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    Anyone veto DMD's?

    i haven't met with my neuro yet to discuss possible treatment options, but I don't like anything I've ever heard about the drugs available. For those who read my introductory post, you know that I've been dealing with this for 40 years without a diagnosis, and I'm actually quite satisfied with how I've done things up to now.

    I rest whenever I can, space out my activities, use IcyHot and aspirin for pain, have had good luck with dandelion tea and cranberry capsules for urinary issues, and do medicinal herbal teas when I feel it's necessary.

    I'm not opposed to drugs in general; I just don't think they're a good choice for me at this point in time. Is there anyone else out there who has opted against taking the recommended MS meds?

    #2
    Originally posted by NoraS View Post
    Is there anyone else out there who has opted against taking the recommended MS meds?
    I haven't ever taken a DMD. Dx'ed in 2002. I'm happy with where I am.
    The future depends on what you do today.- Gandhi

    Comment


      #3
      I'm usually a fairly vocal advocate in favor of DMD's. They are designed to reduce the severity and frequency of MS flares and to delay the progression of MS.

      I believe that, in my case, because it took two years to obtain an MS diagnosis and five additional years to start on a DMD that was effective for me (my first one was not effective), that the progression I've experienced as I've reached my 50's is likely caused, in large part, by the lesions that formed during those seven years.

      But, your case is so different than mine. You've been experiencing symptoms for 40 years already and are likely also in your 50's by this point. You no longer have the option to begin treatment early.

      I'd recommend just having a real heart-to-heart talk with your doctor when your appointment to discuss meds comes up. Some neuros begin to take PwMS off of meds when they reach their 60's (maybe sooner). If I were in your shoes, I'd really want to know what benefits your doc believes you might receive if you begin meds at this stage of your MS.

      Make a written list of questions so that it will be easy to remember everything you want to discuss.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #4
        Thank you both. Mamabug, that's pretty much what I was thinking. If I'd been dx years ago, I would have tried the drugs, but at this point in time I think the risks would outweigh any possible benefits. The bulk of the damage has been done, and I'm okay managing it as I have been all along. The only thing that would make my life better now would be if I could quit work entirely and still have an income!

        I'll keep you posted on what the neuro says on Tuesday.

        Comment


          #5
          Ditto to the other replies.

          I think I had MS many years before diagnosis. I kind of had "shorts" in my circuitry long before my diagnosis that I now believe to have been relapses/remissions (but who knows?). I just know that when I got diagnosed, I was experiencing only what can best be described as "constant yuckiness"! It seemed to feel like I had PPMS from the get go. I did try some RRMS drugs, but felt like I was a fraud every time my doctor wrote RRMS in my paperwork rather than PPMS (but I did not want to rat myself out, naturally). There are treatments I have heard about for PPMS, but I guess the sound of them doesn't knock my socks off.

          P.S. To Boudreaux: what do you do then if not DMTs? Also, do you still get MRIs? I was wondering if those of us who dumped our DMTs should take a look in our heads from time to time just to make sure nothing is totally off the charts lesion-wise. If there is, then what would I do at my age anyway (55 y.o.)? Tysabri or something similar?
          Tawanda
          ___________________________________________
          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

          Comment


            #6
            Originally posted by NoraS View Post
            Is there anyone else out there who has opted against taking the recommended MS meds?

            Hi Nora,

            I had contrast / no contrast MRI's (brain / spine) late '07. Neuro cited "a mono phasic condition" with new MRI in spring '08, then showing a "hand full" of lesions. A Lumbar puncture came back clean (?).

            Doc said we caught it early! HAVE to start treatment ASAP. Choices were limited (CRAB). Began C march '08.

            Found and joined MSW in '09, lurked a bit at first. Noticed that my dx of RRMS wasn't a match to others? What is remission? Or relapse for that matter. Still I took the C for 8 years. Slowly getting worse. Stopped in Jan '16. Still getting worse. Same pace? I think so. Never a relapse or remission just a slow loss of physical ability over all that time....

            Through MSW I now believe I had MS sx as early as '96 or '97. That it is called PPMS. And there wasn't any useful DMT then. Now they have O. I think about it now and again, but at 21 + years, my age, side affects...?

            Many here are comfortable with their choice of DMT's, some moving from one to another with or without success. The disease is such a crap shoot.

            My personal opinion, only you know yourself, if it gets worse, will you not beat yourself up with the "if only's" or will you just accept it?

            Believe me, I'm not indifferent but resigned to make the most whatever comes my way.

            Comment


              #7
              Originally posted by Tawanda View Post

              P.S. To Boudreaux: what do you do then if not DMTs? Also, do you still get MRIs? I was wondering if those of us who dumped our DMTs should take a look in our heads from time to time just to make sure nothing is totally off the charts lesion-wise. If there is, then what would I do at my age anyway (55 y.o.)? Tysabri or something similar?
              Exercise, eat good fuel, LDN and yes, I do get MRIs. I was getting them every 2 years but am getting them annually now through the VA. I actually just got one a few weeks ago and the radiologist report read little to no changes since last imaging. Thatís 4 or 5 years stable for me.

              Not sure what you should do with your circumstances, Iím really not up to speed with the meds available. At any rate, clean living is always a plus.
              The future depends on what you do today.- Gandhi

              Comment


                #8
                Thoughts on for-MS drugs

                I was diagnosed with RRMS 29 years ago, have never taken any of the for-MS drugs per se. Was given clonazepam for stiffness and I find it useful. I pace myself, as my stamina is poor. I haven't had a flare-up in so long that in 2012 a neurologist at the MS clinic deemed my MS to be in 'burn out'.

                I have grave doubts about the pharmaceutical industry. I have a degree in pharmacy and used to write drug monographs. One of the editors I was submitting my work to said that 'we were told' that 80% of the time we're being deceived. She didn't say who 'we' were or who came up with this statistic but it made me think. Is it all about money and marketing? I wonder...

                I hope I haven't troubled anyone who is taking one of the for-MS drugs. It's a decision for each person to make.

                Comment


                  #9
                  Nora, do you have an update for us? It's been a few months since you posted on this thread and I'm wondering what your neuro said. Or, maybe you posted it somewhere else and I just forgot.
                  ~ Faith
                  MSWorld Volunteer -- Moderator since JUN2012
                  (now a Mimibug)

                  Symptoms began in JAN02
                  - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                  - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                  .

                  - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                  - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                  Comment


                    #10
                    I went ahead and did the first two half-doses of Ocrevus, but I'm trying to see my GP before going back to the neuro.

                    I've had nonstop colds and assorted infections since my first infusion, so I'm seriously considering dropping any further treatment. My ears keep clogging up, I spent 6 weeks with constant toothaches of various types (and lost 4 teeth!), I cough all night long too often, and I get so congested at night that I wind up ripping off my CPAP because I can't breathe.

                    No OTC or prescription drugs or herbals are helping, and it's just not worth it. I just want to get the GP's thoughts on the matter (I've been seeing her for 32 years) and then discuss it in depth with the neuro before I make a decision.

                    Comment


                      #11
                      Thanks for the update. I'm sorry that it didn't work out better for you. I hope you find another solution.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Stopped when I reached my 60's

                        I started with Rebif, then Betaseron, then Copaxone, and finally Tecfidera, all left me with increased disability and breakthrough flares.

                        Then, because these medications screwed up my immune system leaving me with non-stop sinus infections and 2 PIC lines with IV antibiotics, and a boat load of oral antibiotics, giving me the gift of kidney disease. Also lost my job, and I don't blame them because the fatigue from MS and sinus infections was crippling, and Provigil didn't touch it.

                        Then, I got IVIG, also known as liquid gold, for 18 wonderful months of infusions. It helped my MS long before the sinus infections, until my liver enzymes went up and I had to stop IVIG. I went from a wheelchair back to the dance floor where my husband and I resumed ballroom dancing. I have not taken DMDs since, no enhancing lesions, but loss of function has continued. I have a heavy lesion load despite all those DMDs.

                        Aging has not helped my abilities, and spasticity has led to spondylolisthesis of the lumbar, thoracic and cervical spine. I have had two cervical surgeries and lumbar surgery, the recovery was brutal and the pain continues, increasing the deformity above and below the surgeries. I am done with surgery and I am looking into Ketamine infusions. I LOVE steroids, they relieve my pain. I will look into medical cannabis and maybe a connection to a guy who sells 'roids.

                        Comment

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