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    Bad reaction to Aubagio

    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. **
    Rule of Feline Frustration: When your cat has fallen asleep on your lap and looks utterly content and adorable, you will suddenly have to go to the bathroom.

    #2
    Aubagio

    What is your original treatment?
    You don't stop laughing because you grow old....you grow old because you stop laughing!

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      #3
      Thanks for sharing your experience. I think it shows how neurologists aren't really used to prescribing medicines that alter the immune system and a lot of them don't really have enough experience with them to know what they're doing. I think it took neurologists many years just to get up to speed with even the CRAB drugs. I started on Avonex in 2001 and even tho it had been available for 5 years my neuro didn't really know much about it then. When my kidney tests started coming back abnormal she just kept telling me I was dehydrated. (I changed neuros after that!) And I think even now a lot of neuros don't even know how to use steroids the right way.

      With the newer medicines that are immunosuppressants I think a lot of neuros are in waaay over their heads. The neuro I don't see anymore was kind of arrogant and never asked any other doctors for advice. Other doctors I've seen since then have consulted with oncologists when they wanted to use chemo drugs and consulted with rheumatologists when they wanted to use immunosuppressant drugs. It sounds like your neuro is one of the ones who is in over her head on some of these new DMDs. I think if she was really up to speed on Aubagio she would have jumped on your skin reaction right away.

      I'm glad that you were paying attention and went back to the doctor when you knew you were having trouble with side effects. I think your experience will help a lot of people. And I'm sure your neuro learned a few things too! I'm glad your OK now.

      Comment


        #4
        Aubagio: medication used to flush Aubagio from system

        Hello,
        After reading swpanther1's thread on a bad reaction to Aubagio, my question to swpanther1 would be: What was the Rx prescribed to you used to flush Aubagio from your system? I have had some trouble tracking down this flushing medication.

        My wife has been on Augabio for three months now. We have become convinced the pain she had pre-Aubagio was not as severe as it is now. After discussing this potential problem with her neuro, the neuro flippantly said "Aubagio doesn't contribute to pain level increase". With a little detective work via the internet my wife uncovered an academic article (see bold blue link below) stating that in fact Aubagio can and does in some cases contribute to increased pain levels:
        httphttp://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7722

        Comment


          #5
          Originally posted by TXwifehasMS View Post
          My wife has been on Augabio for three months now. We have become convinced the pain she had pre-Aubagio was not as severe as it is now. After discussing this potential problem with her neuro, the neuro flippantly said "Aubagio doesn't contribute to pain level increase". With a little detective work via the internet my wife uncovered an academic article
          The NMSS article isn't an academic article but the NMSS is a reliable source.

          In the NMSS article do you mean the part that says, "The most common adverse events reported in the Aubagio groups were liver enzyme elevations, nasal inflammation, headache, hair thinning, diarrhea and paresthesia (e.g., burning sensations, pins and needles, stabbing pains)."?

          That might not mean what you think it means. It doesn't mean that absolutely Aubagio causes an increase in pain. If you look at the study information from the prescribing information you'll see that people who were taking the placebo also reported the same side effects. The Aubagio group had only 1 to 2% more people reporting paraesthesias and pain than the placebo group. That's maybe 3 or 4 more people. so it isn't a smoking gun of proof. And since pain and paraesthsias are common in MS anyway it might not be completely certain that the increase is from the Aubagio.

          But your right that the study shows that it can increase pain levels so if your wife wants to stop Aubagio then she can just stop it and ask for the rapid removal treatment. The removal treatment is described in the Aubagio prescribing information in section 5.3 called Procedure for Accelerated Elimination of Teriflunamide. The prescribing information is on the big piece of paper that should have come with the Aubagio from the pharmacy. If you didn't get that you can see the prescribing information online at the Aubagio website.

          Comment


            #6
            Sounds like you might have had a case of Stevens Johnson syndrome. Look it up, some folks have a mild case, others can have a severe reaction.

            It can happen with almost any meds, and they do often hospitalize the patient. My docs, GP especially, always tell me to immediately report any blisters if it seems like I'm having a reaction to a med. I do have a problem with multiple drug allergies, so they want me informed.

            Glad you're doing better.

            Comment


              #7
              TXwife: The 'flushing' treatment was Cholesyramine 4GM packets (66 count in box, for oral suspension USP powder)...had to use 2 packets in 8-12 ox of water or juice every day for 8 hours, for 11 days. You need to drink plenty of water while taking the med; it can cause constipation otherwise. I found that drinking it with grape juice was the easiest, followed by a big glass of water. It thickens in liquid, almost like taking one of those fiber mixes with juice, it's gritty. You usually take one packet in juice, but for the flushing, it had to be 2 packets each time.

              The other treatment for flushing is liquid charcoal which can cause diarrhea....luckily I did not have to do that.....but the powder treatment did not work fast, so my doc had to put me on prednisone for a week....that stopped the 'burns' from spreading, within 2 days. Looking back, it had to be the Steven-Johnson syndrome, and a bad case at that.

              The regimen I had previously been on (and returned to after the Aubagio) is Rebif....I've been on Rebif since 2001. When I was first diagnosed in 2000, my doc had me on Avonex.....but took me off after a year and put me on Rebif.

              I wish everyone good luck, I'm sure the Aubagio does work for some....but when I let the FDA know what happened, they did indicate there has been no study on long-term use of the med, which was pretty concerning. Not to mention that (unless you do the flushing) it can take 8 months to 2 years to leave your system....my primary said she had never heard of that....scary.

              I do not like taking shots and have skin issues from doing them so long, but after what I went through, I was glad to resume them.

              Blessings and best wishes to all.
              Rule of Feline Frustration: When your cat has fallen asleep on your lap and looks utterly content and adorable, you will suddenly have to go to the bathroom.

              Comment


                #8
                Wanted to mention: when the 'burns' stopped spreading (at the end they were all over my chest, neck, stomach, privates, back, arms, beginning to go down my legs--but not on my face, thank God!)--on 2nd day of prednisone when they stopped and began to fade -- I have no scarring of any of the 'burns'....

                I had to soak in a cool tub with an oatmeal soak (it was Aveno soak for babies) and used Aveno lotion (unscented).....that helped when the blisters 'broke'. There was no itching with the Aveno.

                Just wanted to mention that. Oh, and I will not try any new treatments until they have been out and used by others for at least 2 years. All best.
                Rule of Feline Frustration: When your cat has fallen asleep on your lap and looks utterly content and adorable, you will suddenly have to go to the bathroom.

                Comment


                  #9
                  Originally posted by swpanther1 View Post
                  Wanted to mention: when the 'burns' stopped spreading (at the end they were all over my chest, neck, stomach, privates, back, arms, beginning to go down my legs--but not on my face, thank God!)--on 2nd day of prednisone when they stopped and began to fade -- I have no scarring of any of the 'burns'....

                  I had to soak in a cool tub with an oatmeal soak (it was Aveno soak for babies) and used Aveno lotion (unscented).....that helped when the blisters 'broke'. There was no itching with the Aveno.

                  Just wanted to mention that. Oh, and I will not try any new treatments until they have been out and used by others for at least 2 years. All best.
                  After I mentioned the Stevens Johnson to you, I went to google and checked side effects for Aubagio...sure enough, in rare cases it can cause Stevens Johnson.Of course all of this is Monday morning quarterbacking...as no one diagnosed you with it.

                  There is no treatment as such, but they put you in the hospital to use supportive care, fluids, etc., and also antibiotics if the blisters get infected (I think they keep you in isolation.)

                  As far as steroids...I thought that was a no no with SJ, but I looked up a couple articles and it just seems like it's still up for debate. Here's a link to an article that talks about a debate over steroids as treatment for SJS:

                  http://dermatology.cdlib.org/DOJvol8.../ghislain.html

                  I've had a lot of allergic reactions to meds, and my GP has drilled into my head about heading to the ER if blisters form...that's why when you mentioned blisters...it reminded me of what he tells me.

                  Glad you're on the road to recovery. And now you'll know what to look for in the future if you should ever have another allergic reaction...it is rare, but something we need to be aware of.

                  Comment


                    #10
                    rdmc: thank you for the link to the article about SJ....I am so very lucky in the outcome (and that I had only taken 7 pills of the Aubagio); but a bit irritated (to say the least) at my neuro for not handling it very promptly at the beginning. lessons learned, for sure--and I know now to be very careful and do loads of research prior to 'approved' meds.
                    Rule of Feline Frustration: When your cat has fallen asleep on your lap and looks utterly content and adorable, you will suddenly have to go to the bathroom.

                    Comment

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