• Update from my Neuro!

    Posted by Ashley on October 10, 2022 at 11:52 am

    Hey all!

    I saw my neurologist last week for a follow up. I am currently waiting to see a hematologist at the end of the month to see if I am eligible to begin therapy with Cellcept and in a little bit of limbo right now. If I am able to get on Cellcept, Dr. G eventually wants to half my IVIG dose to 1g/kg for a total of 60 grams a month. I am a little nervous to do this, as I already have a fair amount of dip between IVIG treatments, especially on the 4th week.

    Another thing we are working on is insurance approval for me to be able to do my IVIG at home! I am really excited about this, although I will miss some of my infusion nurses but this will make my life so much easier and more comfortable too!

    One thing we were able to accomplish at my appointment was a repeat TUG test while being on Firdapse. A couple of months ago, I posted that my insurance was asking me to complete a TUG (Timed up and go test) to approve the necessity of Firdapse! (If you don’t remember or need a memory refresher, you can check that post out here).

    The first test I did was two months ago prior to taking Firdapse.

    The results were:

    Trial 1:  6.71 sTrial 2:  5.05 s
    The second trial (done on the 4th) while on Firdapse.
    Trial 1:  5.71 sTrial 2:  4.64 s
    Wow! What a change! I didn’t expect to see this change very much, although I knew the Firdapse was definitely helping me feel movement was easier!
    But this test put into words how much Firdapse (or for some Ruzurgi) makes life with LEMS easier for us!
    I would love for you to do the test and see if you get similar results with and without Firdapse on board! It would be really cool to compare answers!
    Ashley replied 1 year, 6 months ago 4 Members · 4 Replies
  • 4 Replies
  • dcarpenter

    October 11, 2022 at 9:03 pm

    Ashley, I am thrilled to hear this wonderful news!!  From modulating the IVIG, to HUG improvement to home infusion.  What a blessing that you have made such impressive gains and that you are exploring options to help you!!  Well done, Deborah

  • Ginny Boynton

    October 12, 2022 at 8:42 am

    What great news Ashley! Did you really start Firdapse for the first time just within the last two months? I remember how amazing the transition was when I began taking 3,4 DAP (Ruzurgi) in 2001. Do you take any other medicine to enhance the Firdapse? I also take Mestinon, Mestinon Timespan, Prednisone and Cyclosporine.

  • morgan

    October 13, 2022 at 6:51 pm

    Hey @ashleygregory757!

    I hope you’re enjoying your much needed vacation!

    I started CellCept (mycophenolate mofetil) this past July. Tacrolimus ended up not working out for me. I seem to be doing better on CellCept along with Prednisone and IVIG infusions.

    I hope you’re able to get your IVIG infusions at home. I’m thankful we have that option. Like you, I’m trying to get insurance to approve Rituxan infusions. The long-term use of Prednisone has caused vision problems and my neurologist doesn’t want to wean until I have a backup.

    That’s great how much Firdapse has helped you! That was a big improvement in just 2 months! I have not tried a TUG test. In the beginning when trying to figure out a diagnosis, physical therapists had me doing timed sit to stands. My balance, I’m afraid, would not be stable enough to do a TUG test without using a walker.



  • Ashley

    October 17, 2022 at 7:31 am


    Thank you! I am definitely excited about all of the new changes! Still waiting to hear from my insurance to see if they will approve the home infusions, but hopefully I will hear soon!


    Hey Ginny! I tried Firdapse very briefly when it was first originally FDA approved, but my insurance and my neuro at the time told me I had to pick either IVIG or Firdapse. I felt more benefit from the IVIG so I chose that, however now I’m on both and it has really helped! I do not take anything else, I tried Mestonin when I was originally diagnosed in 2015 but couldn’t tolerate the GI side effects.


    I’m sorry Tacrolimus didn’t work for you! Happy to hear the Cellcept is going well so far. I see my new hematologist on the 28th and I’m interested in hearing his opinion on weather I can start or not.

    I’m so sorry to hear about the vision issues also. Hopefully your neuro presents a strong case so you can get Rituxan approved. Please keep us updated! Would the plan to be to replace IVIG with Rituxan? Or is the plan to just to be able to come off the prednisone?

    I think the TUG test could probably be done with a walker, but it is very similar to timed sit to stand. I hope they can get your Rituxan approved soon so you can hopefully make some steps to improvement.

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