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New to the LEMS Forum
Hello again, I’m Ron Lisjack from Newport News, VA. I started noticing weakness and movement issues around Dec 2018. Started the Doctors round Jan 2019, numerous Doctors, Neurologists, Neurosurgeons and Mayo Clinic. Diagnosed in summer 2019, started Firdapse 6 months, didn’t think it helped much, then on to IVIG Infusions 6 months, still had issues, Neurologist then put me on Prednisone, Now we’re getting some where, was able to increase my mobility but the weight gain is horrible. Not sure if all 3 treatments are needed.
Thanks Ron Lisjack -
3 Replies
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Hi Ron! Firdapse is certainly first line treatment for LEMS, though multiple medications are often used as part of the plan. In my case I use pyridostigmine (Mestinon) in my plan. I do not use steroids, in part due to its adverse effects with my diabetes, but also because long term use of them brings other problems, as you note. I can suggest you acquaint yourself with the consequences of long term steroid use, and discuss this, along with possible alternatives for your plan.
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Just a heads up Price, I saw my Neurologist a couple of weeks ago and after further discussion I (we) decided to stop the Infusions, didn’t feel any different before or after treatments and ween off the Prednisone and start Cellcept. Hopefully this course will allow same mobility, if not better, and try to get back to my somewhat normal weight.
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My experience is IVIG can take some months to reach full effectiveness @ronlisjack. Since you gave it 6 months without seeing improvement, I’m glad you and your neurologist are moving to adjust your treatment plan. Let us know how Cellcept works for you!
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