anyone taking this?

[shel67]

Anyone who is one the DMD, please post and tell me how it's going?

[TinaP303]

Hi shel67,
I started taking Aubagio in December 2014.
It's my first DMD, so I can't compare it to anything, but so far things are great.
I did have a short (2 week?) episode of diarrhea about a month after starting, but it was mild enough that I didn't even bother with an OTC remedy. No other side effects at all. All the blood tests that are needed have come back normal, and best yet, no MS relapses or worsening MS symptoms.
My insurance company was a hassle because it wasn't one of their first tier choices, but Genzyme (manufacturer) has been a real help with getting coverage cleared and they've even provided me with the meds at no cost during the insurance appeal process.
I'm pleased with how Aubagio is working for me.

[shel67]

Thanks. I can't find a lot of reviews on it. I'm scared out my mind.

[TinaP303]

Scared of Aubagio, or of taking any DMD? Or just being stuck with the crap that is MS?
I've been terrified of all 3. I'm still not exactly thrilled to be taking any med, but I'd rather not take the gamble to go without.
You need to be confident in the medicine you take. Talk to your doctor. Check out Aubagio's web site for info. They sponsor dinner (or lunch) meetings where you can get a lot of info (and a free meal). You can search by zip code. They've only got a few week's schedule posted at any time, so check back there if there's not one close to you.
The most important thing is for you to feel that you're making the right decision for you.
Best Wishes.

[shel67]

1) scared it's not as effective. I want the big guns.

2) I don't want to lose my hair.

3)I work with the public. Afraid I'll catch everything.

4) the liver, and the skin condition and the tingling in the hands and feet.

5) freaking out I'll get the shingles.

6) I'll be sick as a dog with headaches,, stomach problems. I have to work and I can be sick for months.

[TinaP303]

1. Big guns. I get that, I really do. Is your insurance company fighting you on a med choice?
2. I haven't lost hair, thank goodness. Statistically most people don't.
3. Since starting in December I've had one small cold, lasted a day. I've got small kids who bring home EVERYTHING and work too.
4.The liver, skin, & tingly stuff is, again, stuff that affects a small percentage of people taking it. I had blood tests monthly for the first 6 months to make sure that things were OK. They are. I do have tingly hands at night, but I did before anyway, so...
5. I get headaches easily, that's one of the reasons I went to the neuro to begin with, but I don't have more than before, I've had no stomach issues at all (other than that bit I told you before), and am healthy enough to keep up with full time work, the house, kids, and karate class once a week.

I hope I've answered some of your concerns.
All that aside, your choices are yours and hopefully you & your doc will work out a plan that makes you feel confident.

[shel67]

Thank you Tina. Has the Aubagio made your MS feel better?

I don't have insurance right now so that may have a lot to do with it. Originally she wanted me to do Copaxone but the shot I said no. So she came back with Aubagio.

Aubagio called me today and I had a long talk with the guy. He was helpful. He is sending me the paper work but suggested I call different manufactures of other med to check their financial assistance. From what he said I'll get Aubagio med at no cost.

And the doc wants me on the 14mg, not the 7. I just wish I could get more feed back from people on it.

[pb909]

Thank you Tina. Has the Aubagio made your MS feel better?

I don't have insurance right now so that may have a lot to do with it. Originally she wanted me to do Copaxone but the shot I said no. So she came back with Aubagio.

Aubagio called me today and I had a long talk with the guy. He was helpful. He is sending me the paper work but suggested I call different manufactures of other med to check their financial assistance. From what he said I'll get Aubagio med at no cost.

And the doc wants me on the 14mg, not the 7. I just wish I could get more feed back from people on it.

I'm currently getting their copay so it's no cost to me.

[shel67]

I'm currently getting their copay so it's no cost to me.

How is your experience with this med? Is it working? Do you feel improved? Do you feel okay on it?

[loopey]

Over 2 years on Aubagio

I have posted a lot about Aubagio. I have been on it since March 2013. It is my first medication since dx. I haven't had any improvement but I didn't expect any since the meds only slow down the flares. I have not had any new lesions since beginning Aubagio, only lost a little bit of hair and the only side effect that I am sure of is weight loss. I have lost over 40 pounds and it is now of some concern to me.

I have had the regular blood tests; all OK. I am happy with it as long as I can get the weight loss to level off.

[pb909]

How is your experience with this med? Is it working? Do you feel improved? Do you feel okay on it?

I started Aubagio 14mg January 2013 after 36 Tysabri infusions.
Hard to tell how well it's working since I'm progressive/relapsing so not sure how my progression would have been without taking it.
Only have had 1 relapse that started mid-January 2014 and lasted about 1 month. Think I only had 1 relapse while on Tysabri.
Only side effect has been some periodic diarrhea but nothing intolerable.
Since I already was a victim of a receding hairline couldn't tell about hair loss - but it does not seem any quicker!
Otherwise no other side effects and I feel fine.
With mfg copay I do not have to pay anything.

If you read thru the Aubagio threads there are others that had some struggles, even some that quit and went thru the wash-out.

My Neuro wants me to switch from Aubagio to Lemtrada thinking it's the best option for me after its recent FDA approval. My approval is pending.

Good luck to you.

[TinaP303]

Honestly I haven't noticed any MS symptom improvement since being on Aubagio, but that's not the main reason for taking a DMD-slowing flares/future progression is. And my symptoms are kinda atypical. I'm "lucky" enough to have Trigeminal Neuralgia as my main symptom, so that needs to be controlled by other meds. Keeping the MS "calmed down" keeps the TN "calm" which means more pain free days for me. That is huge for me. Gigantic.

My insurance wanted me to start out with a different DMD, one of their "preferred" drugs, but with eczema I wasn't willing to become a pincushion and have THAT flare up. So, for now, Genzyme is giving me the medicine at no cost while I go through the appeal process with my insurance company. They've said they'll supply me for a year at no cost. Hopefully the appeal will be settled & approved by then.

[Tammy-Rose]

Weight loss and aubagio

I am finding the same I am losing weight also, I find it hard to eat. I seem to have no appetite. Either I am going great or in bed exhausted. Do you find that also? My first meds were copaxane (needles) they didn't do a thing for me.Many new lesions, so far these are a little better but not much I think. The side effects are really bad for me.

I have posted a lot about Aubagio. I have been on it since March 2013. It is my first medication since dx. I haven't had any improvement but I didn't expect any since the meds only slow down the flares. I have not had any new lesions since beginning Aubagio, only lost a little bit of hair and the only side effect that I am sure of is weight loss. I have lost over 40 pounds and it is now of some concern to me.

I have had the regular blood tests; all OK. I am happy with it as long as I can get the weight loss to level off.

[loopey]

Side Effects

I am finding the same I am losing weight also, I find it hard to eat. I seem to have no appetite. Either I am going great or in bed exhausted. Do you find that also? My first meds were copaxane (needles) they didn't do a thing for me.Many new lesions, so far these are a little better but not much I think. The side effects are really bad for me.

As I said, I have lost too much weight and it hasn't stopped. I have hardly any appetite and if I eat I feel sick. But, having no flares for almost 3 years makes it worth it to me. After my last flare I had NO improvement and I am very afraid that will happen if I have another. I am not exhausted either, hardly ever. I can't fall asleep and when I do I usually wake up after 4 or 5 hours. I wish everyone could find something that worked. MS is a horror.