Frustrated!

[agapepilgrim]

I have posted here before, but for some reason the site keeps stating I need to post a profile. I would really like to know if anyone has taken Aubagio and if helped any, or what were any side effects? Thank you!

[mpd731]

I have been taking it for about 6 mo now. I have had no problems with it. I have had just one relapse. Good luck.

[agapepilgrim in reply to mpd731]

Thank you so much. On my 5th day, so far no bad effects, except a little dizzy, a little stomach ache, but then I had those off and on before anyway!

[jkdavid99]

I am very interested in this too. I was supposed to start Aubagio 6 months ago but am too scared to take the pill. I am shooting for Thursday since I have a lot of things going on this week. I only seem to read the very bad on different sites so any good news about Aubagio would be great to read.

[agapepilgrim in reply to jkdavid99]

My first neurologist told me to start Capoxone. The shock of the diagnose and the shock of giving myself a shot 3x a day scared me to death. I researched and all I found was horror stories! Then, my primary doc wanted me to get a second opinion and I was told Capoxone wsn't the best choice to stop progression for brain lesions and he immediately ordered Aubagio. How should I know what is best for me?? So after a month or so, financial aid came thru, since I was first diagnosed on 6/6/16/ I started this pill on Sept. 1 and mentally officially accepted the diagnosis. I have a first cousin who had rapidly progressive MS who died within 15 years of diagnosis, but hers was all in spine. I was too scared to take the shot; I would rather take a pill anyday. I hate needles, so I didn't want the transfusions. I do have to get monthly blood work for liver checkups. Just want the progression of lesions to stop. They progressed rapidly from 2010 to 2016, but not active now, thank my blessed Lord.

[Ashirva in reply to agapepilgrim]

It sounds like you're not getting very good information! Copaxone is injected three times per week - not per day - just under the skin! An 'autoject' is usually provided to administer it. The autoject makes it VERY easy to administer the shot.

The original Copaxone was injected once per day. I was on that one for years and then decided to take a break for awhile and wait for the 3-times-per-week one. After some time (the 'new' Copaxone hadn't been okayed yet for prescribing) my neurologist suggested I start Aubagio.

I'd been on Aubagio for about 2 1/2 months when I suddenly had horrific neuropathy and pain in my hands and feet and could barely walk. Dressing myself was an absolute chore. I started on Ampyra, which helped with the walking, but I was still suffering big time with the neuropathy and pain, mostly in my feet.

My new neurologist took me off the Aubagio and said neuropathy was one of the side-effects they were finding with it. I had to take a medication to clear it out of my system and then change to a new MS medication.

I'm now on Tecfidera and Duloxetine (Cymbalta). The neuropathy has improved to a certain extent (I no longer writhe in pain every night!) but it hasn't vanished completely.

I hope you don't have any problems with neuropathy or liver function! Good luck with your treatment. Take care!

[mpd731 in reply to jkdavid99]

I have been taking Aubagio about 9 months now, I have had one relapse but I have had some other medical problem that might have aggravated the MS. Good luck to you.

[agapepilgrim]

Thank you. I am basically scared of all this medicine. Theajority ofMSers seem to have negative side effects

[plosed06]

I have been taking Aubagio for 3 months. The main side effect for me is hair loss. I also had diarrhea a few times. No relapses. Won't know until the end of the year if it is helping with brain lesions.

I first started with Copaxone, 3x weekly. I used AutoInjecter. It was easy to use, but uncomfortable. After 2 months I started to get side effects, like very weak legs and chills. Neuro switched me to Aubagio.

So far, blood tests are okay. But every month I see the numbers creeping up.

[Kj9681]

I've heard of it. Realitor's mom...spoke to her. She's over 60, and still on her feet. Said she uses a cane at times. That's all I know. Sorry I couldn't be of more help. Blessings

[Elle61]

Hi Agapepilgrim , My Neurologist wanted me to try this too. I hesitate with this drug , for myself, I am pron to UTI infections and worry because they say infections are not good with this med. I admit I'm a baby when it comes to side effects. The Aubagio Nurse called me 2 times before I backed out , they are very helpful. I want to hear from people that they think it is helping before I take the plunge, keep me informed if you decide to that it.

I took Avonex, Rebif, Copaxsone in a span of 15 yrs. It didn't help me , I could walk easily when I started and now I use a walker all the time.

I'm still walking and that is a wonderful after 37 years.

[agapepilgrim in reply to Elle61]

I will. You are take too much of a "baby" if you took Capaxone! I was too much of a baby to give myself shots, and my huband was afraid of hurting me or cause a heart attack if he hit a vein. That's what the first neurologist wanted me to take. Then I got a second opinion and he put me on Aubagion. Almost through first week, and today is the first day I have had energy in a few years! I actually repaired a few things in my sewing basket! Usually my neck or back is hurting too much to tackle one piece. Of course, now my neck is hurting, but i it was worth it! I am scheduled for a new MRI on 16th of this month and I will post again then.

[agapepilgrim in reply to agapepilgrim]

I meant you are NOT a baby if you take Capaxone!

[Elle61 in reply to agapepilgrim]

I took them all for 20 yrs. They didn't stop progress. Doctor want me to try Aubagio...I'm waiting....keep me in your loop about how it goes for you

[agapepilgrim in reply to Elle61]

So far (1 week) no nausea or headaches, but hair is thinning. (It was already thinning at age 69)

[agapepilgrim in reply to Elle61]

Elle61 and to all the others involved. In this thread if talk about Aubagio the neurologist took me off Aubagio 2 months after I started. Severe bronchitis and asthma that didn't go away with round of usual meds. Now on second round of stronger meds to stop the bronchial problems, but he said it would take awhile. I told him with my 40 yr history of it and pneumonia I was surprised they ever started. Cites he cleared himself by saying he didn't put me on it (new doc) so now I am on nothing - except MS monster symptoms!!! Paying a lot of money for inexperienced neurologist!!

[Elle61 in reply to agapepilgrim]

Thanks for the update. I never started it....i'm just tired of taking drugs into my system and having them beat me up more than MS. Oh well , I'll probably wait till the next new drug shows up, Ectrims. In about a year this new drug might be helpful for secondary progressive MS.

[Joalyn]

My husband has been on Aubagio for over 2 years and is satisfied with it and so far so is his neurologist. I started a discussion thread on this topic titled, Aubagio.

[Joalyn]

My husband says everybody has something with just about anything so just give it a fair trial and only you can know what's going to work best for you.

[RobertCalifornia]

I took Aubagio for 3 months last year. Had diarrhea once every six or seven days wth no warning that it was coming. Neurologist took me off of it. I had no other problems with it, but diarrhea is one of the side affects listed as common. I was advised against the flu shot because of the weakened immune system.

[CalfeeChick CommunityAmbassador]

Just going to say you are all so brave. This site has been so helpful to me! I was just diagnosed on 8-3-16. I'm 68 and am going to try infusion therapy with Tysabri. Trying to be aggressive to get some remission. Waiting for all those authorizations. Being older, my doc has requested further evaluation at UCSF Sept. 21..

[agapepilgrim in reply to CalfeeChick]

This site has helped me a lot, also. I am 69 and first diagnosed on 6/6/16. Doctor said it was very unusual to be diagnosed at my age, yet, on this site I am reading more and more people are not diagnosed until in their 60s because no doctor ever bothers to do a contrast MRI!!! I was sooo angry for 2 months until I started reading this site and found out I was not alone in being misdiagnosed. I was diagnosed with severe fibromyalgia 20 years, now the neurologist said it has been MS all along causing all my symptoms! Sure took a lot of medicine that didn't help! And then he asks about any eye problems! Yep, when I was 17 I had temporary blindness in left eye for a few hours every couple days. Eye doctor said I was stressing out over the prom! Neurologist said that was first appearance of MS. Just makes me angry. First MRI was 2010 and neurologist said I had a touch of demyelination and white matter disease, but not progressed enough for MS medicine. I should go back and sue that doctor!!! NOw I am told no such thing as just a little bit of MS. I am so glad I can sound off here and everyone understands!

[CalfeeChick CommunityAmbassador in reply to agapepilgrim]

We just spent hours at UCSF MS Clinic yesterday with their top Neuro. He says he doesn't think he would of diagnosed me off of the MRI the first neuro did. He's now getting me set up for Contrast MRI and a spinal tap. He gave me a thorough exam and does say all my sypmtoms are in line with MS, so I do probably have it.. If you get a chance, would you reply with a description of the contrast MRI. Mine is in 2 weeks and I've never had a contrast MRI. Lynn

#CalfeeChick

[agapepilgrim in reply to CalfeeChick]

@CalfeeChick just like regular MRI except they ALSO shoot a dye thru IV in your arm. It feels cold going through your vein. I have small veins that usually collapse, "run and hide," etc., so I was worried about that, but this time, thank the good Lord, she got my vein on first stick! So, it was a breeze. But, I did have a dry throat and coughed, so she had to start over! So, if like me, you choke on your saliva sometime, be sure you have a mint in your mouth! Cause it takes a little longer to do the brain and cervical area (if that's what doc orders, did with me) (he found 2 lesions in my neck this time, also, besides the 8 in brain). After coughing, I had to drink a glass of water, so she had to reset the MRI machine. But, no pain, just patience! May God be with you, grant you peace and patience. MS requires a lot of that!!

[Strawberryfields in reply to CalfeeChick]

If you have a sensitivity to iodine be certain to question the contrast ingredients. Best of luck to you!

[Blue51 in reply to CalfeeChick]

Good Luck

[Blue51 in reply to CalfeeChick]

Good Luck!

[jkdavid99]

For those of you on Aubagio, do you take at night or morning? With food or without? I have decided to start taking it either Wednesday night or Thursday morning. This is after I have had the pills in my purse for 6 months. Queen chicken here.

[Blue51 in reply to jkdavid99]

Take mine in the morning after I had breakfast. I don't think it matters with or without food? I was also a chicken, but have been on since January. Good Luck!

[Elle61 in reply to Blue51]

Did you have any side effects from Aubagio?

[agapepilgrim in reply to Elle61]

No not any been on it for 2 Weeks

[Vlbrown57]

agapepilgrim I have numerous side effects from Aubagio but not nearly as bad as copaxone and avonex. Tingling and numbness in my hands and feet are the newest ones. Diarrhea and breathing trouble during the night disturb my sleep. But my mri in May shows no new lesions. Hope this helps. God bless.

[agapepilgrim]

Thank you so much. I am glad I didn't start the Capoxone like the first nuero wanted.

[Blue51]

Early January 2014, I woke up and had lost the strength in my right arm and leg. I was 63. Still weak, but most of the strength is back. After many tests I was diagnosed with clinically isolated syndrome by my neurologist. Finally, in December 2016 at the age of 65, I got the MS diagnosis from my new neurologist. A lot of doctor's visits, tests and changing of neurologists have happened since then. Also one relapse. December 2015 my latest neurologist told me I had MS and prescribed Aubagio. I read all about it and had many questions for him after he prescribed it. I have found with this neurologist I have to be very proactive. I am on an HMO and don't have many options so have to be prepared for my appointments. I was also afraid to start Aubagio. To me is was Big Time Medicine! Finally got my act together and started it in the middle of January after my second relapse. My relapses make my feet feel like sponges, toes don't feel connected to my feet, and calf muscles feel tight as rocks, but soft of course, when I touch them. And I think that stress and too much heat and humidity do me in, but mainly stress. I am also on Lyrica once a day. I take my Aubagio in the morning after breakfast. Side effects for me are occasional diarrhea and some hair loss. My lesions are mainly on the spine. Just had another relapse a few weeks ago. So hasn't helped relapses, but don't think it is supposed to, just new lesions and that takes many months for it to kick in if I understand how it works. I am still angry and sad about my diagnosis, as it prevents me from sometimes being the grandma I want to be to my 4 grandsons, and not sure my family "gets it" that I have this disease and I am physically not the person I used to be. I need to accept and take charge, but it depends on the day. One last thing about Aubagio. As I said, stress is my biggest enemy. I do yoga and I try to prepare for situations where there may be stress, but sometimes I can't control my feelings and then I relapse! Anyone else having this as a problem? Lyrica may be an issue too? Have seen counselors in the past and hoping to find a new one. Trying to stay off of anti-depressants. And trying very hard to be me and move on. Thanks for allowing me to vent!

[agapepilgrim]

Blue51 You are right, no one "gets" this! It is a silent snake slithering through all the nerves in our brain and spine, and people don't get that when the nervous system is jumbled up like telephone wires all tangled up, the communication from our brains just doesn't work to tell our bodies to perform properly. Hence, the pain and fatigue and roller coaster emotions and cognitive fatigue and failure. All my lesions are in my brain, and that is affects my emotions and speech. I say angry words and breakdown and cry like I have never in my life, and my family tells me to "chill out." Sometimes I just scream and say don't you think I would chill out if I could? Do you think I like being this way? And then later I apologize, and they say I must learn to deal with my problems.!!! Nope, they don't understand I cannot unscramble the dead and live nerves that are in brain and miscommunicating!!!

[Blue51 in reply to agapepilgrim]

You did a great job explaining what having MS is like! I have one lesion on my brain and am not sure if that might be responsible for some behavior I have not been very proud of. My one son and his wife get it and so does my boyfriend, or would it be man friend?, and a close friend, but my sister and the rest kind of tip toe around me and never ask what the heck might be going on! Have tried to explain, but right now I don't want to talk to any of them about it. I live alone and right now that might be a good thing.