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    Not on DMT

    I was just curious how many of you are not on any DMT and what are your reasons?

    Thanks in advance.
    Diamond


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~

    #2
    I took Copaxone for years. Never really saw any results. Doesn't cure anything. Doesn't treat any pain or symptoms. After so many years I started having strange side effects like chills and fever and shivering. So my neuro and I agreed I would not take it anymore or any other DMT. I used to take little breaks from my meds over the years and I always felt better without them. I have advanced to secondary progressive, but am still in pretty fair shape. Still walking and doing most things on my own. Sure, I've slowed down a lot and have a lot of pain. But I also have Fibro, Osteoarthritis and osteoporosis, IBS, Spondylosis, Gastritis and Gerd. Been hit with several autoimmune things. But, I just hated to keep putting chemicals and medicine in my body. I know I'm taking a chance, but life is chancy. I don't recommend it for anyone else. Just felt that, at this time, it's right for me.
    Marti




    The only cure for insomnia is to get more sleep.

    Comment


      #3
      Diamond - I am a big advocate of starting and staying on DMTs. As someone that found a wheelchair a few years after my diagnosis; I could only hope for earlier MS detection and treatment. That being said, a number of patients do not take DMTs due to cost, side effects, tolerability, distrust of the pharmaceutical industry, lack of personal progression, etc.

      Last month, a study was unveiled at the American Academy of Neurology annual meeting, suggesting that stopping DMTs may be acceptable for specific patient groups. A news article can be found here:
      http://www.medpagetoday.com/MeetingCoverage/AAN/51214

      A few important things to note:
      • The study used only observational data that is often disregarding by scientists
      • The study had less than 200 patients and were all 40+ years of age
      • The patients had no documented relapses for 5 years prior to stopping DMTs
      • The patients had a stable Expanded Disability Status Score for 5 years prior to stopping DMTs
      • The patients had used consistently used DMTs for 5 years prior to stopping DMTs.



      My 2 cents ...
      The average MS patient has a flare up every 13 months so all of these patients already had below average MS activity. DMTs are also known to work best early in the disease cycle when inflammatory damage is most common. Patients with more disability had fewer relapses that again may correspond to an advancement into SPMS. I wish they had discussed brain size/atrophy levels of these patients.

      My hope is that MS patients will continue to fight MS with all the tools available to them, including DMTs. They are literally a pain, expensive, inconvenient and troublesome, but with the increase in DMT usage patients are walking longer, working longer and maintaining a higher quality of life. There will always be a subset of patients that are non-responders and others super-responders. There will always be patients that fair well without the drugs and others that fair miserably with the drugs. For now, the science suggests that the average patient will fair better on a DMT than not.

      Our drugs are not intended to make you "feel better" today. In fact, may patients feel worse on DMTs, but over a 5-20 year period they should reduce the number of relapses, lesions and ultimately disability. That's the entire goal; that you would trade off some minor quality of life today, for an increased quality of life in the future. Saving your brain, capacity and abilities today also puts you in a better position to take advantage of future treatments. For me, it's preferable to wonder if I had not taken medications for years if I would be better off or not -- than -- to sit and in a wheelchair and regret not doing so. DMTs are far from perfect, but for many people they remain the best choice (in my opinion). There are more options today than ever so if you hate your current DMT, talk to your neurologist about changing to something else.


      I really appreciate your question and wondered the same thing in the past. I hope other people will respond to your post (as intended) so we can all learn from each other.

      Keep dazzlin ...

      Comment


        #4
        Hi Diamond57,

        I have never used a Disease Modifying Therapy (DMT).

        I was diagnosed in 1985. At that time there were no DMTs. The first DMT was Betaseron which was available to the general MS population in 1993 by Lottery. I did have a lottery number.

        I was notified by my Neurologists office when my lottery number was getting close. There was a discussion with my Neurologist and I decided not to go on Betaseron. Through the years this has simply been a personal choice.

        I have had 5 exacerbations, one in each year listed:

        - 1985 - severe
        - 1986 - severe
        - 1994 - severe
        - 2001 - mild
        - 2002 - mild

        If I had been on a DMT for the 3 severe exacerbations it would have been assumed the DMT wasn't working and more than likely switched to another one.

        If I had been on a DMT for the 2 mild exacerbations it would have been assumed the DMT was doing what it was supposed to do.

        Many with MS worry how much worse they would be if they didn't use a DMT. I often wonder if I would be worse had I used a DMT

        I have had quite a substantial improvement on the c-spine MRI and clinically I am stable. This may or may not be good as the outcome, overtime, was a diagnosis of Secondary Progressive MS, but this was made in my 28th year of diagnosis. I have had some progression, but very little.

        I still "look good" and if you didn't know me you would not know anything was wrong with me. I do use trekking poles as a mobility aid but not on a regular basis.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          In 2004 I became deathly ill after injecting faulty batches ofAvonex. Biogen told FDA that these faulty lots would not harm patients. FDA went along with it and took them at their word. Thus,patients were not told their batches in their fridge had "excess aggregates" .

          Mayo clinic found scarring on my lungs, a lesion on the heart and pericardium effusion, and it was their opinion that the Avonex caused body wide inflammation. I could barely breathe and it was a long fight back to wellness.

          Therefore, I am scared to try a DMT. I do not trust the FDA to protect the patient, nor do I trust the pharmas. The way Biogen handled me after this fundamental betrayal of my trust as a patient, was, IMO, distasteful.

          Comment


            #6
            I was on one for a while but stopped after a few years due to a scary reaction I had. I could no longer get past the fear of restarting the medication I was on. I decided to not to go back on anything for now and while I feel better and am doing fine, there are no guarantees.

            With that said, these medications are there for people who want to try and halt the progress, I know people on them for years and I know people who don't take them. Both seem okay. It's just such a hard and confusing decision to make knowing the "what if" will always be out there.

            Comment


              #7
              I was diagnosed at 58 1/2, and my neurologist and I agreed Tysabri was the best option. Since I was older, my move to SPMS would most likely be rapid, and the prevention of further damage was the goal.

              I did, indeed, move rapidly to SPMS after less than 2 years, and I questioned my need for additional infusions of Tysabri. My neurologist said, "If it ain't broke, don't fix it." Tysabri has been out for less than 10 years of continuous use, and who knows what another 10 years of research will bring? I'm JC-, I have no side effects from the drug at all, the monthly infusions go well, and my entire infusion is paid for by insurance. Watching all the "best new hope" drugs arrive on the scene and then quickly fail due to unexpected side effects leads me to believe staying on Tysabri is my best option.

              I still have progression, but that is part of MS, especially due to my age.

              If it ain't broke, I don't plan on fixing it.

              Comment


                #8
                This is the million dollar question of my life for sure! I was diagnosed at age 40, but very likely had MS from my teens. During all that time I only had optic neuritis once and very mild symptoms.

                Fast forward to a few years after diagnosis (during which time I took no drugs andI felt very well) when I had a moderate flareup and my doc recommended I go on a DMT. I've tried about five so far and I have gone steadily downhill ever since. It seems that each drug causes a setback, with the worst after I stopped Tysabri.

                I just came off my last drug and I'm taking only statins for now but I don't plan to take another drug unless we can be sure that it will not make me worse ( most made me feel terrible, including a pretty severe depression, and worsened my MS, either temporarily or permanently).

                Who knows what would've happened to my progression had I not taken the drugs at all? I will never know. I won't trade quality of life for a 30-40% chance that a drug will prevent a disability that may or may not happen. I only have now.

                Comment


                  #9
                  Stopped Avonex 6 years ago, was on it for about 4 or 5 years. I am doing better without it. I am not interested in any of the DMDs. I have had MS for 20+ years.

                  Originally posted by poppydarling View Post
                  This is the million dollar question of my life for sure! I was diagnosed at age 40, but very likely had MS from my teens. During all that time I only had optic neuritis once and very mild symptoms.

                  Fast forward to a few years after diagnosis (during which time I took no drugs andI felt very well) when I had a moderate flareup and my doc recommended I go on a DMT. I've tried about five so far and I have gone steadily downhill ever since. It seems that each drug causes a setback, with the worst after I stopped Tysabri.

                  I just came off my last drug and I'm taking only statins for now but I don't plan to take another drug unless we can be sure that it will not make me worse ( most made me feel terrible, including a pretty severe depression, and worsened my MS, either temporarily or permanently).

                  Who knows what would've happened to my progression had I not taken the drugs at all? I will never know. I won't trade quality of life for a 30-40% chance that a drug will prevent a disability that may or may not happen. I only have now.

                  Comment


                    #10
                    I am no longer taking a DMT. I tried Avonex, Copaxone, Tecfidera, and Gilenya all to no avail. The new DMT's on the market, such as, Lemtrada or Rituxan which is not new but is more like chemotherapy seem to be worse than taking them so my Neuro and I decided to stop taking DMT's all together.
                    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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