Aubagio vs Tysabri vs Gilenya

[Alicious]

I need to choose between three meds.

Aubagio is the newest one on the market, as you are all probably aware. It's about 30% effective, and per my neuro can cause nausea, hair thinning, and is pregnancy class X. It also stays in your body for 8 months to 2 years after you stop taking it, unless you go through a regimen to clean it out. I'm not planning on having more kids, but I'm 36 and married, so even with the best birth control it is technically possible, and this scares me.

My neuro isn't excited about prescribig a brand new drug, even though they expect it to act much like the RA drug Arava which has been available since 1998. But, since the other options are Tysabri or Gilenya, it's on the table.

As for Tysabri, I'm having a blood draw on Monday to check JC status. My understanding is that you ca get a false negative?

And then there is Gilenya. This one is technically available, but my neuro has made it pretty clear he thinks it is dangerous and that the efficacy was overblown in the studies, so I'm unlikely to choose it.

All else being equal, I want something to get me through until BG-12 is available. Of course we can't know with certainty it's coming out, and it would too be a new med, but a new med with a good safety profile as opposed to a new med with a sketchy profile and two meds with known serious issues, well....

I guess I'm asking if you were me, what would you choose and why? Thank you!

(I have been on Copaxone; it wasn't effective enough. The interferons have been effective so far, but started giving me random suicidal thoughts when I'm not otherwise depressed (that I know of), so I have been taken off of them. So, I need to find a new medication, and frankly, they all scare me.)

[Redwings]

Alicious, can you cite a source for this:

Aubagio ... stays in your body for 8 months to 2 years after you stop taking it, unless you go through a regimen to clean it out.

[Alicious]

Absolutely! It's in the full prescribing information, which you can access by pdf at the top of the link to the manufacturer's page. Check out section 5.3.

https://www.aubagio.com/

My neuro said (in much better wording) that is stays in your bile, and your body is really good at recycling bile, so it stays in the body for 8 months to 2 years, depending on the patient. Rather, 8 months is when the serum levels get below a certain threshold; I'm not sure about complete clearance.

[Alicious]

From the prescribing info:

"Teriflunomide is eliminated slowly from the plasma. Without an accelerated elimination procedure, it takes on average 8 months to reach plasma concentrations less than 0.02 mg/L, although because of individual variations in drug clearance it may take as long as 2 years. An accelerated elimination procedure could be used at any time after discontinuation of AUBAGIO. "

[Redwings]

Thanks for the info. I didn't know that the prescribing information for Aubagio had been published in advance of its release.

I knew about the long life and accelerated washout procedure for Aubagio's (teriflunomide's) sister drug Arava (leflunomide). My first thought on hearing that Aubagio had been approved was that there will probably be some general neurologists who won't want to prescribe it because it might be too complicated (i.e., too much trouble) for them. I had one neurologist decline to take my case because I was going to be starting on Rituxan. She had no experience with it and no interest in gaining any experience.

There are already plenty of general neuros who have no interest in MS and those who don't appear to have enough interest in treating neuroimmune/neuroinflammatory conditions to learn how to use the applicable medications correctly. Two more meds (one for treatment and one for washout) the profession isn't used to using might just be too much for neuros who chose their specialty thinking they would be handling trauma, strokes and Alzheimer's. One more reason for folks to try to be sure they're being managed by neuros who are keeping up with the latest meds for MS.

[Alicious]

It sounds like that neurologist did you a favor by not taking you as a patient, but waiting for the "perfect" patients seems like a crappy way to practice medicine.

There are times when my neuro frustrates me, but thankfully it's not because of his level of care. I had a rush appointment, and in the less than 24 hours before I was seen he had taken a full page of notes with calculations and goodness knows what else, handwritten from his research, so we could discuss the med. Before I left the office his assistant had already called the manufacturer to see if they could get written patient info (not available until 2013). The doc also discussed how the med stays in the body, the history of the meds used to clean it out, and how bile works. I like data. This made me happy. Ish.

My understanding is that leflunomide is metabolized into teriflunomide in the body, so the chemists and researchers are reasonably confident that it will act in pretty much the same way as Arava long term. I really, really hate being the guinea pig, though, and thankfully my doc isn't thrilled about it either. We're just hitting the point of not knowing what else to do, since when I have disease activity it tends to be my eye(s) and my cervical spine, so not medicating at all makes him twitchy.

[NLay]

gileyna

@alicious- I have read ur info these drugs , I am currently trying to decide between Avonex and Gilenya, my neuro wasn't too sure about Gileya, did u take Avonex?(hope u dont mind me asking) so unsure what to do.

[newbie but goodie]

alicious- I have been mulling over these three myself. I am on Copaxone but having trouble with compliance (injection site issues) and have. I am not-so-patiently waiting for BG12 (along with everybody else it seems) and wanted to take another look at the non-injectables.

I am JCV+ so no Ty for me. I am also curious to hear any word on differences, similarities between aubagio and gilenya. YOu said aubagio has a long washout period... does that mean that one would need to wait that long before switching to another DMD? If so, that's a huge commitment.

[HarrisQ]

I'm new here but felt folks here could help me decide if I should switch my medication. I've been taking Tysabri for 5 years now with, I guess, success. Knocking on wood, I've had no flare ups since being on the drug, however, disability slowly gets worse every year. I, finally, got the JC Virus test back in October and I tested positive and I have no idea what I should do. Thinking I might just stay on the Tysabri but thinking of trying Aubagio. I'm just scared to death to switch because I just can not handle another flare up like I had back in 07.

[MyGirlsMom]

HarrisQ, even though you are JC+, isn't your risk low since you have had 5 successful years on Ty? I am JC+ and thus decided not to take it, but from what I hear, it has the best neuroprotectivity. I think you have a hard decision and I wish you well with deciding how to go forward.

Alicious, even though Copaxone didn't work that well, how do you really know that your disease progression could have been much worse without the Copaxone? It might be better to tak Copaxone again than doing nothing or taking on the "big guns", so they say. Ugh! I wish you had a better option. I am three and half years into the Copaxone with lovely dents and lumps in the thighs....I hate it, but the risk of nothing keeps me injecting....wish the decisions were simpler! Best wishes in making the right decision for YOU!!

[Alicious]

@alicious- I have read ur info these drugs , I am currently trying to decide between Avonex and Gilenya, my neuro wasn't too sure about Gileya, did u take Avonex?(hope u dont mind me asking) so unsure what to do.

I did use Avonex, but was in the small sub group who started having suicidal thoughts while one it, so I had to stop taking it. It solved that problem, although I still need meds of some kind.

If I were you I'd go with Avonex in a heartbeat. Gilenya is far more dangerous of a med, so I'd save it for a last resort if you can. That's just my $.02, though.

[Alicious]

alicious- I have been mulling over these three myself. I am on Copaxone but having trouble with compliance (injection site issues) and have. I am not-so-patiently waiting for BG12 (along with everybody else it seems) and wanted to take another look at the non-injectables.

I am JCV+ so no Ty for me. I am also curious to hear any word on differences, similarities between aubagio and gilenya. YOu said aubagio has a long washout period... does that mean that one would need to wait that long before switching to another DMD? If so, that's a huge commitment.

It stays in your bile, which takes 8 months to 2 years to fully be replaced by the body, You can have it cleared out in about 11 days, however. You can google the specifics, but it's basically 11 days of activated charcoal or some such , the same as they used to use for cholesterol before statins. It's a harmless process, per my neuro, but not a particularly fun one.

[Alicious]

Alicious, even though Copaxone didn't work that well, how do you really know that your disease progression could have been much worse without the Copaxone? It might be better to tak Copaxone again than doing nothing or taking on the "big guns", so they say. Ugh! I wish you had a better option. I am three and half years into the Copaxone with lovely dents and lumps in the thighs....I hate it, but the risk of nothing keeps me injecting....wish the decisions were simpler! Best wishes in making the right decision for YOU!!

There is ultimately no way to know; I had, out of nowhere, two flares and ON in a couple of months, so we decided to try something else. Maybe it *did* reduce the MS damage; we can't really know, but I went with my neuro's recommendation to switch after that many incidents in such a short time span. In fact, those were the only flares I've had since diagnosis. I would like to go back on Copaxone, and my neuro will let me, although he clearly doesn't like the idea. I'm scheduled for Aubagio, although it's been a month and still no meds, so who knows. Honestly, I'd take nothing for the next few months if that idea didn't make my husband so sad.

Come on, BG-12! If I have to go one something new to the market, I may as well go on the one that looks the best so far.

[batman12]

I have been taking Gilenya for 18 months now.

No relapses, no progression, no change in mri.

I wouldn't go for Aubagio - the efficacy does not appear to be that great, Rebif seems safer with the same outcome.

Lemtrada would be my ideal, hopefully this will be approved next year.

[BigA]

Very effective but doesn't help?

I always thought Lemtrada (Campath) was the most amazing, but here is an article in a news journal which says that yes, it's great in reducing relapses but that they could not show it actually had any effect on disability. It seems a common thread that reducing relapses doesn't change the course of the disease. Odd, isn't it?

http://www.medicalnewstoday.com/articles/230838.php