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1168718 tn?1464983535

Aubagio

Hi guys, I have a similar question as to ones that have been asked, but with a different drug.
I am Aubagio, and have been on it for nearly 2 months now.  I have had so many sideffects are quite bad.  Still waiting for the MS Clinic to call me back on if I should continue to take it.  That was 2 weeks ago.  !!   Hubby and I waited for 3 days, and thought, because of the bladder infection, I went back on Aubagio thinking it was the bladder trouble causing the temps. and flushing, and peeling skin .....

I have got some other symptons now, and it is lack of being able to have a movement!!!   I know, this is sensitive for some of us, my problem is lots of mucus again, and lots of gas, and little to no product.  I have had this years ago, and had a colonoscopy and had pollips removed.  Now, is this the drug, or my strange no "normal" behaviour.

Also, on a lighter side, how about the  pimples ???   My face is looking like I am a teenager.  It isn't horrible, but to me it is, and I have to us cover up and stuff like that.?  Has anyone else had this trouble ???

Cheers,
Candy
8 Responses
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Avatar universal
I have been on Aubagio for 7 months now- I had severe hair loss for a few months. My hair dresser was " freaking out" thank goodness I have the thickest hair ever. It was scary for a bit. I still have diarrhea on a daily basis but that is the only side affect. I was on injections for 11 years and am thrilled to be done with them and hoping I can stay on Aubagio as long as possible- Candy, I am so sorry you are having problems with the Dr and one to one nurses :/ very distressing! I hope you get results soon!
Helpful - 0
Avatar universal
Hi Candy! My neuro PA is trying to see if I'm a good candidate for Abagio because of my cancer. I'm still waiting to hear back. She also talked about Tecfidera but didn't want me to take Gilenya. My insurance requires me to try Rebif for at least a month before they can consider whether or not I can get Abagio - I've already been on Copaxone since 2010 & having bad reactions to it.
Are you still having problems on it - are you still taking it?
I hope you're doing good.
-Kelly
Helpful - 0
1168718 tn?1464983535
Hi guys, to answer some of your questions JJ - thanks for all you posted, I did call the MS CLINIC at the hospital, and to date, no return call.  Apparently, when I told the One to One nurse that I was stopping she said "SHE" would call the nurse at the Clinic ....... still no answer, or concern for my well being... :(

Karry - the steroids DID work for the itching on my neck and throat, and rash too, but, we finished the Predisone , and today I'm itching again, but so far the rash hasn't started up yet, so I just took some anithistamines.  

I am so discouraged with these Dr's and such, that I don't really even care anymore if I hear from them.  I guess eventually they will call, I do have my Shrink appt. on the 22nd of December.. ( that was a rush) apparently, ......so, does not really help my concerns now, so, we try to carry on and do one day at a time....

thank you all,
Gently hugs right back at you all,
Candy
((HUGS))
Helpful - 0
5887915 tn?1383378780
I'm so sorry to hear of your experience Candy. I can't believe that they haven't returned any of your calls either which is just plain rude as far as I'm concerned.

It will be interesting to see if the low dose steroids help your skin or not as if I remember correctly SLE / Lupus was discussed at one stage with you as well. Have the hospital said if they think the rash is from the Aubagio?

Gentle hugs coming your way,

Karry.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hey babe, I'm really sorry this has happened to you!

I went looking for other MSers talking about similar experiences, the hair loss seems to be the biggest complaint being talked about, some reposting with their regrowth stories months later though. From what i could find, hair loss topped the list of reasons during trail, to stop taking it. Gut issues stood out too, usually  diarrhoea and vomiting, with people advising dietary changes but not anything more substantial to solve the problem. Surprisingly I didn't really find anyone talking about skin reactions, even though it was listed as a side effect.  

I did find something noted on the National MS society, that you might like to consider.....

"Note: Aubagio remains in the blood for an average of eight months after a person stops taking the medication, but may remain in the blood for up to two years after the last dose. If necessary, for medical reasons or because a woman has become pregnant or a woman or man wishes to conceive a child, the medication can be eliminated from the body in 11 days with the use of cholestyramine or active charcoal"

http://www.nationalmssociety.org/Treating-MS/Medications/Aubagio

The standard of care you've received, apart from appearing to be confusingly neglectful, it just isn't good enough! You are obviously experiencing problematic and distressing side effects, whilst on a drug you've only recently started taking, the least they could do is return your calls.....

Have you contacted the clinic yet, to inform them you've chosen to stop taking Aubagio due to reasonable side effects? hmmm hate to say it but it might get their attention and an early appointment to discuss your situation.

Hugs...........JJ
  
Helpful - 0
1168718 tn?1464983535
Well, Hello again,
thank you guys for your information and input.  

I am sick about all of this, my hair is falling out, and I have the most itchy rash and hives on my throat and neck, and was actually at Emerg. the other night, and they put me on a 5 day low dose Predisone, and it really seemed to help.

Ya know though, I still have not heard from the MS Clinic, or my neuro ..... I feel like they have dropped me like a ball.  I'm sick about it, but what the heck can you do ?

My lab girls were thrilled I am off, and my pharmacist was happy too.  My hair was thick to begin with, thank goodness, it is fallling out so much, and I was only on this drug for 2 1/2 months.

I did call the special pharmacy and let them know not to send any more, and the nurse for the One to One program , was cold and unfeeling on the phone, did not try to talk me into anything, just sounded ticked that I was quitting, and she let me know it.

I have had such bad treatment since and before my dx ..... and there is no where else to go for help or any other Dr.'s either.  My shrink I can't even get into see until Dec 22, and I was in quite a bad way when I called for that.

So, any suggestions would be great if you have any.

Really disappointed and let down,
Candy
Helpful - 0
3079363 tn?1363273715
I have been taking Aubagio for almost two years now. I never had any of the symptoms that you've described. I had mild diarrhea and hair loss that went away after several months. I think you may have something else going on that is unrelated to Aubagio. Sorry your having such distressing symptoms and hope you find answers soon!
Helpful - 0
Avatar universal
Waiting for 2 weeks for a call back is unacceptable. Have you called the drug company? They typically have nurses on staff that answer questions for you. Good luck

Jennifer
Helpful - 0
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