I have stopped Aubagio

[iamziggy]

My whole body was going into spasms over and over, last week. I went to the ER and I did have a fever and an UTI, but I really feel it was the Aubagio and so I stopped it. My husband wants me off of it, so I am doing the wash out after I am done with my antibiotics. I going back on Copaxone, even though it hasn't held back the lesions, but it's better than nothing and I can tolerate it. I was on Rebif and it affected my liver and then on methotrexate and had problems. I think Aubagio and some of these drugs are still so new and long term effects have not been reported yet. What do you think?

[hunterd]

bump. I have no experience with this, I just wanted to bump this up

[Alicious]

The medication Aubagio is based on, Arava, has been on the market for rheumatoid arthritis for many years. Since Aubagio is the chemical that he body breaks Arava down into, it is unlikely that there are wild side effects that are unknown. Yes, there could be, but this isn't a chemical fresh out of the gate. It also stays in your body like nobody's business, so if the spasms have stopped before the washout, it's almost certainly not the med. (I'm not a doctor, absolutely run that thought by your neuro if it's relevant to your decision.)

That being said, if you don't like it and it feels wrong then it's best to go with something you are comfortable with. One thing I like about Tecfidera is that once it enters the bloodstream it is gone in 30 minutes to an hour--you breathe it out Unlike Aubagio, it's gone very quickly.

[pb909]

I started Aubagio in early January about the same time Alicious did (if I remember correctly) and remain on it.

I chose it after discussing in detail with my neurologist and reading up as much as I could. The RA drug tie was also a big factor.

I made the best decision I could based on all the info at the time.

I've had no adverse liver tests nor other side effects. Only occasional diarrhea that I think is from it since it's more than I had previous to starting.

[iamziggy]

Bladder issues

I was on Aubagio and started having bladder problems. I went to the ER with severe spasms. I did have a uti, but it cleared up. I was having to urinate every hour even after the uti cleared up. I was having pain and went to a Urologist. She gave me medication, but it didn't really help. I finally did the wash out and now I no longer have bladder issues. Just wanted people to know, in case, this happens to you. I really wanted Aubagio to work for me.

[zilphia01]

other affects

I have been taking Aubagio for 3 months. My LFT's are normal so far, BUT I seem to have these sores and spots on my skin that just do NOT want to go away.

Some appear like pimples on my face, arms and shoulders. A few are like small sores that never seem to go away, even with antibiotic cream.

And this may be entirely not related, but I am so so so cranky lately. This is absolutely NOT my character before this med.

Again, this may all be coincidental, but I am prob going to talk to my Neuro at my next appointment to change to something else.

[tommylee]

Thank you, thank you, thank you!!!

A big thank you to everybody that responded to this post!

I took Avonex for more than a decade and stopped after deciding it was just making my life worse.

I have been very active with diet and exercise. This takes a lot more personal effort on my part, but it gives me the illusion that I am in control of my MS, and I feel better.

My Neuro respects my choice to treat myself with a very strict diet and exercise and marijuana. However she was urging me to reconsider a DMD.

I have had the same Neuro for 15 years and her comment was something like, " I can't endorse your method, but I can't argue your results. You are doing great." " I don't think I would change a thing... But I would feel more comfortable if you were on a DMD."

Now I would love to blow her off as a Quack that has been brainwashed by Big Pharma that I must be on a DMD, but I don't think that is the case.
She seems to be very bright and well informed. After all these years we have developed a good relationship and she has always been very helpful and professional. I have developed a great deal of respect for her opinion. She also seems to respect my opinion and observations.

I had started to contemplate adding a DMD back into my program and was leaning towards Aubagio.
You all have convinced me to stick to my chemical free all natural approach. (which is what I wanted to do anyway.)

But I am still a little haunted by my decision due to my Dr's belief in taking a DMD. (but I seem to feel better with out them.)

Have any of you found a treatment that does not have side effects that seem to mute the point of taking them?
How many of you have decided to fly without a net and skip the DMD's altogether? For how long?

I have been doing it for 3+ years and my life seems better, but it kind of feels like high stakes gambling.

[zilphia01]

A big thank you to everybody that responded to this post!

but it kind of feels like high stakes gambling.

I am very interested in hearing what people will say to this, as it seems to me that that the % effectiveness of the DMD's are so low, that taking them is Low Stakes Gambling.

I have NOTHING to back me up as far as evidence, except what the companies are stating for effectiveness for their product.

[Lonilee]

I respect ur choice

For me personally not taking a preventative starting in June brought me down worst attack in 15 yrs I stay on preventative and diet at same time and feel Much much better

[martinapickett]

I was looking for some info on Aubagio. My Neuro asked me last year to consider something else. Rebif is so depressing for me and I feel sick the day after the shot, just when I feel better its time for another shot. So I am ready to switch, however I do not want to die trying to stop having flu symptoms. Hair thinning not an issue for me, cardiac arrest is a problem for me. So I shall see. I told her today I would try the trial, waiting on her office to call me to get me started on the program. I will let you know when I start and what is happening. God bless us all!

[Carole7]

Aubagio was the last option for rme. Had to stop. How are you doing w/o DMD?

Aubagio was the last option available to me. I was on interferon's for 10 years. This reduced my immune system too much. I required IVIG for 10 years. Now IGG levels are low, but not low enough to quality for IVIG. Aubagio caused breathing issues plus other smaller issues.

How are you doing without a DMD? Could you share what you do?

[grammy2many]

IVIG

Carole7-My dr. has suggested IVIG as a method to improve neuropathy and hopefully delay progression. My neuropathy is only annoying at this point and although I have pain and extreme fatigue I manage my life pretty well. I have gone from walkingwithout problems, to cane for walking around and a mobility scooter for longer distances in the past 5 years.

How was Ivig for you and do you think it might help with my problems or is it overkill. I think my neuro is a little desparate because I'm SPMS and he wants me to be on something.

[hobbit]

Flying Solo

Copaxone, Rebif and Tysabri all failed. Tysabri was okay for the year I was on it but I turned JCV+ with a very high titre count. The only one left is Aubagio and I'm on the fence.

With a bucket of pills (for symptoms) and a bucket of MMJ so I can help avoid the bucket of pills, I am still progressing. I'm developing drop foot in the good leg, vertigo has gotten so bad I get motion sickness if I turn too fast. Not fatigue but lassitude, when you have to drop what your doing and lay down before you fall down has increased. These are not new symptoms but symptoms that are worsening.

My Neuro and I are waiting until we find out what is wrong with my gasto issues to make sure my liver isn't compromised before we discuss Aubagio again. I have had MS for 22 yrs.

Peace,
Anna

[Carole7]

Carole7-My dr. has suggested IVIG as a method to improve neuropathy and hopefully delay progression. My neuropathy is only annoying at this point and although I have pain and extreme fatigue I manage my life pretty well. I have gone from walkingwithout problems, to cane for walking around and a mobility scooter for longer distances in the past 5 years.

How was Ivig for you and do you think it might help with my problems or is it overkill. I think my neuro is a little desparate because I'm SPMS and he wants me to be on something.

I was on IVIG monthly for ten years. I am now on Hizentra subq weekly. It is not for MS but it is the only 'therapy' that I am/was on that could help MS. It may be a good option for you. My MS progression has been very slow. I used a cane when I started IVIG, I have added a walker and scooter when I am too tired. I've had MS for 27 years so I'm doing pretty good.