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Does anyone have shortness of breath?

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    Does anyone have shortness of breath?

    Hi guys,

    Month 5 Aubagio and I've had sudden onset shortness of breath, at rest and on activity.

    The company notes it as a serious side effect.

    My neurologist is being very blasé. GP is going through a range of tests, which will at least discount other factors.

    Have any of you had SOB or breathing difficulties since being in Aubagio? When did it manifest? And how did it affect you?

    Did going off Aubagio and flushing, fix the problem?
    Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

    #2
    I guess no one has had shortness of breath with this. We've been doing pulmonary tests and am still waiting for MRI (it takes weeks to get one here ) ... And I've been taken off Aubagio for the moment, but haven't had it washed out of my system.
    Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

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      #3
      I have not - read this when you posted but didn't reply, but now you have one!!

      Hope you are doing ok.

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        #4
        Thanks. Haven't been OK.
        Major relapse on Aubagio.

        Last day of 4 days methylpred infusions three days ago (fri)
        Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

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          #5
          Me too

          How are you doing now? Your post was 2 years ago.
          I am in the midst of this now. Pulmonary fibrosis due to Aubagio.

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            #6
            Bumping this thread...moved from 7mg to 14mg last November - had some shortness of breath to start and it calmed down, until recently. Started spacing out doses (every other day). Labs look normal, some low iron, but nothing out of ordinary. Explained it to neurologist and she wanted me to stay at 14 mg since my MS has been active. She did also leave the 7mg order just in case the 14 mg was too much of a problem..pretty sure breathing is important (hah).

            As far as lesions go, latest MRI shows I have a good number of tiny lesions, but still the same.

            Has anyone had this problem?
            “You don't love someone for their looks, or their clothes, or for their fancy car but because they sing a song only you can hear.”
            ― Oscar Wilde

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              #7
              UGH, sorry you're having a rough time.
              I've been on Aubagio 14mg just a bit over two years. No breathing problems for me, I hope yours resolve quickly, cuz yeah, ya gotta breathe.
              "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
              Verin Mathwin, The Wheel of Time by Robert Jordan

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                #8
                Yes. I did.

                Get a CT of your lungs. Insist on it! I was on Aubagio for a total of 8 weeks. The last 4 was 7mg. I was short of breath, dizzy, coughing,etc. I went to the ER three times. Admitted twice. It wasn't until the last ER that they did a CT. A chest x-ray didn't show it. The CT showed the appearance of "ground glass". I saw a pulmonary specialist. Had a bronchoscopy. It was Hypersensitivity Pneumonitis, basically a reaction to Aubagio. It was serious. I was put on high dose steroids and anti fungal antibiotics. I was very sick.
                Now, a year later, I can breathe again. My lungs are 90% of pre-Aubagio. I did not get my energy back (even though it was low to start with).
                Aubagio has helped a lot of people with ms, however, there is a reason adverse side effects are listed. If you are one of the few who develope any respiratory issues, insist on a CT. Don't wait. If you need my Dr's name let me know.


                Originally posted by pinkimartini View Post
                Bumping this thread...moved from 7mg to 14mg last November - had some shortness of breath to start and it calmed down, until recently. Started spacing out doses (every other day). Labs look normal, some low iron, but nothing out of ordinary. Explained it to neurologist and she wanted me to stay at 14 mg since my MS has been active. She did also leave the 7mg order just in case the 14 mg was too much of a problem..pretty sure breathing is important (hah).

                As far as lesions go, latest MRI shows I have a good number of tiny lesions, but still the same.

                Has anyone had this problem?

                Comment

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