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    Starting Lemtrada

    Hello, my wife of 48 yrs has had MS for about 10 yrs and been on everything from Avonex to Tysabri to Techfedera (?) now the Doc wants her to go on Lemtrada in about 4 wks. She is going to take it, as with everything she's been on I have Reservations & Mixed Feelings! I don't see a lot on here about Results is there a reason for that or everyone just bashful?
    Thanks
    Woody

    #2
    A bunch of us have posted our experiences - both my year1 & year2 are out there.
    Lemtrada is a newer treatment and not a first-line treatment...but there are quite a few threads out there.

    Best wishes to your wife, and to you too as you support her.

    Comment


      #3
      Originally posted by pb909 View Post
      A bunch of us have posted our experiences - both my year1 & year2 are out there.
      Lemtrada is a newer treatment and not a first-line treatment...but there are quite a few threads out there.

      Best wishes to your wife, and to you too as you support her.
      pb909 Thanks, my wife has R/R, but seems to be going down hill for the past several months, her last MRI was stable as have been the past. We are scared to try the Lemtrada but also scared Not Too! I haven't found all that much on the Med. There is some here but not a lot to give you Hope, for some reason not that many people post. Your post & several by Jerry? are about it.
      Thanks for your Reply
      Woody

      Comment


        #4
        Woody,

        I had my round 1 infusions four months ago. My advice to your wife is to drink lots of water before, during, and after her treatments. I say before because it will help ensure her veins are hydrated and makes the infusion go more smoothly. The water helps rid the body of the b and t cells during and after the infusion. Yes, she will find herself dragging her iv pole to the bathroom like it's her job, but it's just a part of the process.

        She will be groggy from the Benadryl, and maybe out of sorts because of the steroids. I slept off and on through my infusion. The third day was my "worst" day overall. I broke out in hives about four hours in. The nurses gave me another dose of Benadryl and kept a close watch on me while the reaction subsided.

        It's important to keep Benadryl and Tylenol on hand after you leave the infusion center because she will be at risk of having an allergic reaction and developing a fever.

        There are two support groups on Facebook that I have found to be very helpful. If you search "Lemtrada" or "Lemmies" you will find them. They're both closed groups, which allows for some sort of anonymity if that is important to you.

        My last point is that we went to an event sponsored by Genzyme (the company that makes Lemtrada) that we found very helpful. We were on the fence about whether I should receive this treatment and were invited to attend. A doctor presented the information and answered our numerous questions. A nurse who had received Lemtrada helped us make up our minds. We thought I would have to be cloistered away until my immune system rebuilds. We learned that is not the case, but I have to be careful to wash my hands often and stay away from people who are sick. You can find an event at Lemtrada.com.

        I hope you find my input helpful.

        Best wishes to you and your wife.

        Comment


          #5
          Woody,
          I have posted numerous times, as I suspect you have seen. I am happy to hear that you are helping your wife to decide on Lemtrada. I finished my primary course on January 27 of this year. And I have no regrets.
          I suggest that your wife drink water for all of the reasons that are stated in all of these posts. She will also need to stay in a self imposed isolation for about a month, beginning the first day of infusion . I hope that your wife has as much success as I have had. Good luck

          Comment


            #6
            Jerry D., hope your doing good, My wife goes back for her first Dr. Visit tomorrow post Rd 1 of Lemtrada. She has had Good & Not so Good results so far, she has been Great for the past week but not so good today, she is now 2 months past her first round. Blood work done 11/6/17 and have not heard anything from it so I hope no news is good news! I will post again tomorrow night after Doc visit. She been drinking LOTS of Water and NOT been around anyone except me and our Daughter that lives close on our farm, tomorrow will be her first outing in 2 mo.
            Woody

            Comment


              #7
              Hello, sorry I forgot to post back about my Wife's Doctor Visit the first of the month of Dec. We got great news on her Blood work, The Doc said her Blood results were right where they should be, so that made us feel good! We got out of the House for the first time in 2 mo. but not in crowds with all the Flu in N. Alabama, we're staying out of Large Crowds until after the first of the New Year!! Donna has really been doing GOOD for the past 3 or 4 wks! to the point that she has even cooked a little which she hasn't done in several years! Her thinking seems to be better, she has that Beautiful Smile and Flashing Green Eyes back that I haven't seen in a LONG LONG time!! Her Balance is still a little shakey, sorta like she's had a few drinks! LOL, I tell her she's going to have to lay off the Booze!! All in all its Been Worth it for us so far, Never know what tomorrow will bring but so far so good!!
              Woody

              Comment


                #8
                Good to hear - thanks for the update.

                Comment


                  #9
                  Woody,
                  Thanks for the update. I hope she will continue to mprove. I am going to schedule my second round very soon.

                  Comment


                    #10
                    Hi Woody,

                    glad to hear your wife is doing well and hope it continues

                    My best wishes!

                    Linda (one who has been on Tysabri 11 years )
                    Linda

                    Comment


                      #11
                      Very happy as well to hear the good news!

                      I developed a single 1 cm large lesion the first year of my lemtrada infusion. It was the second relapse in that year (my earlier mri showed 7 new active ones at that time) but I am not sure at what point between mri's this second relapse occurred bc some of my symptoms are hard to attribute solely to ms bc some are mood related and I have bipolar. Ok, my belabored point is don't get discouraged the first year. There is a therapeutic lag for some - while others improve sooner than later. And since we get at least two infusions, some may not see zero activity until after the second (or third) course. I've always had aggressive lesion development so I'm holding judgment and Doctor Singer who is well versed with this med has not suggested moving to rituximab which is an option for non-responders.

                      Hopefully everything will continue to go as well - this is a highly effective DMD which is why we all have chosen it despite the rare but lovely list of side effects and risks. It's still better that getting that badly-placed new lesion imo.

                      Good luck to you and your wife!
                      So

                      Comment


                        #12
                        Glad to hear!

                        Hi Woody!

                        Glad to hear your wife is doing well. I wish the best of luck to you guys and good health. Lemtrada can be a stressful experience.

                        Im going for my round 2 Infusions starting tomorrow. My round one went pretty well Iíd say and it took me about 5 weeks to recover. I had some odd cough that always lingered but eventually went away. The last couple of months have actually been pretty good. Until these last 2 weeks. Iíve been exhausted, blurred vision and shocks in my left leg which keep me from sleeping. Iím wondering if itís part from stress of the upcoming round 2. I donít like dealing with the weeks of recovery. Anyways, long story short, itís been up and down but hopefully for the better!

                        And I absolutely love that you guys have that fun sense of humor. Lol. I also need to lay off the ďboozeĒ...haha. Thanks for that MS. 😉. So happy to hear you see the sparkle in her eyes. Love to hear stories like that. Take care and all the best!

                        Starla
                        DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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