I've been on Copaxone for about a year and although I've had no relapses, I feel I have degraded a bit with my current symptoms. Rather than taking more time to see if the downward trend continues my neuro has suggested moving to Aubagio or Ocrevus. She would prefer the Aubagio as the first step because is is historically fairly safe - I think she quoted 1 incident of PML, where as Ocrevus is fairly new without a lot of history. I'm attracted to no injections, and the requirement of monthly blood work (at least in the short term) is okay, and like the disability progression claims for Aubagio but would like to know of anyone's experiences with the drug, especially slowing down or halting disability progression.
Cheers, PaulB
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pmbevac My neuro has had good luck with Aubagio. He said that even some of his progressive patients have seen improvement. But, I think it was Amore55 that was talked out of it by her neuro because, if I remember correctly, it inhibits antibiotics from working. If needed, you must be hospitalized and get activated charcoal treatments for several days, to absorb? or flush out the Aubagio.
I switched from Copaxone to Gilenya. So far, so good.
@Iona60 Thanks for the info! The literature does not mention the issue with antibiotics, I'll have to look into that, but then I haven't had the need for antibiotics for 40 years or so...
Wonder if Gilenya has the same effect on disability progression...
I have been on aubagio for ten months. After three months I got a cold went to pneumonia and put on antibiotics and worked great. Six months mri was same, no new lesions with a slight decline in old ones 😊 Same symptoms as before with very slow progress.
pmbevac If Aubagio is an immunosuppressant, like most DMTs are, you will be more likely to get an infection. My neuro believes that Gilenya is the most effective oral DMT. Each month the speciality pharmacy asks me if I have had any sore throats or infections.
I was on it for a year. Cant say anything abot progression but it made all my hair fall out and i swear i felt it seeping out of my skin like a toxin. I do know if u stop taking it it will take 2 years to leave ur system.
I was too vain to wait and see. After my hair broke the vacuum cleaner - so much got wrapped up in the rollers - i stopped taking it. Its been almost 2 years since i quit taking it and my hair is still not as nice as it used to be.
Yeah, you are correct, I wouldn't care as much about losing a bit of hair as a lady would... I'n 58 and have most of is still so losing some shouldn't be too traumatic. And it would give ammunition to all my guy friends that I've harassed over the years about losing their hair! I'm sure they would have a great time with it.
I also had been on Copaxone (which I had allergic reactions to) so I was changed to Aubagio. LOVE it! One little pill a day and no reactions. I've been super stable on it with no new lesions.
Not really. It was the allergic reaction I was having that had me stop and change to Aubagio. (Plus I Hated the shots!) I got all puffed up everywhere I gave myself a shot, even in other places I had previously given myself one. I had huge welts that were swollen, red and hot. If I would do it in my arm, for instance, my other arm, legs and stomach areas that had previously been done, would all get that way. It was awful.
Aubagio has kept me extremely stable and I still only have the same large lesion I had at the beginning. Nothing new and that's a joy! I love that it's a tiny pill I just pop in each evening. So easy. Plus no reactions! (I'd also been on Techfidera in the very beginning and my white blood count dropped like a stone on that.)
I'm with you on the injection reactions. My welts aren't that often, nor as most describe as hot & red, just kind of raised and there there. The deep hard lumps are mostly just itchy for a couple days. Nothing I can't just ignore. But it would be nice to not have them at all.
I was on Copaxone 7+ years before developing severe allergic reactions. (I previously had a life-threatening allergic reaction to interferons in Avonex so I would never be allowed to try Betaseron or Rebif. ) Aubagio was not yet available, so I switched to Tecfidera. (At the time, Gilenya already reported several PML cases and I wasn’t interested in the risk.) After 1 1/2 years, I became allergic to Tecfidera too so I started Aubagio. I’m proud to report it’s been 3 successful years… no allergic reaction, stable MRI’s and 0 relapses! I noticed some hair loss at 6 months but had full regrowth within one year. I have also successfully been on antibiotics numerous times in the past 3 you ears and never heard of nor saw in writing anywhere suggesting Aubagio suppresses the effectiveness of antibiotics.
As well, to date, Aubagio (teriflunomide) reports 0 PML cases. It’s sister drug for Rheumatoid Arthritis (leflunomide) however, reports 5 PML cases ONLY when also taking another immunosuppressant drug at the same time.
I choose not to take an MS drug when there’s any risk of death. I won’t die from MS itself so I won’t risk my life trying to control it I have RRMS. Perhaps I’d feel differently with a secondary or progressive form of MS. Except for the 4 injections which I’m allergic to, Aubagio is the safest disease modifying treatment available for MS. It is also the ONLY DMT that can be removed from your body. I highly recommend Aubagio. I hope this helps you and others better understand Aubagio.
@Icochran So glad Aubagio is working out for you. Sounds like you took a pretty rough road to get there. Didn't know all the other DMTs stay in your body. Thanks for the information - I feel better about the choice to go to Aubagio now...
Thanks all for your input. I've called my neuro and requested the switch to Aubagio. Hopefully they can get it set up before Thanksgiving - heading out the UK that weekend for a couple weeks. It would be nice to not have to take injections along.
How many folks out there take or hav taken Tysabri.. I️ was on copaxone for yrs. got an infection in an injection site so I️ went off. I️ was moving back to CA. So my Neuro didn’t want to try something new since she wasn’t going to be seeing me anymore. When I️ got settled found a new dr. He did the MRI’s apparently didn’t see anything going on. Told me I️ didn’t hav to take anything if I️ didn’t want to. So of course I️ didn’t. Stopped seeing him eventually cuz he really didn’t do anything. So it’s been 6yrs. Back here, found a new nuerologist... mri’s blood tests. 2 new plaques, he doesn’t like where they are and wants me to try Tysabri . I️ remember when it came out and then they took it off the market because peeps were dying of PML.. they put it back because I️ guess a lot of people liked it. And now they test your blood often to ck your immune system. I️ would love to hear any opinions. Thanx ponymonroe@gmail.com
Hi there, i just stumbled on your post, i just want to share that i was on tysabri for 2 years. At first, it was great, my ms was stable, meaning most days; walking, cogno, balance, mris sm lesions/no phys issues then had to stop taking as i went from jc neg- to jc pos+ and would not risk taking more tysabri( very sad about the flip- im on techfidera now but will try gilenya soon) still trying to find best drug for me! Also, i use cannabanoids (mostly edibles or vape pen) for leg/body cramps/-def helps (in state where i am able to get rx from a neurologist)! I walk everyday (mostly thousands of steps-fitbit-other days barely down the end of street) cane and/or walker some days.
I am committed to “Just keep moving forward” no matter how far or how little!! muscles need whatever exercise i can give them ( i.e; move it or lose it!!). Also, i remember to laugh as much as possible with pl i love and enjoy to be with (laughter helps me)
MS is a life sentence, You’’ve gotta make the best of it!
Thanks for the info. Just read up on the jc virus thing. Wow, seems like that can be hard to then find a good med for you. Seems some have greater history of PML. Best of luck with figuring that out, and at least you & the neuro are aware of the change!
Just a quick update on the Aubagio - after 3 months I have started losing hair, my barber noticed that today. As I really only get a hair cut ever 2 -3 months it was quite noticeable to her. Good thing is they say it will come back! But then again, if that's the worst side affect I get I'm happy.
I extract the oil out of the root but you can buy it already extracted. Mix half and half apply to hair and go to bed wash out next day. Aubagio makes hair fall out but once your body is on bored with the aubagio it will grow back. This mix helps speed up that process . I tell everyone about this mixture it's amazing for hair loss an it is healthy for your hair so it's a win win situation. ☺
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