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!
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
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))
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.
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
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
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!
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