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started Lemtrada today! 8/24

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    started Lemtrada today! 8/24

    Today was my first day with Lemtrada. Most of my side effects during the day were a result of the IV Steroids. Then in the afternoon I got a headache. It's mostly gone with caffeine and advil. Now I am home and I am sooo fatigued. I feel like I'm walking through water. The infusion nurses said that they have noticed the fatigue being worse on the first day. So I'm just going to plow through and get on with my other days!

    #2
    Keep us posted on how you do - I have a thread going on my experiences from my July treatment.

    Best wishes as you progress thru the week!

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      #3
      Good luck and I hope that you do well on this drug !

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        #4
        Getting ready to start day four. All the premeds have kept most of the side effects at bay. I had the headache the first day and a fever the second but they both left with meds. I've mostly just had fatigue on and off. I'm starting to feel itchy. At this point it's probably psychosomatic because I'm worried about getting the rash. The nurses warned us it usually starts the fourth or fifth day. I'm not going to lie, it has been a long week. I never knew that sitting in a chair for seven hours could be hard. I'm glad I only have two more to go!

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          #5
          You are almost done!

          I never got a rash, neither did the other person that had Lemtrada the same week next to me.

          One common thing is a bad steroid rebound over the weekend - the Dr. as well as a patient that recently went thru treatment warned us. I documented my experience in my thread.

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            #6
            What is a steroid rebound?

            Originally posted by pb909 View Post
            You are almost done!

            I never got a rash, neither did the other person that had Lemtrada the same week next to me.

            One common thing is a bad steroid rebound over the weekend - the Dr. as well as a patient that recently went thru treatment warned us. I documented my experience in my thread.
            The night of my last Lemtrada infusion, I had some hellacious tremors and shaking, high temps, the works, for the whole night. After that, I was improved the following morning. Doe that sound like steroid rebound? Not an issue since then, just curious if that was what was going on...

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              #7
              Originally posted by BadAttitude View Post
              The night of my last Lemtrada infusion, I had some hellacious tremors and shaking, high temps, the works, for the whole night. After that, I was improved the following morning. Doe that sound like steroid rebound? Not an issue since then, just curious if that was what was going on...
              Basically a rebound is re-emergence of symptoms that were controlled while taking the medication.
              For me the steroids help my strength, especially my legs.
              On Saturday I was so weak standing and transferring in and out of my wheelchair and fell twice.
              Was a little better on Sunday and each day afterward. Took me about a week to get back to my pre-treatment strength.

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                #8
                I think the Tremors are a side effects of the Lemtrada. That's your body reacting to all the dead white blood cells in your body. Drink lots of water!


                Well, I'm one week post Lemtrada. I still have crazy headaches, dizziness and fatigue. My mom is staying with me to help with the kids. I'm not sure how I could've done everything without her. My mind is fuzzy too. I'm having a hard time focusing. My legs are much stronger though. I'm not sure if it's the steroids or what but I'm going to take it.

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                  #9
                  One Month Update!

                  Hey everyone, It has been a month since I started my first week of infusions. I figure it's time to update.

                  Before I did Lemtrada, my whole right side was weaker than my left, I had dizziness every day, balance issues, headaches, a heavy feeling on the right side of my face, and numbness in my right hand and from the right knee down.

                  After a month, I have noticed that my numbness has lessened and I go whole days where it isn't there at all. My dizziness is better, but it is still there. The Valtrex makes me dizzy and sick so I'll have to wait another month to see how that is when I stop taking the Valtrex. In the last week I've noticed my headaches are almost nonexistant. My face still feels heavy, but it's only at night when I get really tired. The numbness in my right arm is gone! I still have some numbness in my right leg and foot, but it is better and, again, only seems to come at night.

                  I went to my Neurologist a week or so ago and he tested my strength. I am much stronger than I was before Lemtrada.

                  So overall, I would say that my symptoms are slowly improving. The ones that are there seem to come back at night when I'm tired.

                  Now about the fatigue, it is bad. My Dr said that would be the case for the first 3 to 6 months. I wake up around 8am, take a nap at noon or 1pm for a few hours, and then go to bed around 10. My awake time isn't very active either.

                  I know this is a marathon and not a sprint. So I'm very happy with my progress so far! I can't wait to see where I'll be at in two years.

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                    #10
                    Coming up on Month 4!

                    I'm sorry I should've updated a month or two ago. It seems I only think to check this forum when I feel bad or a major change in medication is happening.

                    Months 2 and 3 were great! I've seen an improvement in my balance and strength. I carried my 9 month old Niece down the stairs with confidence! In the past I wouldn't have trusted myself at all. I would've handed her off to someone while I held on to the railing for dear life. There was even a time when I wouldn't have even walked with her. So that's a big improvement! I also managed to go hiking with my husband and 3 boys. I haven't been able to do that since I relapsed and got diagnosed two years ago.

                    I got my taste back! I haven't been able to taste chocolate in two years. Now I can!

                    My energy is starting to come back. I actually prepared dinner for my family two nights last week! Usually I just throw something frozen in the oven. It was nice to spend time in the kitchen again.

                    I think I'm starting to hit the four month slump. I'm battling a never ending cold and this past week I started to feel run down again. Besides the cold keeping me down, is it possible that what little bit was left of the steroids is finally leaving my system and I'm just left with my broken body? That's my theory, anyway

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                      #11
                      Thank you for sharing! I will be starting in 2 weeks so it's always nice to hear how people are doing. All the best to you and Happy New Year!!

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                        #12
                        6 months

                        Well, it's been six months since I had my first round of Lemtrada infusions. A lot has changed for the better.

                        Around the time I hit month 5, my fatigue really started to abate. Now, instead of dragging myself out of bed at 8:30am I am waking up without an alarm and with energy around 7 or 7:30. I also am taking smaller naps of a half hour instead of 2 hours.

                        My vertigo is better. It's not completely gone, but here are days where I am not dizzy at all. On the days when I do feel the world spin, it's usually because I'm tired and should go to bed or the weather is bad.

                        My sense of smell has improved. This didn't completely go away, but now I'm noticing smells that I didn't realize were around until now!

                        My balance is improved. I rode my bike with my family for the first time in a year and a half. I was a little shaky, but not so bad that I was uncomfortable.

                        Numbness of the Right side of face is much improved. Now when there are bad weather days or when I'm PMSing half my face doesn't go numb or feel heavy like it used to. That's kind of nice.

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                          #13
                          I really appreciate the updates. AND glad to hear you are doing well!

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                            #14
                            I'm glad I can be an encouragement.

                            After reading what I wrote six months ago, I'm amazed at how far I've come.

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                              #15
                              Thanks for posting your good news and I hope it continues !!

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