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Who doesn't take meds for relapsing remitting and why?

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    Originally posted by Carolinemf View Post
    Hi all.
    Even after reading the quantity of posts that i have read on MS world in little under a year- it still amazes me at the similarities of opinions and experiences in regard to dealing with MS (and sometimes other things as well) This is at times comforting and yet when i read about those newly diagnosed still going threw 'trial n error' in much the same way I did over 30 years ago it can also be very disheartening that things have progressed so little.

    A lot of patients don't take meds for a considerable time after presentation any way because it some times takes years to get a conclusive diagnosis.
    It took me over 10 years to be diagnosed. Apparently my inability to speak and paralysis was 'all in my head'. This can be fairly typical for RRMS.

    After diagnosis I entered a study using Betaferon (Aus, Betaseron US)
    I took this for about 4 years. I was terrified not to take something as I had an aunt and uncle who had the most severe type and passed away in their early forties.'Scared to take and scared not to take' big time!!

    I decided to quit Betaferon because it's side effects were worse than my ms symptoms.
    I was fortunate to be fairly stable for quite a while with mild relapses.
    I personally believe that this was mostly due to stabilising my hormones.

    So other than the betaferon and one course of steroids (never wanted a second) I made it through about 27 years without other dmds.
    Just dealt with each relapse as it occurred and got on with life.
    I changed docs 4 n 1/2 yrs ago and he recommended I start Tysabri.
    I don't regret starting it, but i am still uncertain if it has helped. I am JC + but titers are reduced.

    I'm now about 32yrs past onset and am spms not rrms and experiencing significant brain atrophy and reduced cognitive function.
    I am at present weighing up the pros n cons of stepping up treatment to Lemtrada as my doc has recommended so the decisions never end.
    The hardest thing is that it is established that the earliest ANY illness gets attention the greater the chance of successfully treating it.
    I feel a bit like I may have missed the bus in this regard so am still undecided about whether the POSSIBLE BENEFITS outway the side effects with starting Lemtrada.

    How old are You? How long since onset? How disabled? Severest symptoms? Rate of progression?
    I am considering these things at present. As I have done in the past.
    I think if I were at onset stage and relatively young I would opt for the best med available to me.
    As others have indicated some times its easier to not have another thing to organise/worry about and i do find that I still begrudge the lost time, energy, money that i have expended with doc visits taking meds and stress that accompanies 'all of the above'.

    It is still an unfortunate reality that those with the most disability and progression from ms and have the most urgent need of meds still have the least options available to them.

    There are others with RRMS who can lead virtually a normal life with just a few speed bumps along the way.

    I fell some where in between and now my progression has caught up with me.

    If I'd been more aggressive with treatments , would I be better now?
    Would I be worse now if I had done nothing at all?
    Did pushing through regardless of the pain and stubbornly refusing to be beaten help keep me fit enough to recover each attache? Am I progressing more now because I am tired of fighting now?
    I have begun researching everything and changed my diet and started taking supplements recently. Should I have done this earlier? Will it help?

    These questions have no conclusive answer. Even after all these years its still down to a personal choice and opinions.

    All the best
    Summed up very nicely, Carolinemf. You can always tell who has "walked the walk".
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994


      I didn't go on a DMD for 3 years after first sympotm. I wasn't DX'ed and as symptoms stacked up I avoided doctors like a plague. I had the internet and knew what all the symptoms would add up to so I just didn't go. Finaly got a relapse bad enough I couldn't ignore it and went and was diagnosed almost imediatly did a MRI and Spinal tap to confirm and yep MS.

      Neuro put me on Avonex which I stayed on 1 year but had 2 relapses while on it and between working full time and spending my weekend with "flu like" symptoms I was wiped out. Decided cure was worse than diseases and told neuro. She said try Betaseron it's not as severe as Avonex for the side effects. Was on that for 3 months had another relapse and had traded a whole weekend of "flu like" for every other day of it including work days. I quit it as well. Neuro got mad and fired me.

      Found a new neuro and he told me about a study for a new once a day pill so I got in the clinical trial for Finglomod (Gilyena) and was on that 2 years. Then an insurance snafu kept me off it about 3 months then back on, I have been on it ever since. My progression is much slower than when I was taking nothing or Avonex or Betaseron and I seem to tolerate it well. I just changed jobs so I expect another insurance snafu in the near future so I will be off it a few months. I will decide at that point if I want to resume or not. Gilyena still has side effects I would love to be free of but it will depend. If I have 2 relapses while waiting for the new insurance I'll be back on ASAP if I have no relapses I will probably stay off. I'll let you know how it goes around November or December.
      Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou


        Off meds for now

        I was diagnosed in Sept 2013 and started on Copaxone, at my request, a few months later. The neuro I had at the time was trying to push Avonex, but I didn't like what I had read about it. A few months later, I ended up getting the awful side effect of Copaxone that makes you feel like you're having a heart attack, and I had that several days in a row. I then developed a rash and was told to stop taking the medication.

        My next choice was tecfidera, which gave me terrible stomach pains and nausea. I had issues with insurance at the time and had to stop taking it. I tried it again 2 years later, ending up with the same stomach issues and a brand new rash all over my arms. So I stopped taking it.

        I've had 3 relapses, including the one that lead to my diagnosis. The last 2 were only 5 months apart, this past April and September.

        I've found that changing my diet a bit and using essential oils for my leg pain works for now. Along with vitamin D, that's all I'm planning on doing until I get worse or a new med comes out.

        My husband and I are planning on starting a family in the next couple years. I'd like to be able to wait until after kids to start playing guinea pig with any newer medication.


          Hello fellow MSer ! I am going to be a pain and tell you that it is not a smart thing to ignore this disease by not medicating ! I did exactly that and began a slide down disability hill very quickly !
          I have one suggestion for you. Lemtrada ! That's all I have to say ! Good luck !


            I don't take any DMD's. I was diagnosed in October 2002 and avoided what was available because of the side effects.

            I made some modifications to my diet and started supplementing with vitamins. I have had a few minor episodes along the way but am happy with my decision.

            Doctors will push the meds and for some people it may be the way to go but not for everyone. There are tons of resources available at your fingertips all from the comfort of your home, dig in.

            Whether or not anyone decides to go on the DMD's, they must take care of their body. Avoid the sugars and grains, eat orgainc meats and veggies if you can afford it.

            Drink Coffee. YMMV
            The future depends on what you do today.- Gandhi


              If I knew then what I know now....

              I had a neuro that referred me to an MS specialist an hour away. Very first meeting, he hands me a list of all the meds I could switch to with no real thoughtfulness behind it. I was on Betaseron for years and pretty stable.

              My husband and I called him Dr. Feelgood bc anything I ever brought up he'd say, I could write you an Rx for that!

              Long story but ins. Dropped Betaseron, swirtched to Extavia, tripping and walking troubles started (still with old neuro), I insisted it was the switch, doc pushed to get back on Beta successfully, almost instant better again. Meanwhile I have MRI have ONE new lesion, Dr. Feelgood pushes the list in front of me and says, " you could risk getting more lesions, it looks like it lost efficacy."

              Lured by the siren song of oral medications, I switched to Gilenya. And it's been awful ever since. N ow I'm on Tysabri, but I feel even worse. Who knows? But if I knew then what I know now, I would've taken the risk of staying on Betaseron. Being generally stable (literally as well as figuratively!). means a lot!!!! I even would stay on Gilenya bc it looked as though I was adjusting, and I started to have good days but again, MRI looked way worse.

              Damn Dr. Feelgood. He's got too much in his arsenal and willing to take the risk.

              Now I'm wondering if I should try to back on Betaseron. Who cares about a stupid poke? But maybe it's too late.