Aubagio

Aubagio is an oral treatment approved for MS.

Re: Aubagio

Postby kaalo » Wed Jul 03, 2013 8:44 am

Today is day 8. I am exhausted. Several days I have gone home from work and went straight to bed and slept all night. So sleepy all the time and my legs are rubbery. Bad headaches every night. I hope this goes away I am a danger to myself in this state. Some diarrhea but not bad, no nausea. I haven't been able to get in touch with one-to-one. I call and am put on hold forever. No point in leaving a message to call me back, I'm at work when they are available and I can't have them calling when someone is in my office. Diagnosed over ten years ago; I have not disclosed this issue to anyone for personal reasons and because it would put my job at risk. My support network is nil, and I live alone. My future will probably be under a bridge somewhere.
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Re: Aubagio

Postby kaalo » Wed Jul 03, 2013 10:11 am

Tdc0303 wrote:On 14mg Aubagio for one week now. I am feeling completely exhausted and run down. Anyone else like this?


Are you still having problems with this? I just started 8 days ago and I'm hoping it passes? I am so dopey and tired I just don't know if I can keep this up.
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Re: Aubagio

Postby standingtall » Thu Jul 04, 2013 7:17 am

kaalo wrote:
Tdc0303 wrote:On 14mg Aubagio for one week now. I am feeling completely exhausted and run down. Anyone else like this?


Are you still having problems with this? I just started 8 days ago and I'm hoping it passes? I am so dopey and tired I just don't know if I can keep this up.


I am a little over four months into the Aubagio Regimen. I did not have any of the symptoms you describe, but it does not surprise me that you do have these symptoms. Everyone has different reactions to any medicine. What I do know is that some Aubagio users have reported initial symptoms like yours that have stopped after a few weeks. Hopefully yours will subside over the next few days. You may try moving your daily dose to a different time of the day, possibly at bedtime where you can sleep through the worst of the symptoms. Or some other time, but move it around to see what works best for you.
What you eat when you take the med can make your symptoms worse. Always, always, always eat at the same time as taking this med. Not eating when I take Aubagio would kill my stomach. For me, my hardiest of meals is often breakfast. I normally consume three or four courses at breakfast time. My breakfast meals often consist of one to two servings of fruit, one serving of oatmeal, one serving of fruit/vegetable puree, and a couple of times per week I will have one small portion of lean meat at breakfast. I also am a very early riser, up 2 to 3 hours before work and prepare my breakfast and take my Aubagio at that time. This regimen has worked well for me.
As for efficacy of the Aubagio, it is too early for me to say. In the beginning I was not feelling too well but did not attribute my issues at the time to the aubagio. Over the last month or so, I have been feeling better but have also made a few adjustments to my overall regimen of diet, supplementation and exercise.
Out of curiousity, is this your first DMD or did you switch over from something else? Hope you feel better. :smile:
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Re: Aubagio

Postby kaalo » Fri Jul 05, 2013 7:47 am

I'm not really having any stomach problems other than very mild diarrhea. It's the sleepiness and headaches that I'm having a big problem with. I take it at bedtime.

I overslept this morning, shut off the alarm and went back to sleep. Pre-aubagio I NEVER did that. I swear I could sleep around the clock, I can even manage to sleep with these horrific headaches. I fell a few months ago and have a torn ligament and broken bone in my shoulder - I think sleeping so soundly is not helping my shoulder heal because when I finally get up my shoulder is very painful - wasn't the case before Aubagio.

I started on Rebif which I was on for 4 years, the side effects were horrible and never lessened. The entire time I was on Rebif I suffered from Raynauds. Switched to Avonex because it meant I only spent two days being sick instead of nearly all week. Side effects were the same as Rebif but the Raynauds totally disappeared. The side effect NEVER lessened and seemed to get worse. I did that for 7 years and just couldn't make myself inject again. I switched to Copaxone which I did for about three months and was having really awful site reactions and since it was daily I always had three spots that were itching unbearably or hurting; in addition the divots all over. I decided to just quit all of it and I had a wonderful year. Had a mild exacerbation and started worrying so...Aubagio.
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Re: Aubagio

Postby standingtall » Mon Jul 08, 2013 12:42 am

Wow Kaalo, you have been through the DMD ringer with all the different meds. Sorry that you have not found one more tolerable yet, but I would still say it is too early to give up on the Aubagio. If you have only taken the med at night, maybe try taking it early in the morning. Regardless of time of day you take your med, do eat a healthy meal along with it. Eating at the same time as the med not only protects your stomach, but it also gives your body fuel to process it. Anytime I take any pill, even a vitamin, I will take a small amount of food. If I don't, even a vitamin can make me feel poorly and I don't mean sick to my stomach. I really think paying attention to what your eating with this could give you some relief, especially with the headaches.
As for your fatigue and difficulty waking up, I don't have anything for you on that. Other than to say I am jealous of your deep sleep. I am the opposite, and often have difficulty sleeping and/or going to sleep even when I am tired.
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Re: Aubagio

Postby DM » Thu Aug 08, 2013 7:57 pm

Been on Phase iii 5.5 years now and still on til its legalized in Canada. Should be by Oct 2014. Dont know what I was on for the first 2 years, and altho on the drug for the past 3.5 years, not sure which dose. No sideFX whatsoever, except for my thinning hair.
Last edited by DM on Sun Aug 11, 2013 4:19 pm, edited 2 times in total.
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Re: Aubagio

Postby isabel134 » Sun Aug 11, 2013 3:44 pm

I started Aubagio after finishing a 3 gram solu medrol treatment (1g. a day every other day). I didn't expect any immediate side effects since the information says it takes 2-3 months to become effective and the MS one to one nurse said side effects don't usually kick in for 7-14 days. After day four I was sick, but still reeling from the solu medrol treatment with tremors, dizziness, muscle weakness, and insomnia so I was unsure what symptoms were related to what. Then on day 5 it became clear that I had every side effect that was listed on the Aubagio paperwork. I couldn't keep anything down. I took it for a full week and finally gave up on day 7 when I was too weak to do anything and had lost almost 10 lbs. I can't afford to lose any weight. The steroids make me lose my appetite. I don't react the same as many others. I get crushing fatigue, the shakes, chills, and am achy all over. The Aubagio sent those symptoms through the roof and added several trips to the bathroom every night, eliminating anything I had eaten during the day. I became afraid to eat.

Trust me, I was hoping this would work because it is the first MS med I have been prescribed. I feel like I needed to share my experience so that others would know. I have a sister with MS who has been on Copaxone and Rebif and she has continued to work and live with few relapses. I am desperate to get strong enough to go back to work. My dose was 14mg. My Dr. responded by saying he would discuss it with me at my late October appointment. So until then apparently I have to just continue to decline. The steroids are not helping. I had hoped at the least that he would recommend that I take 7mg and see if I can tolerate it, then move up to 14mg once I was stable on the 7mg dose. If the 7mg dose didn't work then I would know to try another med. I am beyond frustrated. It took 5 months to get an appointment, a month of diagnostics, a month of steroids, a month of mis-scheduled appts to get into a drug trial which I ended up being too sick to get into due to the lapse in time. Now I will be starting all over, and in the meantime, untreated. Frustrated to say the least.
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Re: Aubagio

Postby standingtall » Tue Aug 13, 2013 12:10 am

I have been taking the Aubagio for a little over 5 months now, and so far have not had symptoms anywhere near as bad as you describe. Although everyone responds differently, my worst symptoms were experienced within the first couple of weeks. What I eventually figured out for myself through trial and mostly error, was that the best time for me to take the Aubagio was in the morning. Around 15-30 minutes after eating a hearty breakfast, I will take my daily dose (14mg) of Aubagio.

When I say hearty breakfast, I do mean hearty. Breakfast is often the largest meal I eat now everyday, which is a big change from my previous lifestyle of grabbing a cup of coffee and out the door I went......... An example of my breakfast now would be:
1. Fruit and sometimes vegetables. I often juice several fruits and vegetable together, enough to produce at least 8-12 ounces of juice. Kale, spinach, tomato, carrot, apple, orange, grapefruit, pear, strawberry, blueberry, etc. all find their way into my juicer and/or blender.
2. Oatmeal. About enough to fill a coffe mug. Often with a bit of agave nectar, or sometimes a little coconut oil for sweetner.
3. 1 egg with a small portion of meat (lean bacon or sausage).

That would pretty much be an average breakfast. Sorry for the meal plan, but I'm trying to help. I really found that for me, it was key to have a hearty and nutrious breakfast. Primarily to sort of buffer the Aubagio, and secondly I found that eating in a manner similiar to this really sort of pepped me up for the day ahead. Anytime I skimp, or eat poorly now I usually experience some symptoms of feeling washed out or even somewhat nauseous. I checked blood sugar, but that was very stable.
I also tried to work closely with MS one to one, but found that although they were very accessible they were not much help. This is somewhat understandable, as each person is so different. It really is unfortunately up to the individual, to figure out a lot of these things on their own.
If I can offer anything else to you, do not hesitate to ask or PM me as I do feel that Aubagio is worth the trouble of trying to stick it out.
Good luck.
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Re: Aubagio

Postby kaalo » Tue Aug 13, 2013 7:44 am

Almost finished with month two. The side effects are still with me. The ability to fall asleep as soon as I close my eyes (at work, at the wheel, anywhere) and sleep 24 hours easily have abated, a bit. The driving is still scarey, I still nod off. At work I can still fall asleep at my desk but it is not a severe. I am no longer over-sleeping and dropping into bed as soon as I get home. No longer drinking pots of coffee. Slowly getting past that. No thinning yet, still have loose stools although less severe. Had a BAD dizzy spell the other day. The mosquitoes don't seem to like me anymore :) and my allergies seem to have nearly disappeared.
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Re: Aubagio

Postby kaalo » Tue Aug 13, 2013 5:54 pm

Last few days I've had scarey dizzy spells. Not vertigo, dizzy to the point of losing my balance - not knowing where I am spatially. Also hiccups every time I eat. Weird. Guess it has built up in my system to the point of weird stuff happening now. Really fed up with trying to deal with the disease symptoms and every medication has just made my life miserable. What is the point in fighting off the disease if the drugs ruin your life anyway. What is the point, I guess it makes my "rarely here" family members more comfortable if i can take care of myself but it's totally not making me more comfortable. I broke my shoulder and i can't afford to go to ANY doctor now, i have to pay for the shoulder which they did nothing for. I am so afraid of falling again. My life is on a downhill slide. Sorry for being negative, I'm scared.
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Re: Aubagio

Postby standingtall » Sun Aug 18, 2013 9:08 am

I think we all get scared at times, especially when the disease rears it's head via new or worsening symptoms. The most frustrating thing about it is not knowing if it is the disease or the drugs your taking for the disease are the culprit for the symptoms.
Don't apologize for being negative, a little venting is understandable.
kaalo, seems like you have been here before and we talked about diet.........Just a suggestion, but from my previous post you can see that I changed many things about my diet and lifestyle in general. These changes have helped tremendously. Although diet modifications are not a cure as proclaimed by a few, they have improved my overall health and I believe have slowed my disease progression. Be active physically, modify your diet and take charge of your situation. It's hard, but I have changed doctors several times in search of someone who will work with me. Lot's of doctors will take your money and write you a script,, but keeping looking for one whom will work with you on integrative medicine and life style modification into your treatment i.e diet and excercise.
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Re: Aubagio

Postby Sbj2406 » Mon Jan 20, 2014 2:24 pm

Hi everybody. Just started Aubagio and is on my third day. Wanted to thank you for writing about your experiences so far. I've been trying to get a grip on what to expect and your posts have been really helpfull. Now I'm joining in.

I'm 32 years old, got my dx in november 2013 after a big lesion in my spinalcord. Aubagio is my first DMD. I've been feeling pretty good pre-DMD (except for the numbness and weak legs of course!) so I'm worried side effects may make me feel worse than I did before. Anyway: I take the pill around dinnertime and so far I've only experienced a mild headache, some mild discomfort (feeling tired/heavy) and some kind of warm, tight feeling in my legs. These side effects appeared after two hours and subsided quickly. So far so good! I've had a hard time waking up in the morning, though...

-sbj
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Re: Aubagio

Postby Slumby » Thu Jan 23, 2014 2:48 pm

Aubagio

The dr says that the mri shows no new legions
Afte 1 year on aubagio.
However, my condition continues to worsen at
what I feel is a rapid rate.  Another drug I started
about the same time was Norethindrone (I wanted
to see if progesterone made a positive change.
I gave it a hole year...  It did not.  I'm still hoping
to see a positive change by discontinuing this.

He says that alot of damage occured before i was
on a dmd.

TODAY I begin the Wahl protocol (switching from a 10
year+ vegetarian diet).
[14mg aubagio]
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Re: Aubagio

Postby standingtall » Wed Mar 19, 2014 7:52 am

Slumby wrote:Aubagio

The dr says that the mri shows no new legions
Afte 1 year on aubagio.
However, my condition continues to worsen at
what I feel is a rapid rate.  Another drug I started
about the same time was Norethindrone (I wanted
to see if progesterone made a positive change.
I gave it a hole year...  It did not.  I'm still hoping
to see a positive change by discontinuing this.

He says that alot of damage occured before i was
on a dmd.

TODAY I begin the Wahl protocol (switching from a 10
year+ vegetarian diet).



Hey Slumby, Just curious as to how you feel overall about the Aubagio. I have been on Aubagio for just over a year now and although it is great not having to give myself an injection, I am not pleased with my progression rate which has increased since changing from my previous DMD. The heck of it is, there is no way to know for sure. I have a Dr.s appt. soon and will be discussing my options then.
Also curious as to what other diets you may have tried and what convinced you to go from vegan to Wahl's? This is not a loaded question, as I am not vegan nor have I tried the Wahl diet/protocol.
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Re: Aubagio

Postby shinyredsparkles » Thu Apr 03, 2014 1:22 am

Hey all! I've been on Aubagio for just under a year and a half now.
For the first 3-4 weeks, I felt reeeeeally queasy/nauseous when taking the tablets. I started taking them just before bed so that I would sleep through the worst of it... after a month, it was fine.
I posted in another thread about hair loss - I suffered this badly for quite a long time, probably about 10-12 months but my hair is now finally growing back (lots of new growth - yay!) so I don't think it did any permanent damage.
I had a minor relapse in the first month (a mild case of optic neuritis), but since then I've had no other relapses and no new lesions since being on the medication. Still suffer massive bouts of exhaustion every now and then but for the most part it's manageable...
So for me, in the end it's been worth it - I was on Avonex previously and that really didn't agree with me so I'm pretty happy to find something that's easy to administer and doesn't knock me around too much.
Good luck to you all, I hope it gets a bit easier :)
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