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Price and Ashley and anyone else: advice please
Hello all,
I have not been on here much As some know my sister has SCLC and LEMS. Things have not been good with her LEMS especially. She was dx with SCLC over two years ago and just recently was told it may be better to not proceed with more chemo…
But my question involves her LEMS. She has only been treated with Fridapse and cellcept (which did nothing). The Fridapse helps but not enough. Currently she is in the hospital. She aspirated and has pneumonia. She also has a large pleural effusion which has been drained but it is returning so they will put a stationary catheter in…she has been through SO much. It is even hard to write this thinking of all she has been through.
Well now since she aspirated (she has been in the hospital a week) and they did swallow studies…she has no ability to swallow with the muscles and nerves in esophagus. During the barium swallow she aspirated barium. All from her LEMS and lack of treatment options provided to her.
So after 2 years the LEMS has gotten to this point. And yesterday she was started on IVIG. Today was her second dose. Unfortunately she has an NG tube now due to nutrition and that is bothering her more than anything. I live far away and her sons are there now. The nueromuscular doctor said IVIG can help-no guarantees-but it can take 2 months to feel any real effects. I am so so concerned that she will need tube feedings until (hopefully) the IVIG takes effect.
Can anyone tell me when their IVIG started helping them after treatment was started.
I am at my wits end about all the fumbles that have been made in her care.
Any advice will help
Thank you
Mary
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8 Replies
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@sweepea32 Mary thanks for reaching out at this difficult time. Both @ashleygregory757 and I are on IVIG, and she may have additional perspective. Doing IVIG two days a month did take me several months to get up to full therapeutic effect. In a hospital setting IVIG loading could be more effective. I often read that Plasmapheresis is very effective in a crisis situation, so you might ask about this procedure to help her.
Dysphagia (swallowing problems) is a frequently reported problem with LEMS, and given the aspiration problems she’s having, protecting the airway is extremely important.
If we can offer anything further, don’t hesitate to reach out. -
Thank you Price. We will reach out to doctor to find out why she made the choice of IVig over plasmapheresis.
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Hi @sweepea32
So sorry to hear that your sister is not doing well! I am by no means an expert, but I do agree with Price. If she’s already an inpatient in a hospital, plasmaphresis may be a better option because it could have quicker results and is typically used when myasthenic patients are in a crisis.
Here’s some articles about it, which explain why it is a better method in a crisis:
-https://www.medscape.com/answers/1171206-92688/what-is-the-role-of-plasmapheresis-in-the-treatment-of-myasthenia-gravis-mg
-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4296418/
These articles were written about myasthenia gravis, but the premise is the same for all types of myasthenia.
IVIG would likely need to continue after plasmaphresis and on a long-term status to keep her stable, especially if chemo is not an option.
Please keep us updated on her progress and how she’s doing.
We’re here for you both!
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Thank you Ashley for writing back. She had IVIG -5 treatments and has had no effect yet. She is no longer a candidate for chemo… I am going to travel next week to see her and hope she is out of the hospital by then. Take good care.
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Hey @sweepea32
Of course! @pricewool and I are here for you- and your sister. I’m sorry she is still unwell in the hospital.
Were you able to ask her team about plasmapheresis?
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We asked for it but they said since IVig was already started they would not do it…
My sister is really not doing well. Thanks so much for your replies.
Mary
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@sweepea32 Mary, thanks for keeping us updated. I hope she sees improvement soon, and please keep us in the loop.
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Thank you both.
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