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Aubagio -- my experiences

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    Aubagio -- my experiences

    I started Aubagio on 1/9, so today will be my sixth dose. I see lots of posts from people wondering about this new med and what it's like to take it, so I thought I'd give my thoughts now, and in the future, of people are interested. I'm on 14mg/day; there is a 7mg pack available as well.

    It took a full month to get the med, but that is mostly because it is new to the market. It should be as easy to obtain as any other MS med by this point. In order to start the med I needed a negative tuberculosis test, a negative blood pregnancy test (as well as highly effective birth control plans; even men on this med need to take precautions not to get a female partner pregnant, as the med is carried in the semen, and this is a pregnancy category X med), and a baseline liver/blood count check. Liver values will be checked monthly for the first 6 months.

    The pill comes in a blister pack in a cardboard envelope, itself inside another sleeve. Each pill has "Day 1," etc. next to it, and there is a place to write down the day you took the first pill of the pack so you can count back and see if you missed a pill. The pill itself is a very small light blue hexagon, easy to swallow.

    So far, I haven't noticed a single thing I can attribute to Aubagio. The most common side effects (still in 10% or less as compared to placebo) are nausea, diarrhea, mild hair loss, and liver issues. I'm on day 6, so can't speak to the future, but on Copaxone the nausea had begun by this point, so I'm hopeful I will avoid it with Aubagio. It's possible (TMI alert!) that I'm having looser stools the last couple of days, but again, nothing radically outside of normal, and not enough days yet to really make that call.

    So far, so good!


    #2
    I started 14mg on 1/6 so I'm running about the same timeline. Also took me a month to get the prescription.

    I was on Tysabri for 3 years with my last treatment late December. I'm also on Ampyra since 2009.

    I'm required to have my blood pressure monitored monthly in addition to the neg TB test and the baseline blood test and now monthly for 6 months.

    The One to One program sent a free 10 day supply to get me started while waiting for the first 28-day supply. They are also covering my first 3 months prescription. Their copay max is $35 a month if your insurance is more.

    No side effects at this point - and no changes good or bad.

    Comment


      #3
      pb, glad to hear you aren't having any side effects! Hopefully that continues.

      I'm on week 3 now, and am definitely noticing some gastric issues. I'm gassier, and have two or more bowel movements a day (as opposed to one). No diarrhea, just looser stool. (MS, you are so glamorous!) It's an acceptable change; it's not impacting my life in any noticeable way. It's just different.

      Within about 10 minutes of taking the pill I now get a very mild stomach upset that is reduced if I take the pill with food. I wouldn't even call it nausea, it's jut a mild icky feeling that lasts about an hour. It didn't happen the first week, but now is so regular I have to assume it's the med.

      And that's all the news that is fit to print.

      Comment


        #4
        Funny you should mention being "gassier" - I'm in week 3 and noticed this 3 days this week. No diarrhea either and it's acceptable for me too.

        I take my pill with dinner and have had no stomach issues.

        I hit day 28 / end of pack 1 tomorrow and will have my monthly blood test next week. I'm due to see my Neuro late Feb.

        Comment


          #5
          Yesterday was pill 27, and yesterday diarrhea hit. It's not as bad as it could be, and I'll keep an eye on hydration, etc., but its darn annoying. I called Aubagio, and the nurses were pretty useless. I wanted to know if this is likely to resolve itself, and in what timeframe, based on the trials. Not only did the nurse not know this, but neither did the pharmacist I was transferred to. The pharmacist told me that they would look into it further to see if the trial had notes about it, but only if my doctor requested the info. So far, it's not worth the hassle.

          So, Aubagio, like all of the other meds, has nurses who are no more useful than Dr. Google. Big surprise.

          Comment


            #6
            Did you notify the FDA with what you are experiencing with Aubagio now. I didn't know we could do that until I saw it written on the back of information on with of the other MS drugs.
            I had a "friend" die recently. He had been on Tysabri for over a year. I hope his family or his doctor notified the FDA so we will get good updated info of these drugs.

            Comment


              #7
              Alicious - Sorry to hear that it had not gone away as per your last post.

              I just started week 5 and maybe have had 2 or 3 gassy days since my previous post but no other issues.

              My month 1 liver panel was normal.

              Comment


                #8
                Working or not?

                I have been on aubagio for 28 days now. No side effects but I have progressed. So don't know if its working or not!
                Tiffany
                Dx. Nov. 2012 RRMS

                I place it in God's hands

                Comment


                  #9
                  thanks for the updates please keep them coming I have done the required blood work and the ppd test now its to my drs office insurance company and aubagio to see when i start asumming my tests were good

                  Comment


                    #10
                    laurasari, good luck with the med, and keep us posted!

                    My gastric stuff has settled down. No more diarrhea, but still looser/more frequent stools.

                    I now have itching. It's been a few weeks, and my back itches in different places. It's not so much that I can't ignore it, but it's been weeks, and since its listed as a rare potential side effect, I'm going with it.

                    The itch is like a normal itch, I scratch and it's gone for five minutes, then it returns at the same level of intensity. So, not like bug bites that get itchier as you scratch, thankfully. I keep checking, and I have no rash or hives that could account for this, and it's always my back and shoulders.

                    My bloodwork for month one came back and liver values are just fine. I'm at about 6 weeks on the medicine, and so far no hair loss either!

                    Comment


                      #11
                      here's some of my experiences with Aubagio...

                      I started taking these little blue pills on 1/24/13 after completing all the tests and having the Aubagio nurses/MS One to One question me. I had been on Betaseron since I was diagnosed in 2003. I had been becoming more and more disabled in the last 2 years and have feared I was becoming SPMS. My neuro doesn't want to categorize me as such YET but the more disabled I was becoming, the more risk I was willing to take and with my husband and daughter's encouragement, I decided to take this route and see if it might help.

                      So far I have had no noticeable side effects. If my hair has gotten thinner or is falling out more noticeably, it's so thick I can't tell. No nausea, no diarrhea. I can't recall if it causes UTIs and I have one currently. I have had two itty bitty times when my hands have itched, but it hasn't lasted very long or been very severe.

                      I am noticing a lot more energy and less sleepiness throughout the day. I have had a few weak, wobbly moments when standing that have made me fall a couple of times, but I don't know that it can be attributed to the Aubagio - I'm just diarying it for my next neuro visit.

                      I did contact my neuro about having my liver enzymes tested once a month and he didn't think it necessary and isn't going to take any blood until my next visit in April, so I guess I'll just have to take note if I have any jaundice, etc.

                      In a nutshell, so far, so good!

                      Comment


                        #12
                        PML

                        [QUOTE=emily06;1399296]Did you notify the FDA with what you are experiencing with Aubagio now. I didn't know we could do that until I saw it written on the back of information on with of the other MS drugs.
                        I had a "friend" die recently. He had been on Tysabri for over a year. I hope his family or his doctor notified the FDA so we will get good updated info of these drugs.

                        Reply-
                        Wow was your friend female? Was she JCV positive? Did the friend contract PML?

                        I went off Tysabri after 3.5 years last Nov. Tysabri was a wonder drug for me! Now supposedly Tysabri stays in your system for 3 months and now it's month 4 and am not on any DMD until BG-12 is approved. I'm staying positive!

                        Comment


                          #13
                          I'm now in month #3 with no issues. My month 2 liver panel was normal. My Feb Dr. appt was rescheduled for late March.

                          So far so good.

                          Comment


                            #14
                            Aubagio labwork bill

                            I just got the bill for that labwork Aubagio made us have before I could take their mega expensive drug. The bill is for $115.00. how am I supposed to come up with that money if I can't work (retired on disability). And my insurance, Medicare, didn't cover it.

                            Comment


                              #15
                              My one on one nurse called. They received everything from my dr on feb 18 as of fri they still are waiting for approval from my insurance company but I read somewhere it takes 1month so we still have another week. Please keep me posted thanks e everyone.

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