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Running low on “the juice”
Good morning all!
I am running low on my “juice” this week because I have my infusion on Thursday and Friday.
If you’re wondering, Price and I lovingly refer to IVIG as “the juice!”
There is definitely a noticeable difference for me by the beginning of week three.
What symptoms bother you the most when you begin to “run low?”
For me, It’s a big loss of energy. Everything seems to move slower and I feel as if my whole body is heavier to carry.
Sometimes it feels like I’m walking through mud.
Sometimes my energy levels are so low that even talking tires me out. Today is one of those days.
My brain fog gets harder to control and hide and my voice becomes somewhat monotone because I don’t have the energy to get excited. I also seem to trip on my feet more often and have to remember to pick my feet up.
Do any of you also have these problems?
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3 Replies
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Hello
I am seeing a specialist about ivig. One question I have is can you take other drugs like ruzurgi when your transfusion is wearing off? Do you think I could get off my immunotherapy if I actually get the ivig?
what are your thoughts. I do not have anyone with LEMS information.
Joanne
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@joanneevans Joanne, I get IVIG every four weeks which is fairly typical, as the new antibodies start to drop off somewhere in the fourth week, typically. I take Firdapse (same active ingredient as Ruzurgi) always, regardless of my IVIG schedule. I have no personal experience with immunosuppressants, so that vs IVIG in its place, should be a discussion with your doctor. Ultimately, it all comes down to what works for you best to keep LEMS symptoms at the minimum. We’re glad to have you on the forum. Ask questions anytime!
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Hey @joanneevans
Yes, most patients do take Ruzurgi or Firdapsein combination with Mestinon and IVIG to help with muscle weakness. I would recommend taking this around the clock regardless of your IVIG schedule to get the greatest benefit.
It may be possible for you to discontinue immunotherapy with IVIG. So far, I have not taken any immunosuppressants because my IVIG keeps things in control as long as I get my treatment on time, but everyone is different. I would definitely discuss this more in depth with your doctor!
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