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Please Post if Positive Experience on Aubagio

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    Please Post if Positive Experience on Aubagio

    My Neurologist is starting me on the 7mg dose of Aubagio. This will be my 4th drug in 6 yrs. Frankly, the side effects scare me. I am a 49 year old divorced breast cancer survivor, living with MS. I have been bald for a year of my life and that was plenty for me. The skin problem don't seem to affect as many people but I really need to hear some positive stories before I consider swallowing that first pill. Thanking you for your input.

    #2
    Four Years No New Lesions

    I too had breast cancer 7 years ago but didn't need chemo. I have lost some hair on Aubagio but certainly not even near balding.

    I have some issues and am not sure if they are side effects of Aubagio or not: high blood pressure and bowel issues. I have always been dizzy (my first and worst symptom) and I think the blood pressure meds are making that worse. But what is caused by Aubagio, I do not know for sure.

    I just had another MRI with no new lesions and my doctor is quite happy that "Aubagio is working for me". I haven't had a flare or new lesions since starting Aubagio over 4 years ago.

    Comment


      #3
      2 Years Strong

      First - Big High Five for being a breast cancer survivor. I've family & a couple friends who have fought that nasty thing. Every win against that is fantastic.

      I'm 57 and have been taking Aubagio for 2 yrs, 4 months. It is my first, and only, DMT. I was VERY hesitant to begin taking any DMT, but reality made it clear that I needed to.

      I did have blood tests monthly for a full year instead of the recommended 6 months (my neurologist is rather cautious-I like that), testing now is every 6 months. Everything is great. White Blood Cell count is still right where it belongs, liver functions are well within normal ranges. All other tests are also normal.

      Side effects. A tiny bit of diarrhea around the end of the first month, but not even bad enough to bother grabbing Imodium. It lasted only a couple weeks before resolving. I did drink a lot more water than usual then, I was thirsty. Also I did have a bit more hair in my brush at around months 4 to 6. Not enough to call it "hair loss", and my very observant husband didn't notice the difference on me. (side note-Biotin was suggested by my dermatologist for eczema, but it helps with hair growth/regrowth & may have been responsible for me not losing much.)

      The ugh. The packaging is ludicrous. C'mon already! Who needs all that cardboard, plastic, & foil? Tough to dispense if you've got tricky hands. (Hints available if necessary)

      Best Part. No new lesions. No new symptoms. No worsening of existing symptoms.

      My opinion. This stuff is great.
      Good luck.
      "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


        #4
        Thank you for responding. I know from message boards with breast cancer...most of the time people with good experiences don't post. I thought it was worth a shot. I have hit a bump in the road. My Neurologist had taken 6 vials of blood when I was there to get my baseline. I had been taking Tecfidera for the last 2.5 years. He is taking me off due to infection rates, bruising and low WBC. My blood counts came back so low there is no way I can go on Aubagio and I am not a candidate for any other drug right now. Went off Tec and having repeat blood work next week. If numbers are still low I can't go on Aubagio because numbers won't recover. So I'll have to wait and hope given time they will come up. Thank you again for responding.

        Comment


          #5
          Originally posted by kalden View Post
          Went off Tec and having repeat blood work next week. If numbers are still low I can't go on Aubagio because numbers won't recover. So I'll have to wait and hope given time they will come up.
          I've been thinking about you. Any news yet? Fingers crossed for some good news.

          Tina
          "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


            #6
            Omg!! I agree with the packaging! I HATE those blister packs!!!!

            Comment


              #7
              Originally posted by carrie1429 View Post
              Omg!! I agree with the packaging! I HATE those blister packs!!!!
              Grab a pair of sharp scissors & cut straight down between the rows of pills. Wiggle the super thin foil strips from between the many, many labels of paperboard. Now it's really easy to pop the pills out. If you need child-proof packaging, ask your pharmacist for an empty bottle & pop in all the pills at once.
              Saves my sanity!
              "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


                #8
                Been on Aubagio since 1/2016. No side effects; no new lesions. I'd recommend it.
                PS- the packaging is awful!

                Comment


                  #9
                  Originally posted by TinaP303 View Post
                  First - Big High Five for being a breast cancer survivor. I've family & a couple friends who have fought that nasty thing. Every win against that is fantastic.

                  I'm 57 and have been taking Aubagio for 2 yrs, 4 months. It is my first, and only, DMT. I was VERY hesitant to begin taking any DMT, but reality made it clear that I needed to.

                  I did have blood tests monthly for a full year instead of the recommended 6 months (my neurologist is rather cautious-I like that), testing now is every 6 months. Everything is great. White Blood Cell count is still right where it belongs, liver functions are well within normal ranges. All other tests are also normal.

                  Side effects. A tiny bit of diarrhea around the end of the first month, but not even bad enough to bother grabbing Imodium. It lasted only a couple weeks before resolving. I did drink a lot more water than usual then, I was thirsty. Also I did have a bit more hair in my brush at around months 4 to 6. Not enough to call it "hair loss", and my very observant husband didn't notice the difference on me. (side note-Biotin was suggested by my dermatologist for eczema, but it helps with hair growth/regrowth & may have been responsible for me not losing much.)

                  The ugh. The packaging is ludicrous. C'mon already! Who needs all that cardboard, plastic, & foil? Tough to dispense if you've got tricky hands. (Hints available if necessary)

                  Best Part. No new lesions. No new symptoms. No worsening of existing symptoms.

                  My opinion. This stuff is great.
                  Good luck.
                  I HATE the packaging!!!

                  Comment


                    #10
                    packaging

                    Curious about the packaging. I'm just starting and it arrived in a regular pill container.




                    Originally posted by TinaP303 View Post
                    Grab a pair of sharp scissors & cut straight down between the rows of pills. Wiggle the super thin foil strips from between the many, many labels of paperboard. Now it's really easy to pop the pills out. If you need child-proof packaging, ask your pharmacist for an empty bottle & pop in all the pills at once.
                    Saves my sanity!
                    Littlemissy

                    Comment


                      #11
                      So far, so good

                      6 days on. All ok.
                      Littlemissy

                      Comment


                        #12
                        Originally posted by littlemissy View Post
                        6 days on. All ok.
                        That's terrific, littlemissy!

                        Hope you have continued success!

                        Take Care
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment

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