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    Unusual Aubagio Side Effect

    I wanted to pass this on for whatever it's worth: I have just found out that one of my "symptoms" is actually more than likely a rare side effect of Aubagio. I have been taking Aubagio for almost a year and a half, with the only side effects being low WBCs and pretty significant hair loss (which stopped after a few months, but my hair won't grow back now).

    Over the past few months, I've noticed a new kind of neuropathy in my hands and feet. Completely symmetrical. I told my doc, who of course said that doesn't sound like it's from your MS. So he did a bunch of blood work looking for other things that could be causing it. Nothing showed.

    Then one day while the Aubagio rep was in his office, he decided to ask if peripheral neuropathy could be a side effect. The rep had my doc call the Aubagio Medical Director to discuss. Turns out, there have been 30 reported cases of this kind of neuropathy with Aubagio.

    Anyone out there one of the 30??? I'd love to know if the annoying/painful sensations go away once you stop taking the drug. Looks like I will be switching to Copaxone soon - but first doc is sending me to MS Specialist who apparently sees 3 of the 30 patients in a town 1.5 hrs away - just to confirm. Ugh.

    ** 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. **
    JilliO

    #2
    Me Too

    I have been on Aubagio for over 3 years now. I too lost hair and it isn't growing back. As for the peripheral neuropathy I have tingling in my hands and feet and burning feet and just thought it was the MS. I didn't have this at all before taking Aubagio.

    I haven't had any flares since taking Aubagio so I guess I will put up with these side effects.

    Comment


      #3
      I was on Aubagio for 6 months and stopped because I had peripheral neropathy in both legs. I thought I read peripheral neropathy was a side effect on the aubagio website, otherwise I wouldn't have known, my neuro sure didn't.

      I also lost a ton of hair, but it has since grown back.

      Comment


        #4
        Thank you guys for responding! I think it must be an underreported side effect. And it's tough because tingling and numbness in your hands and feet can so often be caused from MS. In my case, it was the symmetry that bothered my doc enough to look into it.
        Loopey - I forgot to say that doc also found new c-spine damage on MRI so that's another reason we are changing meds. Also, my numbness is progressing fairly quickly and it is affecting my balance.
        Schmangi - did the neuropathy get better once you stopped taking it? And what did you switch to?
        JilliO

        Comment


          #5
          Mine wasn't painful - I just couldn't feel my feet up to my knees. Like you, it was the symmetry that made me question the drug. I think I still have some loss of sensation to a degree but I have other issues with my legs and spasticity now so it's hard to tell what's what. I stopped DMDs for about 18 months and just recently started Tysabri. I couldn't tolerate copaxone, I was on it for years before Aubagio and started getting really bad infusion site reactions, I gave it a go once more after the Aubagio fiasco, but nope. Everyone has a different tolerance/reaction to these drugs - good luck!

          Comment


            #6
            Originally posted by JilliO View Post
            In my case, it was the symmetry that bothered my doc enough to look into it.
            That was a good call by your doc, JilliO. Symmetry is a clue that symptoms might not be caused by MS, and too many patients and doctors don't pick up on it.

            Peripheral neuropathy from Aubagio may be rare percentage-wise, but in numbers it has occurred often enough that it has been added to the warnings section of Aubagio's prescribing information.

            This is section 5.5 of the prescribing information:

            In placebo-controlled studies, peripheral neuropathy, including both polyneuropathy and mononeuropathy (e.g., carpal tunnel syndrome), occurred more frequently in patients taking AUBAGIO than in patients taking placebo. The incidence of peripheral neuropathy confirmed by nerve conduction studies was 1.4% (13 patients) and 1.9% (17 patients) of patients receiving 7 mg and 14 mg of AUBAGIO, respectively, compared with 0.4% receiving placebo (4 patients). Treatment was discontinued in 0.7% (8 patients) with confirmed peripheral neuropathy (3 patients receiving AUBAGIO 7 mg and 5 patients receiving AUBAGIO 14 mg). Five of them recovered following treatment discontinuation. Not all cases of peripheral neuropathy resolved with continued treatment. Peripheral neuropathy also occurred in patients receiving leflunomide.

            Age older than 60 years, concomitant neurotoxic medications, and diabetes may increase
            the risk for peripheral neuropathy. If a patient taking AUBAGIO develops symptoms consistent with peripheral neuropathy, such as bilateral numbness or tingling of hands or feet, consider discontinuing AUBAGIO therapy and performing an accelerated elimination procedure.

            That's just the statistics from a study. It sounds like after-market experience is showing that the actual number of patients experiencing peripheral neuropathy is increasing with the number of patients taking Aubagio.

            Comment


              #7
              Wow, thanks JReagan70. That is really useful information - and I had not come across it before! I'm not sure why I didn't think to look at the prescribing information... whoops!
              In any case, it's very interesting. My doc has since taken me off the Aubagio but did not suggest the accelerated elimination. I have an appointment with a specialist at Washington University in late July to discuss other treatment options, so maybe at that point they'll want me to do the wash-out thing. We'll see.
              Anyway, thank you again
              for the information! Very helpful.
              JilliO

              Comment


                #8
                I also had neuropathy

                Just after beginning Aubagio.
                My symptoms were similar to carpal tunnel but I had numbness & tingling on both sides. I've had no symptoms since stopping the med. I reported it to the Aubagio people, my MD didn't seem to care.
                Tl-Tr3
                DX'07 MS- on Tysabri-

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