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Our next LEMS zoom meeting!
Hey all!
We are changing up the “schedule” this month on the zoom meeting.
Our next zoom meeting will be Tuesday, August 30th at 5:00 pm EST.
My insurance is making me jump through some hoops to approve Firdapse, so I will be at an appt two hours away on our normal meeting day.
Thank you for being flexible this month!
Price and I would like to continue our “meetings” with a little bit of structure, we want to try to pick and focus on a topic for the first 30 mins and then have the remainder for questions/concerns/issues you may be having.
Does anyone have a topic they would like to speak about this month?
Will we be “seeing” you this month? Let us know in the comments!
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6 Replies
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yes i started rituxan and took it twice. it made me sick a week later . is that normal? and how do i know if it is working? i am still take the 4 day ivig. firdapse and so many other meds for this disease. is that normal?
my question? how many medicines do we actually need? this will be my first zoom meeting if i figure out how to attend. lol see you all on the 30th. -
Thanks for telling us your experiences with Rituxan. A friend of mine has just started infusions, and I’m anxious to see how it goes for her, and it’s improvements to her LEMS and lifestyle.
To join the Zoom meet, that day there will be a topic post with link to join. Follow the link and you’re in!
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Yes I plan to attend and would like to discuss side effects from LEMS drug therapies.
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Great! We look forward to it. I’ll let @ashleygregory757 know your topic idea. It’s a good one.
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Hey @scoobydoo1963
We can definitely talk about Rituxan! I don’t have personal experience with it, but I know several of us have taken or currently get Rituxan infusions so maybe they will have some words of wisdom for you!
@lemsdiscussion
Sounds good! We can definitely talk about that too!
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Hola, quiero que sepáis que el dia de la sesion Zoom Meeting de este foro murió mi padre. Desde entonces no recibo un correo de vosotros ni stoy al tanto de vuestra lucha con la enfermedad y estoy pasando como es lógico, un periodo muy dificil. Voy a volver a pinchar que me notifique las respuestas y si no recibo os vuelvo a preguntar qué ha podido ser.
Espero estéis fuertes y que cada vez haya mas experiencias y màs informacion sobre todos los tratamientos.Hello, I want you to know that on the day of the Zoom Meeting of this forum my father died. Since then I have not received an email from you nor am I aware of your fight with the disease and I am going through, of course, a very difficult period. I’m going to click again to notify me of the answers and if I don’t receive it, I’ll ask you again what could have been.
I hope you are strong and that there will be more and more experiences and more information about all treatments.
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We are very sorry to hear of your father’s passing. It’s difficult when a child loses a parent.
Lamentamos mucho el fallecimiento de tu padre. Es difícil cuando un niño pierde a uno de sus padres.
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