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QUESTION ABOUT IVSM IMPORTANT FOR ME!!

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    #1

    QUESTION ABOUT IVSM IMPORTANT FOR ME!!

    The last time I had IVSM I ended up in the hospital. I was having chest pains at work after taking my last infusion. I called my NEURO who sent me to my PCP. My PCP made a call to my Cardiologist who saw my right away. I had an abnormal EKG so was admitted to the hospital. My Cardiologist thought I may possibly have some blockages. After a Heart Cath everything was clear. He ordered a CAT scan and saw my lungs were filling with fluids approximately 50%.

    So now steroids are off the table for a flare which I'm having now according to my Neuro whom I saw yesterday. He didn't want to take the chance of IVSM.

    So now my question. Instead of taken steroids three days in a row, is it possible to take and infusion every other day? My thinking is it would give my body time to absorb or expel the fluids I retain while on steroids.

    Is it possible for an every other day infusion? And will you get the same help from the steroids? Also do steroids come in smaller doses such as 500 mg's instead of 1000 mg's? I would like to discuss this with my Neuro Monday.
    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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    #2
    Originally posted by Waydwnsouth1

    So now my question. Instead of taken steroids three days in a row, is it possible to take and infusion every other day? My thinking is it would give my body time to absorb or expel the fluids I retain while on steroids.

    Is it possible for an every other day infusion? And will you get the same help from the steroids? Also do steroids come in smaller doses such as 500 mg's instead of 1000 mg's? I would like to discuss this with my Neuro Monday.
    Hi Waydwnsouth,

    I'm not sure how much help IV steroids would be if you got them every other day. My guess is they might still help, but probably no where as much as they would by getting them every day.

    IV steroids do come in smaller doses. I've had 500 mg before, and another dose is 250 mg (given twice a day). But, I think the degree of effectivess of the smaller dose depends on your body mass. http://my.clevelandclinic.org/ccf/me...fact-sheet.pdf

    Keep us posted and good luck!
    Kimba

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

    Comment

      #3
      Talk to your Neuro about high doses of Oral Prednisone. A slightly different formula than Solumedrol (Methylprednisone). I hate oral steroids...you probably will too, but if a reaction is going to occur you can stop it quicker.

      I will warn you...first couple days of oral steroid can put you down for the count...they do me. You have to weigh cost vs. benefits.

      You could talk to him about a Medrol Pack. Low dose...same drug as Solumedrol. Might put a damper on things. I am finishing a Medrol Pack tomorrow...it helped. Not completely, but will hold me until my next TY infusion.

      BTW...you are taking a step down going from Tec to G, in my humble opinion. I would have that discussion with the Neuro as well.
      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

        #4
        Katie

        Why do you think I would be taking a step down going from Tec to G?
        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

        Comment

          #5
          Originally posted by Waydwnsouth1 View Post
          Why do you think I would be taking a step down going from Tec to G?
          Yeah I am curios too ..

          Comment

            #6
            "Step Down" should have really been stated as "Lateral." My bad...got to keep remembering this is the internet and written word.

            You have been moving through these drugs quickly. Like probably most of us, we have gone through injectibles, then orals, than infusions. The theory was to use the safest med (injectible) to control the disease.

            New theory is to hit fast and hard at the onset of disease. That is why TY is now a first line drug.

            If your not doing well on Tec...I would certainly try G. It would be logical. However, it seems to me with your current situation and I think you are in a Major Flare (not all flares are created equal), is making a lateral move the smartest decision? I don't know.

            In 2013...I was getting ready to start Tec, in fact I still have the starter pack in my medicine cabinet. Before I could even start my first pill...major flare. MS Specialist rerouted my DMD very quickly and put me on TY. The orals were not an option until I was stable. For me...they still are not an option.

            I was using a Rollater. You are using two canes and are from the sounds of it losing some ground. Not using a Rollater now...fully ambulatory for about 30 minutes. But I have had a break through flare at the 6-month point, and Lord knows what this is, MRI showed nothing. But, I have had zero progression...so I guess that is good.

            TY also stopped the Flare.

            At some point, and its my personal opinion again, G will be the Gold Standard amongst the Orals if they can get rid of some of the side effects.

            So, if it were me, the question I would be posing to my Neuro is if an Oral DMD is the best course of action in light of this current flare.

            All DMDs are scary...no perfect solution. Its not like taking an aspirin to get rid of a headache. I myself have considered on more than one occassion stopping all DMDs and let the disease progress.

            And one last point to ponder...those of us with RRMS...many of us will not benefit from any of the drugs much after a certain point.

            Hope this makes more sense. Whatever drug one may choose...its a very personal choice...I hope whatever choice you make, its the right one.

            And with that...I am officially taking a break for awhile from MS World and just going to worry about myself.
            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

              #7
              Katieagain,
              Well we opted for the higher dose of oral steroids. I, like you, I have taken down. I am on my second day now. Yesterday I severe abdominal cramping and to nausea and fatigue. The fatigue could be MS but I'm betting it's the steroids. I hope this helps because I don't mind saying they are kicking my behind.
              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

              Comment

                #8
                Originally posted by Waydwnsouth1 View Post
                Katieagain,
                Well we opted for the higher dose of oral steroids. I, like you, I have taken down. I am on my second day now. Yesterday I severe abdominal cramping and to nausea and fatigue. The fatigue could be MS but I'm betting it's the steroids. I hope this helps because I don't mind saying they are kicking my behind.
                I too just finished a Medrol Pak. Have had them before...not fun, but at a minimum they should dampen the flare a little. Mine was given because my CNS dizziness was not being controlled by my medication...it kicked in, but not until Day 6.

                I have never had them for Major Flares, only IVSM or wait it out. But you cant take IVSM. However...you are getting the same drug at much lower doses than IVSM, so you should not have the issues you had before.

                I will say two Medrol Paks knocked out a bout of ON on me. IVSM was not readily available so we had to improvise. So...who knows...this might be a winning ticket for you.

                Make sure you eat plenty of food you take the pills and dont eat too much acidic food.

                As I said before, the damage is already done...the flare is the uncomfortable part. Lets hope you do not establish a new normal and hope that you remit to where you were before the flare. But you need to give that time too.

                If your body is saying to sleep...you need to sleep....best medicine there is for a major flare. This is an excuse to be "lazy" for awhile.
                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

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