Announcement

Collapse
No announcement yet.

Posting about Lemtrada

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Posting about Lemtrada

    Well I come here often to Read about Lemtrada since my wife took hers about a Month ago, I really don't think it is doing what it was cracked up to be from what I've read on various Forums! From what I've read now, had I known this I believe I would have Discouraged her from taking the Infusions.
    I have seen maybe 3 fairly good days in the past Month and those were just fair. She seems to be going down hill again and I read More Negative's on the Face Book pages than I do Positives!! I wonder now more about the side effects than I was lead to believe before!
    I also Wonder why I don't see more posts on here than I do, it seems there is a total Lack of Interest here, maybe everyone is going to F/B.

    #2
    I posted details of my 2015 and 2016 journeys thru year1 and year2 treatments but nothing has really changed since. My PPMS has continued to make me weaker and not sure where I'd be if no treatments. Hopefully in the long term I will get, or already have, a slowing in progression.

    I do not regret my decision and have not had adverse side effects.

    I don't use or post on Facebook - only here so not sure what is happening elsewhere.

    Best wishes to your wife and for positive results in the future.

    Comment


      #3
      Hi KO4BG
      Craig here
      I don't think you will see any big changes using any DMD's the results should show on an MRI as no new lesions, but the symptoms can still get worse the drugs are to stop MS getting any worse.
      I have just completed my 2nd infusion of lemtrada and I was also after a miracle that didn't happen I have read that some have significant improvements after their 2nd dose I live in hope, I think you and your wife made the right decision otherwise you would always be wondering "if I had only"

      I feel I waited too long before starting treatment I wish I had of done this years ago and halted it then.

      One month isn't really enough time to reboot your immune system I wouldn't expect any changes for at least 6 months good luck Craig

      Comment


        #4
        Originally posted by KO4BG View Post
        Well I come here often to Read about Lemtrada since my wife took hers about a Month ago, I really don't think it is doing what it was cracked up to be from what I've read on various Forums! From what I've read now, had I known this I believe I would have Discouraged her from taking the Infusions.
        I have seen maybe 3 fairly good days in the past Month and those were just fair. She seems to be going down hill again and I read More Negative's on the Face Book pages than I do Positives!! I wonder now more about the side effects than I was lead to believe before!
        I also Wonder why I don't see more posts on here than I do, it seems there is a total Lack of Interest here, maybe everyone is going to F/B.
        You need to educate yourself more about Lemtrada if you think you're going to be seeing improvement a MONTH after treatment. This is a long-acting drug and effects become obvious YEARS after completing treatment (time is the only way to see if it did halt progression).

        Comment


          #5
          Originally posted by kate16 View Post
          You need to educate yourself more about Lemtrada if you think you're going to be seeing improvement a MONTH after treatment. This is a long-acting drug and effects become obvious YEARS after completing treatment (time is the only way to see if it did halt progression).
          Kate 16: I assure you I have Educated Myself on Lemtrada & Read everything I can find on it, but I see Very Little on here! I do not expect a Miracle but I do worry about side affects, I haunt the F/B Lemtrada pages & Alabama Lemtrada reading about different people & how they cope!
          I am a Realist, I have seen several people with MS in my lifetime that didn't have a choice so I expect Nothing from Lemtrada But I do hope for a Miracle!! My wife & I have been married 48 yrs after knowing each other 2 wks, so I'm NOT Giving up Now!!
          Woody

          Comment


            #6
            Woody,
            I am also a Lemtrada recipient, first round was end of January 2017, second round will be January 2018. I have been ranting on this board for a few years, now. I have been suspended for expressing my distaste of some members. I understand your bitter frustration with the lack of participation of some members. Take some solace in the fact that you are knowledgeable enough and healthy enough to keep ahead of the MonSter. Keep our head down and don't take any wooden nickels ! lol Good luck
            JerryD

            Comment


              #7
              KO you are so right!! You posted this over 8 months ago but I am just now reading this. I posted my nightmare with Lemtrada and I had some snide and personal remarks made about me and I haven't been on the site since, that was probably 2 to 2 and a half years ago. I noticed that on the internet as of 2 years ago I couldn't find not one negative thing about Lemtrada and then when I posted my experience on this site I was insulted by 2 different people, I thought this was very strange.

              But my aftermath with Lemtrada has been life threatening 3 times from a near fatal fungal infection that started in my knee and then went to my lungs, my thyroid and into my bone. I have a quarter size hole in my leg bone and nothing can be done about it. I have been in and out Vanderbilt for the past 3 years, I was finally discharged from their care this past April. It's the worst thing I have ever experienced in my life. The pain from the lungs is like nothing I have ever experienced in my life and I had 3 children natural child birth with no drugs and a kidney stone, that pain doesn't even begin to compare to the pain and horror that I have experienced post Lemtrada. The constant pain and fear of fighting for each breath and wondering if you are going to stop breathing when you go to sleep, it just hasn't been worth it. Also I have only had the first phase of the Lemtrada, the 5 day therapy, I was in such bad shape by the time the 2nd. dose was due, there was no way I could do the second round. Also my doctors at Vanderbilt told me not to ever take Lemtrada again.

              But as I noted in my past posts, I realize I am not the norm of other people that have taken Lemtrada, the fungal infection is rare, I have never had a bad reaction to anything I have ever taken except this, I was one of the rare ones. My infection came from a surgery so if you taken Lemtrada, surgery, any surgery is risky and sometimes surgery is necessary so people should keep this in mind when making their decision.

              On the positive side my mobility is sooo much better even in spite of now having a permanent hole in my bone and knee problems. So many of my symptoms have improved but it's taken 3 years and 3 near death experiences and a lot drive and will power to get to where I am today. The Dr.'s at Vandy said I was a really really tough and strong woman and also I had good attitude which they say was very important for me to beat the odds.

              Now on the cons, let's say the fungal infection never happened, my fatigue is sooo much worse then it was before the Lemtrada. I have always said for me the fatigue is the worse part of MS. I have always been hyperactive, I ran 2 miles a day, 5 days a week and worked out at the gym 4 days a week. I was a single mom with 3 kids and the director of a federal program with awards and acknowledgment from D.C. Now I am soo fatigued and weak I can only do one or two things a day, by super time I am so worn out most nights I am unable to fix myself supper so I wind up eating snacks for supper which isn't healthy.

              I understand that I am not the norm but this is my story and my experience it's up to each person to decide what is best for them but I believe everyone's experience is important. I am not crazy or a drama queen as some people have suggested, I am one that never calls my doctor unless it's an exacerbation or something very serious. My suggestion for anyone considering Lemtrada needs to do a lot of research and talk to everyone you can who has been through the Lemtrada therapy.
              Good Luck.

              Comment

              Working...
              X