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Aubagio

Has anybody here taken Aubagio? My neuro is thinking about a change to my meds, because I've had the infamous post-injection reaction to Copaxone too many times. Also because I haven't had an MS relapse for over 3 years, but I don't understand her logic there: if Copaxone has stopped my relapses, please don't take away my Copaxone!

Note to this comm's Mod: please can we have an 'Aubagio' tag?

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( 6 comments — Leave a comment )
bridgelene
Jun. 25th, 2014 02:32 pm (UTC)
I have not taken Aubagio. I went straight from Copaxone to Tecfidera.

I'm totally of the same school of thought as you -- if it's ain't broke, don't try to fix it. That being said, I wonder if perhaps your neuro is concerned that the IPIRs will cause you to not be as compliant will your treatment, thus affecting Copaxone's ability to do it's job for you?</p>

Also, a lot of people are so quick to want to get off the needle. If there's a pill avail, they want to switch. Could he just be presuming? Does he know that you'd LIKE to stay on Copaxone?

That's GREAT that you haven't had a relapse in so long! How have your MRIs been? If they've been largely stable you could also use that as backup. As a patient, you do have a right to a say in your treatment. My neuro had been biting the bit to switch me to an oral med after I'd had just ONE Copaxone IPIR, but I point blank asked him "is it a safety concern for me to continue on with this medication? I would like to continue it, AT LEAST until my MRI. And then make a decision from there." (My MRI was in like, 2 months and I had admittedly had a handful of relapses over the course of my 9 months or so that id been on it since diagnosis) He let me continue on, and when my MRI showed insane progression (which didn't surprise me. But I had the hard facts now) we made the decision for me to switch to Tec but continue on Copaxone til all the stuff was processed through my insurance blah blah blah and I actually got it. A few days later I had another IPIR and called my doc and said "I'm done. I'll just go without til I get the Tec" and he was fine with that.

Sorry. Point of the story is patients rights to having a say in treatment :-)

As a side note, did you know that Copaxone is now avail on 3 day a week dosing?

sammason
Jun. 26th, 2014 02:29 pm (UTC)
Anyway, now you mention MRI I realise that I haven't had one of those since MS diagnosis. Perhaps Fab Neuro will send me for another, which I don't particularly want (it's no fun as you know, neither the lying-in-tube part nor the seeing-own-brain-lesions part) but I'll do it if she wants it.

Since starting this thread, I've looked up the eligibility criteria for Copaxone and found that it's recommended, here in Britain, for 'people with relapsing remitting MS who have experienced at least two clinically significant relapses in the last two years.' This is where I think the rules contradict themselves. As you said, if it ain't broke don't fix it. But as mentioned upthread, I trust my neuro not to do anything daft.

Another thing she might suggest is the '3 day a week' Copaxone that you mention. I hadn't heard of that before.

Somebody (you?) wrote to this comm about starting Tecfidera a few months ago. I hope it's working well for you.
bridgelene
Jun. 27th, 2014 03:04 am (UTC)
I'm so glad you have a doctor who you feel so comfortable with. That's SO important!

And well, I'm so sorry! My stupid brain is US-centric so unfortunately I just presumed that you were in the same country as me. The 3 doses/week Copaxone was just approved in the US.....maybe 4-6 months ago? I don't know if it's in other countries at this point or when it was or will be approved anywhere else. The long-standing dose is 20mg/1ml, but the 3 doses/week is 40mg/1ml, I believe. </p>

Whatever the case, I hope you can either stick with your Copaxone or if you switch that your new medication is as effective for you as this has been!

(And yes, I'm the one who recently started Tecfidera. Thanks for the well-wishes on it! So far, my relapses/progression seem to be substantially slower/less than when I was on Copaxone. Fingers crossed that when I have my 1 year follow up MRI that THAT will agree! ;-)

lurex
Jul. 8th, 2015 05:53 pm (UTC)
late reply...
I'm way behind on keeping up with these communities....forgive me!
My neuro is changing me from Copaxone(40mg) to Tecfidera. I don't understand her logic...no exacerbations in over three years...she says that she's nervous because my MRI showed "excessive activity" - maybe she has a point but...I've had absolutely no side effects with Copaxone. I used to be on Avonex and had flu like symptoms every day! I was miserable and hence cannot take any other interferon type medication...I've read the documentation about Tecfidera, but as someone who was/is on it, can you tell me from a personal point of view - better-? worse-? side effects-?

Edited at 2015-07-08 06:04 pm (UTC)
bridgelene
Jul. 8th, 2015 07:12 pm (UTC)
Re: late reply...
I can see that though.....both sides. My neuro wants to be aggressive with MRI activity too even without relapses, lest it accumulate and come back to bite me in the ass, so to speak. For that reason I had to do a 6 month MRI (because there had ended up being a period of about 2 months between when I went off the Copaxone, and when I had my MRI before starting the Tec.


Personally? Ted has been my miracle med. I'd say better than Copaxone by a long shot for me. I had so many relapses my first year -- I know not really, but it felt like one big relapse. Since being on Tec, I haven't had a relapse. Side effects? With Copaxone I had site reactions that never really decreased, and ended up having 2 immediate post injection reactions before I gave up and went med-free for a few weeks till my MRI and then of course about another month before I got started on Tec. Here's my story with Tec (sit down and get comfortable. I'm going to go into detail so it will be long.)

I started out with the original titration of 120mg twice a day for one week, and then 240mg twice a day from then on out. Nowadays I believe they've changed the prescribing info to allow for the option of a slower titration up because that can decrease the side effects. I've heard as slow as 120mg once a day for a few weeks to start out with, etc. They say things can be done to help with the side effects -- an aspirin 30 minutes before to help decrease the risk of flushing, eating something with fat 30 min before to help with flushing AND stomach pain (a lot of people say peanut butter helps. I've also heard something in applesauce does as well), apparently Singulair (prescription) can help with...I forget what side effect. Immodium for diarrhea. I think I've heard Zantac for the stomach pain.

Really though? I didn't do any of that. I had infrequent minimal flushing that didn't and doesn't really bother me. Most of the time (it still happens occasionally) i don't even notice it unless I catch a glimpse in the mirror or my best friend points it out.

I NEVER made a point to eat before I took the medication (and still don't). I only eat breakfast sporadically, and tend to eat dinner about 6pm and take my night meds at 9:30pm. If I'm hungry I'll have something, if not then I don't make a point to just for the medications benefit. I had horrible stomach pain one time. But never again. A lot of people (from what I've read in my Tec Facebook group) who have this problem seem to kinda grow out of it eventually as their body adjust and can eventually take it without food with no problems.

Diarrhea? Yeah. About 2 weeks after I bumped up to the 240mg twice a day I got hit with diarrhea. It lasted for about 6 weeks. I never got dehydrated or had issues with my electrolytes as a consequence, but it was liquid and multiple times a day. And urgent. I did shart (accidentally shit myself when I farted) myself on more than one occasion. Yay for a big butt that holds it between my cheeks, and for pantyliners. I also learned to never trust a fart. In all fairness, I also never tried Immodium to slow it down. I wasn't working at the time, so I was able to run to the bathroom whenever I needed to, and as with the aspirin, I figured I'd just let my body adjust as it would in time rather than putting yet another medication into it. It did let up on it's own after about 6 weeks.

Finally, a few weeks after I started depression and anxiety hit my HARD and fast. And stuck around for about 2 weeks. I do NOT know for sure that it was related to Tecfidera. I've had issues with depression in the past, but hadn't with anxiety. But I had no additional stressors or any of my usual triggers (including my period), so I'm theorizing but I'm not sure if it was something else, Tec, or just coincidental timing.

All in all, now I still occasionally flush, but that's all. I haven't had any relapses and for the first time EVER I could say NO NEW LESIONS. (I started out with 25-30 and doubled after a year on Copaxone, and then a year later (I'd been med free for a few months) I still had a handful more new lesions. So to be able to say that is incredible.

Best of luck to you! <3
sammason
Jun. 26th, 2014 02:14 pm (UTC)
Thank you for commenting. As it happens, I don't think my neuro doubts my compliance. She's never doubted me at all, in fact, since reading my graphic description of my symptoms 12 years or so ago and diagnosing me before we'd even met! After examining me she confirmed her diagnosis. At my request, over the next few years, she wrote to

- the bank with whom I had an endowment policy with a Critical Illness clause. My neuro's letter got me £49K which paid off my mortgage.

- the University with whom I was studying for a PhD. My neuro's letter got me 14 months' extension on my thesis hand-in deadline which allowed me to become Dr Mason.

- the Office of Public Guardian. My neuro's letter verified my sanity which allowed me to update my Last Will and Testament.

More recently, when I had a PIR in one of the nurses' rooms at the MS clinic, my neuro (and my specialist nurse) heard my very loud swearing and came through. Between F bombs I remarked to my neuro that she needn't doubt me any more. She said that she's never doubted me and I said that it's mutual.

Edited at 2014-06-27 04:49 am (UTC)
( 6 comments — Leave a comment )

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