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Tacrolimus for LEMS?
Good morning!
Lately, I’ve heard of some LEMS patients using treatments that are “outside of the box.”
Usually, treatment for LEMS consists of medications like Firdapse and Mestinon, along with IVIG or Rituxan infusions.
But now doctors are beginning to try more treatments to see how effective they may be for LEMS, especially if other therapies have failed to work for their patients.
In the past, we’ve talked about Rituxan and immunosuppressants like Cellcept and Imuran.
More research has come out in the last couple of years about Tacrolimus being used for myasthenia gravis and LEMS.
Tacrolimus, brand name Prograf, is used most commonly for the prevention of rejection in organ transplant patients, similar to Cellcept.
Have any of you tried treatment with tacrolimus (Prograf)?
If so, what was your experience like?
I found a couple of journal articles on tacrolimus for LEMS and MG if anyone is interested in learning more:
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2 Replies
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Yes, @ashleygregory757.
I’m currently taking Tacrolimus along with Prednisone and IVIG infusions for my LEMS treatment.
I was doing well just taking IVIG and Prednisone but as my neurologist slowly weaned the Prednisone my symptoms came back. He first suggested adding Cellcept but after blood work he decided to try Tacrolimus.
I think the Tacrolimus has helped a little but I’m not back to how I was when I was on the high dose of Prednisone. I have to have blood work every 4 months while taking Tacrolimus to check levels. I’m currently taking 4mg but I’m not sure how much it can be increased as long as the level remains low. I was hoping I would get a “boost” from the last IVIG treatment being on Tacrolimus but unfortunately I have not.
Thank you for the topic! I hope I answered your question.
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@morgan1028
I’m glad it is going well so far for you! I hope that with some time you will get more of a boost from the IVIG and Tacrolimus. Thank you for sharing your experience with us! Please keep us updated. Will be thinking of you and keeping my fingers crossed that you get the boost you need.
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