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Smoldering Multiple Myeloma and symptoms

Posted by maddogstormy @maddogstormy, May 21, 2025

I have had MGUS since 2021 and now have smoldering multiple myeloma. I am now feeling something new. A symptom. Like a twinging or dull aching pretty much everywhere. I am wondering if this is a bone symptom and if there any descriptions of bone pain. I have my next follow up in a week and I am concerned that I will be told I am active and have elevated to multiple myeloma.
Thanks.
Brian

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kansasjayhawk | @kansasjayhawk | 1 day ago
In reply to @maddogstormy "@kansasjayhawk Thank you that’s good. So you’re a Jayhawk fan! I had no real side effects..." + (show)
Profile picture for maddogstormy @maddogstormy

@kansasjayhawk
Thank you that’s good. So you’re a Jayhawk fan! I had no real side effects from Ivig infusions except a headache a couple of times.

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@maddogstormy Thanks. I'm considering asking for SCIG. My numbers are low for IgA, IgM, and three IgG subtypes as well as having little to no vaccine response. I'm really not excited about having to be hospitalized to get better care, especially given how may people get new infections in the hospital. I'll see what my immunologist can do to convince my insurance company to be proactive for a change.

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rimord | @rimord | 13 hours ago

Am high risk smoldering MM. Going for my second PET scan Thursday as a part of "watchful waiting." No symptoms, I guess. This disease is supposedly rare, but it seems like an awful lot of people have it.

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righty01 | @righty01 | 12 hours ago
In reply to @maddogstormy "Hi. Congratulations on beginning your treatment. For me the treatment hit my immune system harder than..." + (show)
Profile picture for maddogstormy @maddogstormy

Hi. Congratulations on beginning your treatment. For me the treatment hit my immune system harder than I expected. It helped a lot when I was given IVIG infusions which will continue until my immune system begins to function.
Fatigue was and continues to be significant.
I am finally designated CR. My bone marrow biopsy last week results are not yet complete. Although it is clear I am not yet MRD Negative.
I am describing this stage as a kind of recovery. It’s different and unfamiliar territory for me. I am shocked at how short this has been and how long it feels.
I would say I am not even sure how to talk about it or make sense of this yet.
I do think and I might even feel like I am getting better.
I hope that is helpful. I am sure every person who receives this treatment will have a different experience.
I also know that the whole team at Dana Farber is amazing. I am fortunate to be there.

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@maddogstormy
Thank you for sharing your experience. Hopefully your IVIG infusions get you feeling better soon.

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