New to this community

New to this community

I was diagnosed with MS in 1994 after nearly 20 years of symptoms that came and went. Have been on several meds between 2001 and now and will be starting Lemtrada in a couple of weeks. I am also an MS Certified Nurse and occasional speaker at patient education seminars. I am interested in hearing if anyone out there has been on Lemtrada and what your experience has been. Thank you.

18 Replies

  • Welcome to our My MSAA Community, CherieMSCN ! Always great to have an MS-certified Nurse in our company!

    Hope you enjoy the many topics of conversations posted and stories shared as we continue to grow this online community for everyone affected by MS.

    I also hope you taken a look at some of the educational events MSAA offers all across the country - if you haven't participated in one already! Check out

    John, MSAA

  • Hi cherie. My name is tom I was diagnosed about 30 yrs ago. Things were great until roughly 10 yrs ago I went through and ugly divorce since then things have gotten pretty bad for me. I've been on differant drug therapys over the yrs. I started lemtrada this past July yes I was very nervous actually I still am. Just so many side effects to worry about. Not sure how much reading you have done on Lemtrada. It's almost like where do I begin. If you have a little time to spare and want to hear more about my experience with the LEMTRADA give me a shout back. I just got home and need to relax for a little. But either email me or try and reach me through this site. I just signed up to this site today so I have to learn my way around it my email is I'm from the Boston area I'm 57 look forward to hearing back from you. Tom

  • Tom, I have been watching Lemtrada when it was called Campath in Europe and through the trials in the US. Have been talking with my doc about it since it was FDA approved in 2014 but he has wanted to try other things first. I have done well with everything I have been on over the years including high dose Cytoxan (which is one of the reasons Lemtrada has been on hold for so long for me). I think I probably know as much (intellectually) about the drug as just about any body but each persons experience is different. So far, everyone with whom I have spoken has not had problems with the infusion or followup.

  • Hi Cherie ,

    My name is Holly - I just had my first infusion of Lemtrada about 2 weeks ago! I'm not far enough out to talk about progress, but the infusion itself is fresh in my memory. Most of it went very well. My worst reaction was near the end of Day 4 - I had hives and a spike in blood pressure. There were lots of people looking after me, though, and I certainly didn't feel like I was alone in my fight against MS with Lemtrada. We got my BP down eventually, and after a small hiccup on Day 5 I was fine. The bigger problems were my continuing reactions after finishing the infusion. I had hives so badly the night after I finished that I couldn't control as I had before - I had to go to Urgent Care and get some shots. The hives continued to pop up for the next week and a half, but gradually lessening, and for the last 2 days I haven't had them at all. Other than that, I'm just tired. My energy is slowly returning as well, but I'm afraid to push it very much! I'm still using hand sanitizer all the time, being careful with my diet and staying away from crowds and sick people. My first follow-up is mid-September, and I have an appointment with my neuro at about the same time. So - I can't tell you about the outcomes, but despite problems my experience at the infusion itself was that there was lots of support. I don't get the impression that most people have reactions that continue after the infusions have stopped, so I wouldn't worry too much about that! You should probably expect the tired, though.

  • Actually, Hollie, that reaction is quite common (over half get rashes for a week or more afterwards and need antihistamines to manage. I thought I might tuck a bottle of aloe gel into my bag for some topical relief if needed. I've heard from three folks who were infused in the last 6 months that the med"is a piece of cake" compared to some of the other meds and not have seen any problems with the monthly lab results.

    My doc is ordering weekly labs until possibly 3 months out because of my history of having been given Cytoxan. Genzyme picks up the cost of the labs that the prescribing physician orders. A lot of the infusion reactions could also be attributed to the steroid given as premed but I am not getting that because I have not done well on steroids in the past.

    Thank you for weighing in.

  • Oh that's good to know - I thought I was just strange for having the reaction for so long! One of the premeds and one injection I got at Urgent Care was IV Benadryl - it worked well for me, and might help control reactions if you have them. I also took oral Benadryl at home occasionally - it sometimes worked! Good luck to you if you decide to go for it with Lemtrada!

  • Since I am not doing steroids for premed, IV Benadryl takes its place. Also have an order for an extra dose if needed during the infusion. Date was changed this morning to September 19 to start.

  • Wow, soon! Good luck to you! Glad you'll get the Benadryl - it really helped me.

  • How nice to see you here!

  • And you , my friend of more than a decade!

  • Hello there! Wonderful to have you on the forum with us. My neuro wanted more research to be done on Lemtrada so, I've began Rituximab. I was dx in '02 and around 2 yrs ago fatigue began to interrupt my life. I'm an RN and I've not worked for over a year. I know I'll get better...fighting the good fight!!! I don't care if I have to limp, or walk slower than a turtle! Staying on my feet IS the goal!! Never giving in to this MonSter!! Blessings!!

  • Welcome to a fellow RN. I now have 48 RNs with MS in my address book.

  • Really? That's awesome! I'm working on reaching out!

  • contact me at cheriemscn@gmail and i will try to connect you with the International Organization of MS Nurses website and chat room.

  • I did indeed email you!

  • And I just sent a lengthy reply.

  • I heard your resent speaking at GardenCity was fantastic

  • Thank you! Seems like I am on the road a lot lately sharing wellness tips with MS as well as answering questions on what is new or in the pipeline for treatment. Have been in RI, LI, NYC, SC, FL, LA this spring with additional programs being scheduled.

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