Greetings: I just wanted to share my Aubagio experience that happened in February. I was so excited to begin the oral treatment, and am sad that the tx did not work for me.
Approximately 2 days after I began taking the tx, I noticed a small, red patch (appx 2 cm) on my lower right back. I contacted the MS clinic I go to, and after 8 hours the nurse returned my call. She said she consulted with one of the other neuros who was there, and he said it "was not" a reaction to the drug, and to continue tx. They said if any other skin reactions happened, to use an oatmeal soak, but to continue to tx and call in another week.
After 7 pills, I had little red bumps under the breasts and middle of my back. I could not get an appt on Friday, so I just showed up at the MS clinic -- and after showing a nurse my bumpts, the dr came in and looked. She confirmed it was a reaction, and that I should stop taking Aubagio immediately.
She said if the bumps did not go away, that I would have to do the 'flushing'. I don't know why she did not give me the rx for the flushing tx right then, but over the weekend, the bumps became inflamed, blistered, and continued to grow....luckily, they did not itch, but I was scared. There was no way to get ahold of any neuro at the Clinic as it was the weekend and they have no number for an on call dr.
By Monday morning, I was so frustrated and just showed up at the Clinic. After checking me over, the dr gave me the rx for the flushing power and I began that tx (2 packets of the power in juice, 3 x's per day for 11 days--ick). However, the spots/blisters kept spreading....after 8 days of the flushing tx, my dr finally had me take a dose of prednisone and after 3 days, the blisters finally stopped spreading.
They were all over my back, chest, privates, neck and legs. It took a total of appx 1 month for the blisters to heal and disappear. This was after taking only 7 pills.
A couple of weeks ago, I had an appt with my primary doc and showed her the pictures. She said those would actually be classified as a type of 'burns' and that I should have been in the hospital--thank God it did not spread to my face. My neuro should have really taken the time and told me everything that could be potential side effects. I did contact the FDA to file a report, which is stated on the flyer that came with my Aubagio packet.
I am glad it works for some people, but just thought I should share my experience. Am now back on my original tx, which is also harsh but at least I know what to expect.
God bless.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Approximately 2 days after I began taking the tx, I noticed a small, red patch (appx 2 cm) on my lower right back. I contacted the MS clinic I go to, and after 8 hours the nurse returned my call. She said she consulted with one of the other neuros who was there, and he said it "was not" a reaction to the drug, and to continue tx. They said if any other skin reactions happened, to use an oatmeal soak, but to continue to tx and call in another week.
After 7 pills, I had little red bumps under the breasts and middle of my back. I could not get an appt on Friday, so I just showed up at the MS clinic -- and after showing a nurse my bumpts, the dr came in and looked. She confirmed it was a reaction, and that I should stop taking Aubagio immediately.
She said if the bumps did not go away, that I would have to do the 'flushing'. I don't know why she did not give me the rx for the flushing tx right then, but over the weekend, the bumps became inflamed, blistered, and continued to grow....luckily, they did not itch, but I was scared. There was no way to get ahold of any neuro at the Clinic as it was the weekend and they have no number for an on call dr.
By Monday morning, I was so frustrated and just showed up at the Clinic. After checking me over, the dr gave me the rx for the flushing power and I began that tx (2 packets of the power in juice, 3 x's per day for 11 days--ick). However, the spots/blisters kept spreading....after 8 days of the flushing tx, my dr finally had me take a dose of prednisone and after 3 days, the blisters finally stopped spreading.
They were all over my back, chest, privates, neck and legs. It took a total of appx 1 month for the blisters to heal and disappear. This was after taking only 7 pills.
A couple of weeks ago, I had an appt with my primary doc and showed her the pictures. She said those would actually be classified as a type of 'burns' and that I should have been in the hospital--thank God it did not spread to my face. My neuro should have really taken the time and told me everything that could be potential side effects. I did contact the FDA to file a report, which is stated on the flyer that came with my Aubagio packet.
I am glad it works for some people, but just thought I should share my experience. Am now back on my original tx, which is also harsh but at least I know what to expect.
God bless.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Comment