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DearAshleyJade Sun May 27, 2018 03:09 PM

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.

DanL Mon May 28, 2018 01:36 AM

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.

Cheryl C Fri Jun 1, 2018 02:38 AM

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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