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Aubagio

Posted: Fri Oct 19, 2012 4:41 am
by sdf75
Hi. I'm new to the forum, but have been reading posts for a while.

I began taking Aubagio 14mg yesterday. It was a LONG day. Problems: nausea, dizzyness, runny nose, aches like the flu, headache, chills, etc. It seemed the side effects were a lot like Avonex, but not as severe. This morning I feel relatively normal, but will take my second dose in about 30 minutes.

I tried injections with Avonex and Copaxone, but had huge injection site problems with both, so after a long discussion with my doctor, I agreed to try Aubagio.

Is there anyone out there also taking Aubagio? I would love some feedback from you!

Any thoughts out there on Aubagio?

Thanks!

Re: Aubagio

Posted: Fri Oct 19, 2012 6:39 pm
by NHE
Welcome to ThisIsMS. Thanks for sharing your experience with Aubagio. Regarding the side effects, have you compared your experience with those described in the Prescribing Information pamphlet? http://products.sanofi.us/aubagio/aubagio.pdf

NHE

Re: Aubagio

Posted: Sat Oct 20, 2012 9:34 am
by sdf75
Yes, and my side effects are comparable to those listed in the medication pamphlet. Just wondered if anyone else had any information to share.

Day 2: A little better. Not quite so dizzy, no nausea, still had a headache, but my nose did quit running and the aches weren't so bad.

Day 3: So far today, still have a headache, no nausea, a little dizzier tody...feel a little "out there"....and my feet are swelling and tingling a little. Not sure if that's the aubagio of not. Feel somewhat achy today, but no more than yesterday....hopefully, I'm seeing a light at the end of the tunnel!

Thanks for welcoming to ThisIsMS....
:~)

Re: Aubagio

Posted: Sun Oct 21, 2012 7:57 am
by CeAire
I started with the TOWER study in 2010. I had no clue (and still don't) whether I was receiving the placebo or one of the two study doses. I never felt nauseous or felt I had any of the other related side effects that I could blame the drug. When teriflunomide/Aubagio TOWER study went open label in February 2012 I have continued with it. I felt no differences after the transition. I just take it in the morning when I get up and forget about it for the day. When I was on Rebif I was absolutely miserable the day after I had the injections and all that went away with the teriflunomide/Aubagio.

I had an MRI last November (2011) and my doc wanted to pull me out of the trial then, which indicated to me that I might have been on the placebo when I started but I'm truly guessing. However, since the study was due to go open label in February (and everyone would be getting the same active dose then regardless) I told her I didn't want to be pulled yet and she agreed. I just had another MRI last week and I'll be seeing her in another two weeks so maybe she'll be able to tell if there have been any improvements over last year's MRI or see if we need to look at other options. (The approval on BG-12 has been delayed until sometime next year :-( ).

I asked my trial coordinator what is going to happen to the extended TOWER study now that Aubagio has been approved by the FDA and she hasn't been told exactly what's going to happen either except that they may continue it until the last person who entered the original TOWER study had completed their initial trial period which would extend it until sometime next year.

Anyway, that's been my experience with Aubagio/teriflunomide and I wish everyone the best of luck with it. It beats the injections by miles!

Have a GREAT day!

Re: Aubagio

Posted: Sun Oct 21, 2012 7:27 pm
by sdf75
Thanks CeAire for the information. Do you happen to know much if anything about the liver problems associated with aubagio?

Re: Aubagio

Posted: Mon Oct 22, 2012 10:26 am
by CeAire
I saw that could be one of the side effects but apparently so far while in the trial they have made no mention to me of any elevated levels of anything affecting the liver. I'm still going for monthly blood tests so I'm sure they are monitoring it. All these drugs can affect something adversely at some point and I'm sure a lot depends on the individual. I'd just make sure down the road to remind my neuro to order regular tests now and then to ensure the drug isn't doing more harm than good.

Have a GREAT day! :smile:

Re: Aubagio

Posted: Sun Oct 28, 2012 4:33 pm
by JJ84
Hey sdf75 - good luck with it, i hope the side effects lessen quickly for you :) my neuro called me today and told me she's put me on the list to start aubagio treatment. i'm on avonex currently, and have huge side effects and really hate self injecting so i'm excited about the possibility of trying something else.
i know it's horribly vain, but the possibility of hair thinning scares me. has anyone experienced this?

Re: Aubagio

Posted: Sun Oct 28, 2012 8:58 pm
by ab94044
I am also new here and I am very happy to see this site. Since this drug is so new for MS it is nice to know there are other people who can share their experiences.
Here is my History
I have had MS for 17 years and all but the first three I have been on Avonex
I started the Aubagio Oct 12 at 14mg I was having a pretty rough time so I am now down to 7mg and doing much better, still having a queasy stomach but not nearly as sick as the 14mg. I think it was just to much drug considering Iwas only taking half doses of Avonex when I was on it.
What time of the day do you take your abubagio? and have you found you have less side effects when taken with food?
Do you think there is any with drawl effects from stopping the Avonex?
I asked the nurse about the hair thinning and she says it is not a long lasting symptom so I hope she is right.

Re: Aubagio

Posted: Sat Nov 03, 2012 6:59 am
by savimavi
Hello all, I am also new to this forum & glad to have found it. My neurologist prescribed Aubagio a few weeks ago, but my pharmacy has not been able to get the meds from the pharmaceutical company. Has anyone else had this difficulty? I have been off of Avonex for a month, and I am worried about being without a preventative med for much longer. Thanks!

Re: Aubagio

Posted: Fri Nov 16, 2012 8:34 am
by breatheherenow
Hi, I'm new to this site. But I've been diagnosed with MS in 2009, when I was 25. And I've been on Copaxone since 2010. I've experience double vision, optic neuritis, a couple falls, and intense fatigue, but I am doing relatively well. I have been entertaining the idea of switching to some oral medication, as I continue to scar my body. I guess my body wants to match my CNS. :smile: Regardless, I balk when it comes time to commit to a pill. I really don't know what to do. Do I risk these serious, life-threatening side effects? Am I ready to possibly go bald? I mean, my mom's dad had a full head of hair until he died at 90. Do I continue scarring my body until I no longer have any possible injection site? Do I go hippie and stop ingesting/injecting these drugs into my body? I know you can't answer these questions for me. But it'd be nice to know that other people are thinking of these things. Be as well as you can be.

B

Re: Aubagio

Posted: Tue Jan 08, 2013 10:58 am
by Slumby
Hi there.
For me it is no question, and I will be starting this drug shortly.
The sfx of liver damage is very scary. I only have one liver,
and I know that it's in perfect condition...
I plan on taking the pill after dinner and hopefully I can sleep
through the other stuff, As I am -sure- it will effect me that way.
I feel like I should go out and buy a wig before any hair loss
sets in...
I hate this disease.
I imagine I will track daily stuff on my little blog dealie.
Here goes.
So lucky to have options.

Re: Aubagio

Posted: Thu Feb 28, 2013 6:01 pm
by DM
Teriflunomide has yet to be approved in Canada. I have been taken this oral drug since November 2007. Not sure but I think I was on the placebo for the first 2 year term. Experienced no side FX at all. None! I have been on the real thing since 2009 and obviously, not sure whch dose. No side FX again.

However, it is clearly evident that my hair has thinned substantially and although I still have lots, the strands are very wirey, and my hair is no longer bushy. I have lost some hair, now 57 years old, probably due to age but the thickness of my hair had always more than covered off any signs of hair loss. Now, its not the case. Evidence of my scalp are more apparent.

I was hoping to take a drug holiday this June when the trial was to be over however it has been extended until December 2014. Hope I still have hair by then.

Otherwise, no symptoms whatsoever

Re: Aubagio

Posted: Sat Mar 02, 2013 5:28 pm
by brog64
Hi, I have just started Aubagio this week after being drug free for 18 months. I was on Cladribine but Merck pulled it from the market leaving me and about 1500 others in the Cladribine cohort up the creek while we waited for the release of BG12. But BG12 is being delayed again and again so my neuro suggested starting Aubagio under the Product Familiarisation Program run by the drug company and I started 4 days ago.

I have had fairly horrid nausea with it and headaches but otherwise no other side effects yet. The nausea and headaches are about the same as when I started on Cladribine so I'm hoping it won't last for very long and will ease off as quickly as it did back then too.

I am just thankful to be on a DMD again and doing something to slow down the course of the bloody MS. Having had such a rocky course with DMDs and having had pretty much no treatment for the 10 since diagnosis because of adverse reactions and allergies it is such a relief to hve a drug that hopefully I will be able to tolerate.

My liver enzymes are being closely monitored as they are already elevated due to other medications I have been on which is hardly desirable on Aubagio but with careful monitoring I am willing to accept the risk. I am so disabled and need home help and personal care every day now and I have nearly died twice in the last year with pneumonia and other respiratory complications so I am getting quite desperate to slow this thing down.

Fingers crossed it works and all the best to the others also taking it.... Brave pioneers marking the trail for others :lol:

Cheers,

Brog

Re: Aubagio

Posted: Sat Mar 02, 2013 6:10 pm
by lyndacarol
brog64 wrote:Hi, I have just started Aubagio this week after being drug free for 18 months. I was on Cladribine but Merck pulled it from the market leaving me and about 1500 others in the Cladribine cohort up the creek while we waited for the release of BG12. But BG12 is being delayed again and again so my neuro suggested starting Aubagio under the Product Familiarisation Program run by the drug company and I started 4 days ago.

I have had fairly horrid nausea with it and headaches but otherwise no other side effects yet. The nausea and headaches are about the same as when I started on Cladribine so I'm hoping it won't last for very long and will ease off as quickly as it did back then too.

I am just thankful to be on a DMD again and doing something to slow down the course of the bloody MS. Having had such a rocky course with DMDs and having had pretty much no treatment for the 10 since diagnosis because of adverse reactions and allergies it is such a relief to hve a drug that hopefully I will be able to tolerate.

My liver enzymes are being closely monitored as they are already elevated due to other medications I have been on which is hardly desirable on Aubagio but with careful monitoring I am willing to accept the risk. I am so disabled and need home help and personal care every day now and I have nearly died twice in the last year with pneumonia and other respiratory complications so I am getting quite desperate to slow this thing down.

Fingers crossed it works and all the best to the others also taking it.... Brave pioneers marking the trail for others :lol:

Cheers,

Brog
Hi Belinda (brog64),
Undoubtedly, you know that my focus is on insulin. And so I encourage you to request a fasting blood insulin test from your GP or internist.

With elevated liver enzymes, have you discussed the possibility of Fatty Liver Disease with your GP? There is a connection between elevated insulin, inflammation, and internal fat around the organs such as the liver.

In the meantime, YOU are a brave pioneer…

Re: Aubagio

Posted: Fri Mar 15, 2013 6:27 am
by Tdc0303
Just took my first dose of Aubagio last night. How long does it take for side effects to begin? Right now, my stomach feels sick but that is all. Any advice is appreciated.

Thank you.