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Lemtrada users ! Where are you ?

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    Lemtrada users ! Where are you ?

    Hello everyone ! I am curious what experiences other MSer's have had after being infused with Lemtrada ! I have been cheering and crowing,is forum, on this forum, about my experience, before, during and after ! My experience has left me nearly 'euphoric' and I feel that there must be others, out there, with experiences, maybe positive, maybe negative !
    Where are you? Who are you? There must surely be some others ! I know that I am a singular character but I am certainly not the only Lemtrada user on this message board ! Your stories would be appreciated !

    #2
    Jerry, two names that come to mind are "spacedive" and "60mustang". You may want to pull up their posts and see where that sends you . I followed 69 for a while, but she ?got busy with life? and her blog entries kinda dwindled to nothing. As for spacedive, I believe that he still posts here sometimes .

    Lemtrada is something that I was VERY interested in, but alas I do not have a valid prescription pad , and I couldn't get either of my neuros to agree that it was something to consider. Latest suggestion from them was Aubagio . I contacted the pharmacy, jumped thru their hoops and still ended up with over $2000 a month co-pay (BTW NOT do-able for me). As a result of that I am at a point of not taking - and not wanting to take - anything.

    Before you suggest it I have already followed your long-time suggestions . I have a MS specialist as one of my neuros, and yes my vit. D level is being monitored and supplemented .

    I will follow you as long as you continue to post, because I want to see when / if your functions return, and what you did for that to happen. And yeah, I know, we are all different. I am still listed as RR but believe that I have moved to SP, and have pleaded with the neuros that I am running out of time ...

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      #3
      msgijo,
      Thanks for your response. It, somehow, validates me . I hope that something I have posted, in the past, has helped you. I continue to have good days with no negative changes in my overall condition. My wish is that I will get some of my functionality back. I hope that you find some drug that works for you, soon. 'Better living through better pharmaceuticals' ! Good luck

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        #4
        Hi Jerry! I only read the posts, hardly ever post myself. I did Lemtrada a year ago. I don't have anything good to say about the drug or the MS 1 to 1 people so I keep my mouth shut! My neuro is trying to push me into doing the second round but I am refusing. Do you belong to the Lemtrada page on Facebook? There is a ton of great stuff on there. I did fine with the infusion itself until a few weeks after it hit me like a bus ( I think the steroids were holding me up). I have read a lot of patients have a three month and six to nine month slump. I love your posts. You are one of the few I will stop scrolling and read! Jen

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          #5
          Maryjane135, thanks for your post. And the compliment ! I guess it's obvious that I will not 'sugar coat' and I will 'shoot from the hip', somewhat foolishly ! I 'call em' like I see 'em' ! Now that I have experienced MS for 7 years and I have discovered that the medical establishment has inadequate treatments, I feel it is only fair that I point that fact out as often as I can, to counter the 'extremely' positive marketing efforts of the pharma machines. Witness the Tecfidera TV commercials. What a joke ! Wishing you well, Good luck

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            #6
            JerryD - It's so good to see that you've improved! You've always taken such a vocal proactive approach and I'm glad it's paid off!

            One benefit I noticed is that I don't get phosphenes anymore when I take a shower. They were like small worm-shaped sparklies that floated around. They were kinda fun haha! But the benefit is that I am probably less susceptible to heat/humidity and it will be interesting to see how I do in the summer.

            I've also been given hope by the lemtrada. Also I read (barts ms research blog) that pharma could do more to make it less risky but they have yet to find a financial incentive to do that. Ugh burns me up to remember that. But I guess the good news is that it will only get better for others in the future.

            Keep posting it's such a spirit lifter to read your feisty posts!

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              #7
              sardi_g,
              If I have posted something that has somehow lifted your spirit, in any positive way, I accomplished my goal! I am known to talk a lot! And my mind is always racing . So I post on this message board to spur any responses from other unfortunate MSer's. I feel that any conversation is good conversation! Good luck

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                #8
                Finished round one 8 days ago

                Hi Jerry!

                Glad to hear you've done well so far! Sounds like you're pumped and ready to take on the world. That, in itself, can be seen as a win! 💪🏻

                So I had round one done, I believe the week following yours. I was so nervous right before but my family and the nurses helped me thru it and once the actual infusion started I began to relax a little. Overall I think I did quite well. Better than I expected.

                Day one: I was doing well until about half way done the day when I became very nauseated and dizzy and fevered. The nurse stopped the Lemtrada and in a half hour restarted it at a slower pace. Once that was done I felt better but the fever stayed for the rest of the day.

                Day at two and three were a breeze. I watched a lot of Netflix and listeneded to music

                day four: I had the rash. Mild on my chest. Then I broke out in hives on my face and my chest felt tight and I was coughing and wheezing. Took Benadryl and reactine for the reaction. And my nurse waited awhile before giving me a puffer. She was hesitant because I just finished 3 days of steroids. But I kept wheezing and coughing so I took it and it helped. She sent me home with it but didn't need it again.

                Day five: Felt pretty tired but overall good.

                The week after was basically sleeping. I've never slept so much in my life. By day 3 I had a little bit of a break down because I really wanted to feel normal again and not a zombie, trapped in my body that didn't want to move.

                I would say say each day has been a little better than the last. And today, day 8 in recovery I feel more like myself. I didn't nap during the day and was able to drive to the store. Yay!

                So I feel like this is all heading in the right direction! I just have to be patient with myself as my body recovers. 😊
                DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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                  #9
                  Starla,
                  Welcome back! I was waiting for you to check in ! I am sorry that you had some negative reactions! It sounds like your team helped you through it. Good team ! I had only a little 'flushing'. No big deal. My infusion nurse was on it, no surprises ! An experienced team is essential !
                  That is the reason that I rant on this board about consulting an MS specialist. I hope it is going to continue positively for you, as it has been a positive experience for me . Good luck . Don't be a stranger .

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                    #10
                    Thanks Jerry!

                    i agree that an experienced team helps. My nurse definitely knew what she was doing. She was great and same with the gentlemen that was with me for 2 days. Very caring and knowledgeable.

                    Im slowly working my way back to normal but again trying hard to be patient with myself and trying hard to not overdo it. It's easy to think I can try and do everything but my body is keeping me in check. I barely do anything and I'm exhausted. So I'll keep resting and letting my body do it's healing. I feel like there's good things to come later on.

                    Keep up up the good work Jerry and I hope you keep doing well!
                    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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                      #11
                      Starla, It looks like we are not, entirely, out of the woods, just in a 'clearing'. That's OK by me. Anything positive is better than I have had for the last 7 years. Good luck

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