. They perfected it but Dr. Burt can't get it paid till 2022. I wish I knew about it about it back in 2014.

[Karen-x in reply to 1RiskyRich]

I read Dave Baxters blog. He had it done in 2010 and for four years he had good results and reversal of disability. He is now losing what he gained though.

[jkdavid99]

Hi

I am the biggest chicken on earth when it comes to taking meds. I waited 6 months before I started Aubagio . I have ben on for 2 months now. so far the only side effect I have had is a small rash on the palm of my hand that itches like crazy . so far it's not spreading. No nausea , blood work looks good. will get an MRI next month. I really hope it works. I can't swallow pulls either but this pill is tiny .

I hope it works for you, let us know.

[masontimesfour in reply to jkdavid99]

Thank you, im gonna start next week. I am also recovering from a hystorectomy. Its been a hard year.

[Laur3ncb1 in reply to jkdavid99]

Thanks so much! I m going to start once this exacerbation is over

[vduckery]

Been on Aubagio since February. I was scared too. No issues so far but my liver enzymes are up so we are watching it. May have to come off. I sure hope not because I don't want to. Had my one year MRI and it showed no new lesions. I've had no big relapses either. It's worth a try. All of them are scary.

[Elle61 in reply to vduckery]

Please keep us up to date with your progress on Aubagio....my Doc wants me to use it and I said not yet. I've have tried all MS drugs and after 37 yrs. nothing has slowed it down.... I am still walking, but with the assistance of my chariot ( rollator) , I really hate putting these poisons in my system if it is not going to help me in the long run.

[vduckery in reply to Elle61]

So far all is well with Aubagio for me. Besides being afraid to take it in the beginning, the only symptom I had was a headache. It lasted about a week but didn't persist all day. I haven't noticed much hair loss but I have a lot of hair so I probably wouldn't notice it anyway. My liver enzymes were slightly elevated but my doctor said they were ok so I will be able to keep taking the med. 😄 My one year MRI results were unremarkable as far as any changes. So negligent if any. I am a HUGE needle phobe so being able to pop that little blue pill along will my other meds every morning after breakfast has been great! I recommend that you at least try it. If it doesn't work, quit it and move on. Thankfully there are other solid options out there for you to to try. To me, Aubagio and Copaxone have some of the lowest risks compared to some. If I ever have to end this DMT, I may have to give my hubby the pleasure of jabbing me with a needle. (Not ready to give him that much joy 😂)

[Laur3ncb1 in reply to vduckery]

Yes... but copaxone was relatively side effect free. this is the first switch and the side effects are worrisome.. oh well worth a try after having had two exacerbations this year.

[vduckery in reply to Laur3ncb1]

I have been on Aubagio for 3 years now with no issues and no new lesions.

[Laur3ncb1 in reply to vduckery]

thanks ... encouraging!

[Iona60]

My neuro said that Aubagio is well tolerated, has stabalized even some of his primary progressive patients, and is the only one (besides Copaxone) with no reported PML cases.

[Blue51]

Hi! I was diagnosed in December 2015 and my neurologist put me on Aubagio. It took me till the middle of January to get myself together enough to actually start the medication, as I was also afraid of the side effects, and to me this was "Big Time" medicine. So far as side effects are concerned I have been doing fine, but in September I had an MRI of the thoracic spine and 2 new lesions were found. After talking to two of the pharmacists at Prime Therapeutics, one who told me to stop the Aubagio and another one who said I should discuss with my neurologist, my new neurologist suggested I see an MS specialist before changing to a new medication to see what he might have to say. I will be seeing a specialist at Rush Hospital in Chicago I had seen before, in January, so this can be considered a follow up visit since I was supposed to go back and see him anyway. Since I did not seem to have an issue with Aubagio side effects I was sorry to hear that it might now be the drug for me, but that doesn't mean that it won't be the right drug for you! Good luck and hope Aubagio works out well for you!

[RobertCalifornia]

I was on Copaxone for two and a half years. My neurologist who is an MS specialist switched me to Aubagio. I did not tolerate it well. My Dr took me off of it and I am back on Copaxone. Looking for Ocrelizumab to come out early next year. My Dr said she will put me on it after others (younger and in better shape) have tried it and no serious side effects. I also had an aortic valve replacement four years ago which eliminates any of the interferon drugs.

[Eileeng]

I was on Aubagio for a short while only because I had hair loss..... I know it might sound silly to some, however, I lost soooo much hair after having my entire thyroid removed 14 years ago (cancer, I'm 100 percent fine) I emotionally couldn't deal with it. That however was my only side effect. Good luck to you on it.

[Laur3ncb1 in reply to Eileeng]

No I would not be able to deal with hair loss. !! no no no...

[Pbargal]

masontimesfour our situations are similar. I was diagnosed 2 years ago and was put on Copaxone 40mg. My last MRI showed a new legion on my brain. My neurologist wanted to put me on Tasabri and my insurance thinks they are smarter than my doctor. They wanted all of my MRI's and what treatments I had tried before. Then they denied me. So we are having to appeal the decision. Lord knows we need our insurance but they are NOT our doctors! Sorry for the rant! Just a bit scared

[Elle61 in reply to Pbargal]

I can't stand some Insurance Companies, or Drug Rep. I feel they are in it more for the money than for us.

[Amore55]

I hate to sound ignorant, but is there a risk of PML with Aubagio? I was on Tysabri for six years and in October my risk of PML went through the roof, so am back on Copaxone. Interested in Aubagio. Thanks for the info. Kelly

[vduckery in reply to Amore55]

No risk of PML with Aubagio

[Amore55]

Vduckery, thanks for the info, very helpful! God bless. Kelly