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How many DMTs have YOU tried?

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    #16
    I started with Avonex and had a relapse in short order then switched to Copaxone. That was doing no good as my MS was steadily progressing. So I switched to Tecfidera. I have been on Tec for about 1.5 yrs and had my first MRI about 3 months ago. It showed and I quote "Multiple new lesions in both frontal lobes". Besides that my clinical exams are progressively worse and my Neuro and my Son had to actually catch me before I fell flat only face. So my MS continues to progress at a steady rate.

    Tysabri is out of the question since I tested positive for the JC Antibodies. I am now going through the protocols to start Gilenya. A drug that scares me a bit but it's better than doing nothing. If this doesn't work who knows what's next?
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

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      #17
      I was on Rebif for 12yrs. than had an awful injection site rreaction that took 3 weeks in a "wound care center" to heal & left a huge scar.Now I'm on nothing for the last 2yrs.As I've "morphed" into SPMS He said I'm O.K.

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        #18
        I've never heard that about Rituxan -- it has a very long safety record, I know, dating back to the 1950s. My doc never mentioned any link with PML while I was on it, and he certainly was clear enough about that with Tysabri.

        And yes, be afraid, very afraid, of a major relapse after coming off Tysabri. It happened to me (and at least three others at my MS support group) and I'll never recover from the deficits it caused. Always discuss with your doctor about how you will taper off from it, if at all possible.

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          #19
          Rebif, Tysabri, tec, and now copaxone. Gonna learn to manually inject bc at 40 mg, the hard masses aren;t going away after weeks so the autoinject seems to be a bad op;tion.

          Tysabri is known to come back w/ a vengeance so be careful all.

          Take care my friends,
          S

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            #20
            Originally posted by poppydarling View Post
            I've never heard that about Rituxan -- it has a very long safety record, I know, dating back to the 1950s. My doc never mentioned any link with PML while I was on it, and he certainly was clear enough about that with Tysabri.

            And yes, be afraid, very afraid, of a major relapse after coming off Tysabri. It happened to me (and at least three others at my MS support group) and I'll never recover from the deficits it caused. Always discuss with your doctor about how you will taper off from it, if at all possible.
            Rituxan does have a chance of causing PML...much smaller than TY. However a chance none the less...most of the chemo drugs do. It's safety record is indeed impressive.

            I am not afraid of a major relapse coming off of Tysabri. I am not living my life in fear anymore.

            I have accepted the Tysabri Rebound because it is inevitable and it will most likely happen. Thus, I have developed a plan. 1) I am going to live each day I can while on Tysabri to my fullest and not worry about tomorrow. 2) I have to have hope that Rituxan will stop any major flare when coming off TY. 3). If I get PML somewhere in between, I have already signed the necessary documents for end of life care, because I am declining treatment of PML. 4) And as a final step, if I come off TY and go back down like I was, I have made arrangements for an assisted suicide.

            I am going for quality...not quantity, because I have absolutely no control over MS. All I can hope for and am really asking for are a few days of "wonderful" before my journey is complete.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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              #21
              I started with Avonex. 7 months of it. Hated it. Now on LDN (love it!) and 'my own devices'.

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                #22
                3. Rebif, daily copaxone, and I'm on 3 x weekly copax now.
                Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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                  #23
                  Rebif for just over two years and now I'm in my 10th month of tecfidera. I was having major needle fatigue and my wbc count kept creeping lower and lower, so my neuro said it was time to stop the rebif. I did not object.

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                    #24
                    It feels like all of them...

                    When I was first diagnosed I did almost 2 years of Betaseron but after a couple relapses I switched to Copaxone. I did that for a year but had more relapses. I decided to bite the bullet and try Tysabri despite being JC+. On my second infusion of Tysabri, I had an allergic reaction so I had to ditch that option. I then tried Tecfidera for about 2 months but I got hours of flushing every day and it was intolerable. I finally started on Gilenya which I've been on for about a year. Unfortunately, I'm having a relapse and have a yucky bout of optic neuritis. But, I think I'll continue on the Gilenya despite the relapse since more than a year without relapse is a pretty good run for me.

                    So... it feels like I've tried everything at this point. It's so hard to decide when to switch drugs!? Am I having a relapse 'cause the Gilenya is or isn't working?
                    Symptoms Oct 2009, Dx Feb 2010. betaseron 2/10-2/12. Copaxone 3/12- present.

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                      #25
                      Originally posted by cranberrysauce View Post

                      So... it feels like I've tried everything at this point. It's so hard to decide when to switch drugs!? Am I having a relapse 'cause the Gilenya is or isn't working?
                      That, my dear friend cranberrysauce, is the zillion dollar question about your Gilenya and ALL of these DMTs we try here. Scan through this thread and look at all the trial, error and most of all, the FRUSTRATION we are collectively suffering at trying to come up with the "right" treatment! It drives me nuts!
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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