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    My Aubagio observations

    Hi, I'm new to MS Worls, and joined up after seeking people's experiences with Aubagio.

    Was diagnosed CIS MS in 2007 during a vicious exacerbation. 13 lesions on spine, none in brain. No optic neuritis or hand/arm issues. Just my legs. Relapse 2 in 2008. Was put on Copaxone in August 2008.

    I have had a further two known relapses since then, in mid 2010 (treated with intravenous MethylPrednisolone) and just recently, February 2013 (treated with oral prednisone tapered). The recent relapse was much less severe than the 2010 one, or the others preceding it.

    Unfortunately I have had swelling and hive site reactions with the Copaxone and now quite noticeable skin dipping, despite site rotation. Constant heart palpitations that I learned to live with. It's taken the docs a year to come up with an alternative as I tested positive for the JCV virus, was not a Gilenya candidate due to my propensity for heart palpitations, and did not want to take other injection DMDs.

    The liver issues concerned me, as I was hospitalised for a number of weeks in 2008 with a amebic liver abscess caused by the dreadful entamoeba histolytica (picked up in Indonesia). So while not MS related, it was an important factor. However, all liver functions have been very good since that time, so I have decided to give Aubagio a good go.

    Definitely do not like the possibility of thinning hair, but will have to wait and see.

    Started last Friday March 1, 2013.

    I am taking the 14mg tablet at night right before I go to bed, to see if that will help me "sleep it off" as someone else in this forum so aptly put!

    So far, three tabs taken, today is the start of Day 4.

    No nausea.
    No diarrhoea.
    No headaches or aches and pains at all.
    Felt very "off" and slow yesterday, but I can't necessarily attribute that to Aubagio. Most likely just MS and life!

    I thought I'd document this here to start participating in the community, and to keep tabs on side effects.
    Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

    #2
    Please keep giving updates. I had a breaidown at my nuero last week, I've been on all meds except aubagio and gilenia. I'm jc positive, so after 6 months I thought I had get off of Tysabri. She perscribe me Aubagio. But I don't think a whole lot of people are on it so it makes me nerious. Let me know how you're doing.

    Comment


      #3
      I appreciate everyone sharing their experiences. I spoke with the one on one nurse who told me they are awaiting per authorization. They already new my copay and said that if approved for their assistance program my copay would be 30 dollars instead of 75 and I may have no copay the first c3 months. So we will wait and see. They received everything from my doctors office on feb 18 and most people say it takes a month. So I will see.

      Comment


        #4
        Month 2 started

        Well the first month on Aubagio has been pretty uneventful. Haven't gone to do my bloods yet. Must do that this week. Fingers crossed liver is doing OK.

        Mild side effects:

        General mild nausea intermittently, not every day. I don't generally get nausea, so I attribute this to the Aubagio, as it's a listed side effect.

        One day two weeks ago (Week 2) of diahorrhea bad enough to keep me home from work. One day only. Out of the blue. Was it Aubagio? Really not sure. That's also supposedly a common side effect, but it hasn't returned, so I can't say.

        Difference from Week 3:

        I wake up creaky and achy most mornings. I went through a "lupus scare" a year ago but didn't fit enough criteria for a diagnosis. Well lo,and behold, no aches and pains at all in the mornings now. Aubagio? It's the only thing that's different. It IS anti inflammatory, so at this point I'm attributing this to the drug.

        Good news:

        Aubagio is not get on the Pharmaceutical Benefits Scheme in Australia, so the manufacturer is providing it for free. No copayment at all if I pick it up from my neuro. I have to pay the Medicare copayment if I pick it up from the hospital pharmacy. Go figure. So, neuro it is.

        If JC positive:

        jnet1589, I am JC positive as well. Gilenya not the flavour of the month here, due to too many cardiac issues being suffered by people. Was on Copaxone for 4 1/2 years, but it's wrecking my body with skin dipping, despite site rotation.

        Really want this stuff to do what it's supposed to do!
        Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

        Comment


          #5
          Good luck Laurasari! Any news yet?
          Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

          Comment


            #6
            Thanks Michael.
            Yes I started last week I seem to be experiencing terrible headaches made worse by bending over hoping will soon pass.
            Laurie

            Comment


              #7
              Aubagio

              Hello, I have posted a few times here about my Wife's experience with MS med's. She has been on Avonex, Betasarron and Tysabri & being JVC positive (probably misspelled them all) now she is on Aubagio and has gone from not being able to get out of bed a month and a half ago to now being able to stay up most of the time, and feel like a human again, she sometimes has to lay back down or get in the recliner. But of course she doesn't do much but she is able to function for herself. We have actually been able to get out of the house and go out to eat a couple of time. She has started having bad headache's the last few days, and says her hair is starting to thin some, but I can't tell it. I don't know how this will work out but she is doing better (So Far) than she has done on all the other med's. And the med's cost her NOTHING, I have been disabled for over 20 yrs. the Doc's office filled out most all of the paper work for us, I had to send in a copy of our SS papers and only took about month to get her started on the Med's.
              We only hope and pray that this will work, but with MS you never know.
              Woody

              Comment


                #8
                Originally posted by KO4BG View Post
                Hello, I have posted a few times here about my Wife's experience with MS med's. She has been on Avonex, Betasarron and Tysabri & being JVC positive (probably misspelled them all) now she is on Aubagio and has gone from not being able to get out of bed a month and a half ago to now being able to stay up most of the time, and feel like a human again, she sometimes has to lay back down or get in the recliner. But of course she doesn't do much but she is able to function for herself.

                We have actually been able to get out of the house and go out to eat a couple of time. She has started having bad headache's the last few days, and says her hair is starting to thin some, but I can't tell it. I don't know how this will work out but she is doing better (So Far) than she has done on all the other med's. And the med's cost her NOTHING, I have been disabled for over 20 yrs. the Doc's office filled out most all of the paper work for us, I had to send in a copy of our SS papers and only took about month to get her started on the Med's.
                We only hope and pray that this will work, but with MS you never know.
                Woody
                Woody, how fantastic is that! You must both be very very pleased with that. I wish you the best with Aubagio and hello to your wife from me Would love to hear how she's going.
                Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

                Comment


                  #9
                  Aubagio - Month 1 blood test results

                  Generally all is not too bad, but there may be a pattern with kidney function.

                  Liver - all fine

                  White cells/monocytes - slightly up. No biggie.

                  Red cell parameters - MCHC above normal, but it was the month before, and not hugely abnormal.

                  Red cell parameters - RDW is up, and abnormal.

                  Kidney function ... GFR is markedly down but within normal range

                  Creatine - markedly up, but within normal range.

                  A side effect of Aubagio is sudden acute kidney failure.

                  I won't freak out about this.

                  If next month's bloods continue the trend, I will be pounding on the MS Clinic's door!
                  Diagnosed 11/2007, Copaxone 8/2008 - 2/2013, Aubagio 3/2013 - 11/2013

                  Comment


                    #10
                    Thank you Woody for posting your wife's condition and how she is doing. You're the first one that I've read with positive results. I needed to hear that!

                    Comment


                      #11
                      jnet, I've posted elsewhere that I've been on it for 3 months and while I've had a bit of gastric upset, all of my bloodwork has been fine.

                      Comment


                        #12
                        I am finishing my second month on Aubagio and have had no side effects. My blood work has been normal, my hair isn't thinning and though I have been a little queasy some days, I am not sure it is the medicine.

                        Comment


                          #13
                          Originally posted by Michela11 View Post
                          Hi, I'm new to MS Worls, and joined up after seeking people's experiences with Aubagio.

                          Was diagnosed CIS MS in 2007 during a vicious exacerbation. 13 lesions on spine, none in brain. No optic neuritis or hand/arm issues. Just my legs. Relapse 2 in 2008. Was put on Copaxone in August 2008.

                          I have had a further two known relapses since then, in mid 2010 (treated with intravenous MethylPrednisolone) and just recently, February 2013 (treated with oral prednisone tapered). The recent relapse was much less severe than the 2010 one, or the others preceding it.

                          Unfortunately I have had swelling and hive site reactions with the Copaxone and now quite noticeable skin dipping, despite site rotation. Constant heart palpitations that I learned to live with. It's taken the docs a year to come up with an alternative as I tested positive for the JCV virus, was not a Gilenya candidate due to my propensity for heart palpitations, and did not want to take other injection DMDs.

                          The liver issues concerned me, as I was hospitalised for a number of weeks in 2008 with a amebic liver abscess caused by the dreadful entamoeba histolytica (picked up in Indonesia). So while not MS related, it was an important factor. However, all liver functions have been very good since that time, so I have decided to give Aubagio a good go.

                          Definitely do not like the possibility of thinning hair, but will have to wait and see.

                          Started last Friday March 1, 2013.

                          I am taking the 14mg tablet at night right before I go to bed, to see if that will help me "sleep it off" as someone else in this forum so aptly put!

                          So far, three tabs taken, today is the start of Day 4.

                          No nausea.
                          No diarrhoea.
                          No headaches or aches and pains at all.
                          Felt very "off" and slow yesterday, but I can't necessarily attribute that to Aubagio. Most likely just MS and life!

                          I thought I'd document this here to start participating in the community, and to keep tabs on side effects.
                          I just started taking Aubagio tonight. I too am not looking forward to the whole hair thinning either.
                          channysbakery

                          Comment


                            #14
                            Well my neuro didn't think the headaches were related to the Aubagio. He suspected they were from a sinus infection that I don't think I have. He did suggest I stop the Aubagio.for a week to 10 days and let him know what happens. Stopped it fri and by tues no more headaches. He may consider the new drug but I will know more when I see him again on Tues. I hope everyone else has a better experience than I did. I will let yu all know what decision is made

                            Comment


                              #15
                              I'm on day 9 of the wash out process; I've been losing 3x the hair each day that I normally do and I'm beginning to feel a difference in my hair. This started at about 3 months on Aubagio. I have fine hair, and I'm hoping this loss starts soon. Ugh.

                              Comment

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