Viewing 5 reply threads
  • Author
    Posts
    • #20119
      Ashley Gregory
      Keymaster

      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!

       

    • #20129
      michael
      Participant

      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.

    • #20131
      Price Wooldridge
      Moderator

      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!

    • #20132
      DCarpenter
      Participant

      Yes I plan to attend and would like to discuss side effects from LEMS drug therapies.

    • #20134
      Price Wooldridge
      Moderator

      Great! We look forward to it. I’ll let @ashleygregory757 know your topic idea. It’s a good one.

    • #20140
      Ashley Gregory
      Keymaster

      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!

Viewing 5 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account

Verify you are not a robot