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    Alternatives to steroids?

    Seems like I've read, from some of you, that you've used something other than steroids to treat MS flares. i have an upcoming 6-month appointment with my MS specialist, and wanted to ask her about this option for the future.

    What was the alternative med some of you have used, how effective was it for you, and what is your opinion regarding the pros and cons, when comparing it to steroids (oral prednisone)?
    ~ 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.

    #2
    Six steroids and Acthar Gel. http://www.acthar.com/

    • Acthar works differently than steroids. Steroids supplant, and reduce the production of, your natural hormones (aldosterone, cortisol and corticosterone). After a steroid treatment regimen your body slowly increases the production of these same hormones until they reach normal levels.
    • Acthar does not supplant your natural hormones, but instead boosts the production of aldosterone, cortisol and corticosterone. The increased amount of these natural steroid hormones helps your body reduce inflammation, spasticity, etc. Acthar is also believed to affect the T&B cells that trigger inflammation. As the increased production of your hormones wane, they will gradually return to normal. Since your immune system knows the production levels of your hormones this also helps prevent a steroids crash.


    Acthar is considered to be fairly safe and is routinely used in children. That doesn't mean you won't have side effects, but the indication means it's probably not outright poison like some other medications. The biggest drawback to Acthar is the high cost so ensure you know what, if any, payment is required. They do have a financial assistance program, but the weekly cost is still close to a new economy-sized car.

    Please keep us informed on your decision(s) and progress.

    Comment


      #3
      The price alone of Acthar would make me even sicker .
      Brenda
      Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

      Comment


        #4
        I have done oral steroids, IV steroids, and Achtar Gel.

        Out of the three...IV Steroids work the best and provide the biggest punch and smash the flare the quickest.

        Achtar Gel required injections and Oral Steroids alone were brutal. I would never do that again except for a Medrol Pack.

        Out of the three...they all have the same side effects.

        There is something called Plasmapherisis (sp?)...but I don't know anything about it. You might want to Google it.

        If its a small flare...I just wait it out. I have always heard that if you don't take steroids within 2 weeks of a flare starting its too late. It is not true for me. I have never had IVSM, with the exception of when I got ON within two weeks. IVSM worked even after two months.

        Good Luck at your doctors appointment.
        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

        Comment


          #5
          Originally posted by KatieAgain View Post
          I have done oral steroids, IV steroids, and Achtar Gel.

          Out of the three...IV Steroids work the best and provide the biggest punch and smash the flare the quickest.

          Achtar Gel required injections and Oral Steroids alone were brutal. I would never do that again except for a Medrol Pack.

          Out of the three...they all have the same side effects.

          There is something called Plasmapherisis (sp?)...but I don't know anything about it. You might want to Google it.

          If its a small flare...I just wait it out. I have always heard that if you don't take steroids within 2 weeks of a flare starting its too late. It is not true for me. I have never had IVSM, with the exception of when I got ON within two weeks. IVSM worked even after two months.

          Good Luck at your doctors appointment.
          Katie -- I've also had success with steroids that were begun long after my flare began. In fact, my experience, every time that I don't take steroids immediately, and once, when we experimented with a significantly lower dose, is that my flares just continue to get worse on their own. So, now I always begin steroids right away.

          I used to take IV SoluMedrol. But, I have only one vein that is easy to access, and when a 5-day IV needed to be re-started in a new spot, it once took 2 competent nurses two hour and 6 pokes to insert the IV in a 2nd vein. Since then, I request only oral steroids. They are awfully bitter tasting and wreak havoc with my GERDS (acid reflux), but, I'm not willing to risk going through that again. Other advantages to oral vs IV are cost and convenience.

          The past four years, I no longer need the 1000mg high dose that used to be rx-d for me. I do 5 days at 80mg, followed by a taper of, probably, 12 days.

          If achtar is that high-cost, and there aren't really any advantages in terms of side effects over oral steroids, I'll probably just stick to what I'm doing.
          ~ 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


            #6
            Originally posted by Mamabug View Post
            But, I have only one vein that is easy to access, and when a 5-day IV needed to be re-started in a new spot, it once took 2 competent nurses two hour and 6 pokes to insert the IV in a 2nd vein.
            Hi Mamabug,

            You would be a candidate for an implanted port. Requires a minor surgery, but so much better than being poked over and over! Found this (but there are several other brands) which explains them: http://www.smiths-medical.com/Upload...%20Info809.pdf

            Thought I'd put this info out there, since it might be something worth considering. It really does make getting IVs much easier! Best of luck.
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #7
              Originally posted by Kimba22 View Post
              Hi Mamabug,

              You would be a candidate for an implanted port. Requires a minor surgery, but so much better than being poked over and over! Found this (but there are several other brands) which explains them: http://www.smiths-medical.com/Upload...%20Info809.pdf

              Thought I'd put this info out there, since it might be something worth considering. It really does make getting IVs much easier! Best of luck.
              Thanks. If I ever need to have frequent IV's again, I suppose I could consider it. I'd hate going through surgery pretty much and I don't really want some foreign object permanently sticking out of my body if it's not necessary.

              Originally posted by Mamabug View Post
              ... I no longer need the 1000mg high dose that used to be rx-d for me. I do 5 days at 80mg, followed by a taper of, probably, 12 days...
              Since I no longer do the high doses, taking an 80mg prednisone dose orally is no problem. The reason I asked about alternative meds wasn't the IV thing; it was the horrible side effects of steroids, but it sounds like other options might not be much better.
              ~ 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


                #8
                Hi Mambug

                I too have had IVSM and you are right, getting poked over and over is a bit annoying. So what I have them do, is just leave the IV in my hand. They cap it off, secure it with tape and Kerlix or Coban. Then when I take a shower, I just wrap it in Saran Wrap. For the most part, I don't even know it is there.

                Then at the next infusion, they unwrap it, flush it a little bit, and hook the IV, no more poking. We have done this several times, even for the five day treatments.

                This is might be something to consider and ask the nurse if it would work for you.

                But, let's hope you don't need it anytime soon!
                Echo
                DX 2007 Started Ocrevus on 2/14/2018

                "Some where over the rainbow...."

                Comment


                  #9
                  Originally posted by Echo2099 View Post
                  Hi Mambug

                  I too have had IVSM and you are right, getting poked over and over is a bit annoying. So what I have them do, is just leave the IV in my hand. They cap it off, secure it with tape and Kerlix or Coban. Then when I take a shower, I just wrap it in Saran Wrap. For the most part, I don't even know it is there.

                  Then at the next infusion, they unwrap it, flush it a little bit, and hook the IV, no more poking. We have done this several times, even for the five day treatments.

                  This is might be something to consider and ask the nurse if it would work for you.

                  But, let's hope you don't need it anytime soon!
                  Yup; that's what they do for me, too. It has worked for five day treatments, sometimes for me, but often, it came out on Day 3 and had to be redone.

                  Glad that works, consistently, for you.
                  ~ 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

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