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MDS Myelodysplastic syndromes

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Old Sun May 27, 2018, 03:09 PM
DearAshleyJade DearAshleyJade is offline
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Join Date: May 2018
Location: Florida
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IVIG for MDS

This is my first post so I'm not really sure if I'm doing this right. I had a question about IVIG. I have MDS currently in wait and watch situation after being treated for VSAA. My platelets and other counts are all over the place, drastically changing constantly. I have not needed transfusions for a few years. I was wondering if IVIG could be an option for me right now to boost my counts temporarily. Is this something that can be done? I have had IVIG before but not in this situation.
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Ashley, 20
Diagnosed with Aplastic Anemia 2011, ATG/cyclo/tacrolimus/steroids/transfusions for 2 years. Recently diagnosed with MDS (hypoplastic) and currently in wait and watch situation. Platelets jump from 20s to 50s. Hemoglobin high low to normal. ANC and white low to normal.
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Old Mon May 28, 2018, 01:36 AM
DanL DanL is offline
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Ashley,

I am not sure that I have ever heard of IVIG being utilized for treatment of MDS. It could potentially be used to boost immunity if you have low and/or defective white blood cells, but it generally would not have an impact on other cell lines.

It is a good question to ask the doctor though.

If I recall correctly, hypo-mds can respond to immune suppression (which would be opposite of IVIG) like AA can and may be another option to discuss with the doctor, along with transplant, especially since you are so young.

I am not sure where you are being treated, but getting a second opinion and concurrence of opinion on how to go forward in your situation might be a really good choice to help you set a direction that you are comfortable with.

If you are not already with an MDS Center of Excellence, you may wish to seek one out.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Fri Jun 1, 2018, 02:38 AM
Cheryl C Cheryl C is offline
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Hi Ashley

I have IVIG every 4-5 weeks. That's because at the time I was diagnosed with MDS I was also diagnosed with hypogammaglobulinaemia. IVIG doesn't make any difference to my blood counts, except for globulins of course, which it keeps at pretty much normal levels. What IVIG does do is help me to resist infections because my white cell count averages around 1.5, my neutrophils are always less than 1.0, and lymphocytes sit around 0.4.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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