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Begin Lemtrada infusions on Monday 1-23

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    #16
    Sounds like the steroids are the same as my first treatment July 2015. I thought it was reduced as my year2 shows below...but maybe that didn't include year 1 and I don't know if the dosage is "suggested" and our local Dr. can decide.

    year1 day1-5:
    1000 mg, 1000 mg, 1000 mg, 500 mg, 500 mg

    year2 day1-3:
    500 mg, 250 mg, 125 mg

    You are halfway home !

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      #17
      Hi Jerry:

      You've said in the past that you've never been on high dose steroids. If that's still true, then you may need to prepare yourself. You may feel OK now, but coming off high dose steroids can be brutal for a week or two after your last infusion. If you aren't prepared for steroid withdrawal, you may want to blame all the side effects on the Lemtrada. You may certainly have some side effects from Lemtrada and you may not be able to tell which effect is from which drug. But from what's I've been reading about Lemtrada, there's a good chance that most of the side effects may be from the steroids. Just so you know.

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        #18
        Thanks jreagan70,
        I'm only following the doctor's advice on this. I did have HD steroids for 3 days, a couple of years ago, and I have prednisone to take, in a decreasing dose, starting on Saturday. I am getting day 4's dose, which is 500mgs and tomorrow I am scheduled to get 250mgs. My last infusion day 'graduation day' ! Yay me ! Bye Bye MS! That's my prayer !

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          #19
          Hope it's going well

          Hi jerry! Hope it's still going well and you're doing good.
          DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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            #20
            I must make a comment about some peculiarities, that I never read in the literature. Water ! Drink, drink, drink ! And drink more ! About 1 gallon per 8 hour day ! Good luck to anyone that does the Lemtrada ride !

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              #21
              Originally posted by JerryD View Post
              I must make a comment about some peculiarities, that I never read in the literature. Water ! Drink, drink, drink ! And drink more ! About 1 gallon per 8 hour day ! Good luck to anyone that does the Lemtrada ride !
              Good point.

              Not sure if from the lit or my Dr., but I was advised:
              day before: hydrate 60-80 oz and bland diet
              and to keep drinking water on the treatment days.

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                #22
                I have to add a few things about getting the Lemtrada infusion therapy.
                The most important thing is to be prepared . The pre-infusion tests are blood draws and urinalysis. I also had to do a tuberculosis test and make sure that my flu and shingles vaccinations current . 3 days before the treatment theget patient needs to begin on an anti-viral pill, an anti-histimine and an antacid. There will be 4 years of monthly blood draws and urine tests following the treatments. I hope this helps some others to ease the jitters that can come with the infusions. Good luck

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