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    #16
    pb909, thanks for your reply and info.

    The study is to compare effectiveness of the 3 new oral meds, includes monthly 3D MRIs, and monthly monitoring of blood work and MS neuro office visits.

    I assume it's a relatively small study compared to others. It's being conducted at Providence MS Center and Harvard MS Center. The center directors at these 2 institutions presented nearly identical proposals for their 'dream' study. I think the proposals were presented to Aubagio pharma.

    It's posted on the Tec, Gelynia? and Aubagio threads.

    Comment


      #17
      I've been waking in the morning with a headache. This is new and coinsides with start of Aubagio If it continues,will speak to nurse practitioner.

      My urine smells differently

      Waiting to identify anything else
      [I]Tellnhelen
      Progressive Relapsing MS

      Comment


        #18
        side effect

        I don't know if this is considered "breathing difficulties" but I am very "congested" and am having a hard time breathing through my nose - there's no mucus just a dried up feeling.

        Also one of my legs got a severe painful cramp/stiff feeling in the middle of the night. I couldn't move it out of the position it was "frozen" in. I tried massaging it for a long while and it finally got better. I did not experience either one of these things before taking Aubagio so I'm blaming that. But I'll see how it goes.

        does anyone else experience those?

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          #19
          I'm on day 18 and haven't experienced any "bad" side effects. My stools are softer but not frequent. No headache as of yet but, I take it at bedtime just like I did the Avonex so, I may be sleeping through them.

          Comment


            #20
            About to Start Aubagio..Need Yur Advice.

            Am from Saudi Arabia and a sufferer of MS. My concern is knowing what precautions i should take before taking the medicine, Aubagio, which am to start soon.

            I have been suffering from MS for quite a long period of time,since 2007 and as yu all know the pain that we undergo with Ms, its very stressfull.

            The last medication that i used was 'Gelina', and did not give gud results on my symptoms, instead the symptoms just increased.

            Please share with me your experiences on the medicine and what i should know.



            Kindly assit.Thank you guys.

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              #21
              Worst possible side effect

              I was on Aubagio 14 mg for 4 weeks. 2 weeks off due to stomach pain. Everything checked out ok. Then 3 weeks of 7 mg. I stopped Aubagio 2 .5 months ago due to breathing issues. This began small but concerning. 2 hospital admits, 3 ER visits, and finally a wonderful pulmonary doctor. I now have pulmonary fibrosis. Aubagio websites call this interstitial lung disease. I did not have lung issues prior to Aubagio. This isn't good. My MS specialist - neurologist, didn't recognize this, help me or encourage the wash out drug. He told me multiple times that this couldn't be Aubagio related and to wait 'a little longer' to use the wash out drug. I am angry at myself for not listening to myself and at him for not seeing it and the danger. My husband and I tried on so many levels to get help. This could have been stopped earlier.
              I highly recommend demanding a CT (not an X-ray) if you feel any shortness of breath or cough that won't go away.

              Comment


                #22
                Carole,

                Thank you for taking the time to share this with us. I will be starting Aubagio soon, and will take your info with me (keep it tucked in my brain)
                Peace to all,
                LM
                RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

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                  #23
                  Me too- I will keep this in mind as I start Aubugio in Feb 2016

                  Comment


                    #24
                    Any one have these side effects??

                    I have been on Aubagio for 16 days. I have had tingling in arms and legs, which says"this might be a side effect not related to MS side effects". Ok….so I had a relapse in Feb. which caused my left arm and hand to go completely numb. After taking IV steroids and Acthar……little relief. I am now having tingling in my legs and both arms. Is this a relapse or just a side effect? Do the Aubagio side effects go away eventually?

                    Comment


                      #25
                      aubagio side effects for me...

                      Hi,
                      I had an MRI a week ago, and I go to my neuro tomorrow to see if I will
                      continue with Aubagio.

                      I did not have breathing issues, but had diarrhea around week 4-ish that lasted
                      a couple of weeks.
                      I don't know if this is due to Aubagio, or if it's just an MS thing, but I have jerky,
                      twitchy fingers now. Not all the time, but enough to piss you off when typing :/

                      Also, the hair loss I had VERY thick hair, and dye my hair with manic panic on
                      a regular basis (semi permanent vegan dye-no chemicals or bleach or anything).
                      If you saw me on the street, you wouldn't notice the hair loss, but if you know me,
                      you can totally tell. It's stopped now, but I hit the 6 month mark on March 26th.
                      It started about mid-month 4, and lasted a good month.
                      Dying my hair was the most traumatizing. I had the gloves on and was making sure
                      I had all the hair saturated, and I had to call my husband to the bathroom. I had huge
                      clumps of pink hair in my hands

                      But I AM feeling pretty good. I walk around okay-ish with my cane. I have had a
                      couple pass out episodes, but my doctor thinks that is due to low blood pressure.
                      Can Aubagio effect blood pressure?
                      Also, not sure if it's an aubagio thing, but has never happened before taking it.
                      I have cracked skin on my finger tips. Like BAD. It looks like I work construction
                      or something physical with my hands. The tips are so dry and split that they
                      bleed and HURT. I've tried every type of lotion and ointment...and it just moves
                      from one finger tip to the next. Literally like open wounds on my hands.
                      It seems too weird to be a side effect, but what else could it be?
                      It's NEVER happened before...

                      I guess it could always be worse, and I'll find out tomorrow if it's been worth it!
                      Dx 11/09
                      Aubagio since 09/15

                      Comment


                        #26
                        Hi Ivy Sprite,
                        I've been taking Aubagio for 16 months, had the diarhhea (super mild), also minor hair loss, all around the same time frame as yours. No blood pressure issues (mine has always been on the low side of normal, no changes).

                        As for your cracking fingers. I've had that happen to me every winter since forever. I sometimes look like I've been playing pat-a-cake with Edward Scissorhands. super ouch!! Lotions & ointments & creams are only a temporary help, if that.

                        The only thing that truly helps is water. Drinking lots of water. Juice is too sugary, and stuff with caffeine doesn't help, it'll make it worse, as it can have a diuretic effect.

                        I've been battling the split finger issue for years, so I know it's not the Aubagio causing it for me.

                        Good luck. I hope your fingers do better. Mine always heal well & completely in the spring & are fine all summer & fall. It's a winter curse for me.
                        "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

                        Comment


                          #27
                          Very bad side effects

                          Hi, I had been on Aubagio for 13 weeks. Every week after the 4th week my side effects kept getting worse. I had headaches almost to the extreme of a migraine. I had muscle/joint pains from head to toe. My neuro kept telling me to give it a chance. By the beginning of the 4th month I couldn't take it any longer. I talked to pharm at GenZyme and was told to stop taking aubagio. Had to literally fight with neuro to get off pill.

                          Now I've been off for 4 weeks, the side effects are getting better, but now I believe my ms has thrown me into a relapse. Neuro won't acknowledge it. I don't know what to do. I know I need a new neuro, but know who to trust. Thinking of going to er with these new symptoms and go from there.

                          Help?!
                          teddivr

                          Comment


                            #28
                            Hey, deeherman,
                            Sorry for the delay in responding (life was in the way), have you gotten any help with your symptoms/relapse/whatever the crap is giving you grief?
                            What about finding a neuro that listens?
                            There are a lot of choices in DMTs now, and not everyone reacts the same to each one. There are inert ingredients, binders, etc. that may cause grief for people too. Keep pushing for what's right for YOU.

                            Hugs pal.

                            T
                            "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

                            Comment


                              #29
                              Update

                              Originally posted by Carole7 View Post
                              I was on Aubagio 14 mg for 4 weeks. 2 weeks off due to stomach pain. Everything checked out ok. Then 3 weeks of 7 mg. I stopped Aubagio 2 .5 months ago due to breathing issues. This began small but concerning. 2 hospital admits, 3 ER visits, and finally a wonderful pulmonary doctor. I now have pulmonary fibrosis. Aubagio websites call this interstitial lung disease. I did not have lung issues prior to Aubagio. This isn't good. My MS specialist - neurologist, didn't recognize this, help me or encourage the wash out drug. He told me multiple times that this couldn't be Aubagio related and to wait 'a little longer' to use the wash out drug. I am angry at myself for not listening to myself and at him for not seeing it and the danger. My husband and I tried on so many levels to get help. This could have been stopped earlier.
                              I highly recommend demanding a CT (not an X-ray) if you feel any shortness of breath or cough that won't go away.
                              I wanted to give you an update. It's been 10 months since my Aubagio reaction. I am now close to where I was physically. The diagnosis was Interstitial Lung disease caused by Aubagio (Hypersensitivity Pneumonitis). My pulmonary doctor treated it aggressively. Last CT showed lungs were 95% normal. MS is worse but I can breath!
                              I reported this issue to Aubagio, and filled out multiple papers. Interestingly I got a phone call from Aubagio concerning my posts on msworld! They wanted to know if I was the same "Carole"! I used my real name as my screen name. I think that it's great that this company is actively looking for adverse reactions to their drug.

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