Aubagio... any experience?

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Aubagio... any experience?

Postby MSandI » Tue Apr 29, 2014 4:37 pm

I have agreed with my neuro to start the aubagio treatment. I have been dmd free for 8 months. Previously on avonex. Turns out that I do need meds because diet, nutrition and gluten free did not keep me in remission. I have an mri appointment and soon to start aubagio. I guess what I am looking for is how this drug is working. My neuro tells me that it is the most tolerated. Do I want dmd? no! Do I need it? yes. I have been on this board for some time now. I have read most of the postings in all topics. I am asking not for scare stories...but the real experiences for me to get an idea of this dmd.
Thank you
Ann
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Re: Aubagio... any experience?

Postby euphoniaa » Tue Apr 29, 2014 5:02 pm

MSandI wrote:I have agreed with my neuro to start the aubagio treatment. I have been dmd free for 8 months. Previously on avonex. Turns out that I do need meds because diet, nutrition and gluten free did not keep me in remission. I have an mri appointment and soon to start aubagio. I guess what I am looking for is how this drug is working. My neuro tells me that it is the most tolerated. Do I want dmd? no! Do I need it? yes. I have been on this board for some time now. I have read most of the postings in all topics. I am asking not for scare stories...but the real experiences for me to get an idea of this dmd.
Thank you
Ann


Hi Ann,

It sounds like you've made your way around the forums, but have you found the one dedicated solely to Aubagio?

aubagio-teriflunomide-f53/

It's a relatively new forum, so you may not have noticed it yet. Good luck with your new treatment!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Aubagio... any experience?

Postby MSandI » Wed Apr 30, 2014 5:57 am

Hi euphoniaa
I have read the aubagio topics. The most common is hair loss, but to treat with biotin. Which I already do. I am looking for someone to share with me their reactions to the dmd. Is it working? Do you feel a difference? Do you see a difference? Depression? Do you recommend anything that makes a difference. I truly hope this med works for me, as I have had a terrible road with avonex. Thank you for the encouragement euphoniaa!
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Re: Aubagio... any experience?

Postby loopey » Wed Apr 30, 2014 9:37 am

I have been on Aubagio for 15 months. Aside from a little hair loss I have had no side effects. I had a follow up MRI after one year and it was clear of any new lesions. I have had some weight loss but I am not sure if it is Aubagio. In any case, for me it is working and is very well tolerated. Good luck and let us know how it works out.
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Re: Aubagio... any experience?

Postby MSandI » Wed Apr 30, 2014 4:37 pm

Thank you loopey for your experience. That is very kind. I will let you know how it goes. I am going through all the paper work now, my RN says a couple of weeks to finish the paperwork and start the med.
Ann
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Re: Aubagio... any experience?

Postby standingtall » Sun May 04, 2014 3:01 pm

On Aubagio for a year and half. Have not had a good year and a half and am about to go off Aubagio. I do not know if I am going onto another DMD or not? I was actually better prior to going on the Aubagio, but had one lingering attack and thought I needed to get on something. Since Aubagio was oral and had fewer side effects than most, it did have appeal compared to other dmd's. All that being said, I am disappointed because any of the other dmd's that I have not already tried have many more side effects.
It will be interesting to see what my health is like switching off the Aubagio. If it gets worse, I may go back to it. Like I said, it was a joy to take a pill and not have all the side effects like the others. When you deal with all the other symptoms, we don't need anything else to make you feel bad.
Good luck with the Aubagio, hope it works great for you!
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Re: Aubagio... any experience?

Postby MSandI » Mon May 05, 2014 11:11 am

Thank for your reply standingtall. Oh I hope that I do get better than I am now too. Fingers and toes crossed (feels like toes are crossed all the time anyway..haha) I wish you all the best as well. I do have 2 burning questions. One is did depression bother yyou at all? and the second, did you ever have more than one alcoholic drink while taking aubagio? I wish you the best as well.
Ann
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Re: Aubagio... any experience?

Postby MSandI » Sun May 11, 2014 3:34 pm

Hello
I was just wondering is anyone taking aubagio and supplementing with milk thistle?
Ann
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Re: Aubagio... any experience?

Postby standingtall » Tue May 13, 2014 6:16 am

Sorry for the slow reply.........I have never tried Milk Thistle, although it does interest me somewhat and I would be interested to here what others think about it. I have always been somewhat leery of overloading the liver with supplements, especially while taking something like Aubagio which does impact the liver. This is why they monitor liver function.
I never had any depression issues that I would attribute to the Aubagio. I have been depressed a few times, like when I suffer an MS relapse. But that subsides as the attack subsides, and I figure most folks would feel the same. I personally do not desire to take another pill unless it is absolutely necessary. It also helps to have someone close enough to you to monitor for depression. My spouse and I have discussed this issue previously, about a year after diagnosis, so that they can kinda monitor me for that. Depression is one of those things that can sneak up on someone, and the person not realize it. But the answer to your question is no, Aubagio did not cause depression for me.
As far as alcohol, I have always been a casual drinker. Although I have almost quit now, as I have not had a drink this year. I do still drink at times, but just feel that it is not in my best overall health interest to do so very often. As mentioned above, the liver function is impacted by many of these DMD's and continuing to cause it to work even harder with the alcohol can't be in our best interest. When I do drink, I have learned to enjoy a bit of wine. I mean hey, at least there are some health benefits to a good glass of red wine..........
I have gone off the Aubagio officially after almost a year and a half. I am about to start Rebif at the advice of my Neuro. I will miss the Aubagio for it's ease of dosing and few side effects. I am also very apprehensive about the rebif for all of it's side effects and will not give it very long if it makes me feel worse. I wish I had better luck with the Aubagio, but feel it is worth a shot for many as it has worked for some and offers a much higher degree of tolerability than many of the others.
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Re: Aubagio... any experience?

Postby MSandI » Wed May 14, 2014 12:07 pm

Thank you for your reply standingtall. Purolator dropped off my aubagio this afternoon. I will take my first dose on Friday. It is 14mg/day. I asked my ms nurse today about milk thistle she told me to call the med info line. So that is my next move. My BP checked today by family GP, it was 120/80!!! I am so excited, I have not seen the number for 1 year or more. Stress is terrible thing. I am finally coming to terms with this dmd and still learning to come to terms with ms. If I could wish everyone and myself included well, it would already be done. Have good afternoon.
Ann
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Re: Aubagio... any experience?

Postby standingtall » Thu May 15, 2014 11:14 am

Your sentiment is appreciated Ann, I wish you and everyone else well also. Most peoples lives are difficult enough, without the added twist of chronic disease. MS is unpredictable, just like many other diseases. I think that unpredictability of it is what makes me and many others worry at times. The point I have had to arrive at, is that life without MS is unpredictable. So really not that much has changed. Make the most out of every day, live without regret as much as possible and make yourself a priority. I know that I neglected myself in the past, but now I must take care of myself if I am going to be able to take care of anyone else in the future.
Best of luck with the Aubagio, and keep us posted.
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Re: Aubagio... any experience?

Postby MSandI » Fri May 16, 2014 4:23 pm

First pill taken today. No side effects as yet, it has been 5 hours. I am so hopeful.
Ann
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Re: Aubagio... any experience?

Postby MSandI » Sun May 18, 2014 4:46 am

Today is day 3. All is well, there is some gi upset. My left arm has some increase in movement and I have noticed some increase in my balance when standing/walking. There is hope for me, time will tell. I have not changed my vitamin regimen and nutrition in the morning is greek yogurt with blueberries and almonds(that is my only change to diet). I do take my pill with food. I do not get a headache, which is good. The scared feeling to take this med is evaporating because I fell some benefits. Thanks for listening.
Ann
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Re: Aubagio... any experience?

Postby MSandI » Sun May 18, 2014 4:37 pm

This evening I have been experiencing the "ms hug". I have never had it to this extreme before. I have been googling but not much luck there. It says increase fluids, use heat pad, and warm bath. I am nervous of applying heat, but have drank lots of water. I have looked through tims for any ideas but I cannot find anything. Any help would be great.
Thanks
Ann
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Re: Aubagio... any experience?

Postby standingtall » Mon May 19, 2014 12:21 am

Ann, sorry to hear you are having problems. I had my first experience with tightness around my ribs about 6 months ago. It was not severe, nor painful. It lasted for about 2 weeks and I did nothing for it. Sounds like yours may be more severe. Sorry that I have no tips for that issue particularly, but you may try a muscle relaxer just to see if it helps. I keep flexeril on hand for any nasty muscle issues that flare up, that can't be resolved with stretching or magnesium citrate.
I also do not recall the 'hug' being a potential side effect of aubagio, but it could be a stress factor that enabled a flare. Either way, consult with your prescribing physician. Hope it gets better and don't let it get you down. Better days are soon ahead!
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