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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@colleenyoung Thank you. I’m currently on 4 Zyrtec, 2 Zantac and 1 Singulair every day. When I have a lot of hives, I will take 1 or 2 Prednisone but I have Osteoporosis so I have to be careful how much I take. I was also doing Xolair injections every 28 days but since I’m still getting hives, my doctor wants me to do the injections every 14 days, once the insurance approves it that is.
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2 Reactions@hsminc thank you for your post. This is reassuring for me as I’ve just been diagnosed with:)
@ea1 hey there! I’ve just been diagnosed with the same number as you only I’m igg lambda. How are you doing? I’m envious of your lack of worry, how do you do it?!
@kaiti hey Kaiti. Looks like you and I are the same! Any updates?
@ea1
I joined The PCROWD Study Center for Early Detection and Interception of Blood Cancers
Dana-Farber Cancer Institute. http://www.pcrowd.org/
@theadosi
Doing fine. Just live your life and don’t attribute any pain to MGUS progression. I continue to get blood test once a year and seeing the Hematologist. I also avoid reading and following MGUS Facebook or other groups where people complain about ills related to MGUS.
Got to wake up every morning and be happy and thankful !
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3 Reactions@ea1 thank you for your reply!! So far this is the only forum I am a part of. You’re not the first person that has said to avoid the Facebook groups so I will. Have you made any changes to your diet? Do you consume any alcohol? I’m just wondering if it will make a difference at all or am I making all these changes for nothing 🤷🏻♀️
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3 Reactionstry & live your best life ever. Sit present with your diagnosis and symptoms. Rest when your body needs it, eat well & exercise as tolerated.
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3 Reactions@theadosi
Hi Thea (and everyone), I have IGG Lambda and was diagnosed 2 1/2 years ago. It was a random finding that I questioned regarding IGG being elevated, which the doctor said it was nothing to worry about! My IGM and IGA were in the normal range. However, I questioned why it was high and she referred me to a Hematologist/Oncologist for further investigation. All my numbers have been stable so far. My IGG has gone up a little and my FLC ratio is low. My M-Spike was 1.1 in August 2025, down from 1.3 in January 2025.
I go in tomorrow for my 6 month panel of tests, like all of us, but I have not had a BMB as of yet, and since my numbers have been basically ok, I have been opting out of having it. Also, my new Hematologist/Oncologist Professor from John Hopkins Hospital has not been pressuring me to get this done right now. There isn't any treatment for MGUS anyway, which we know, until you progress. I am sure I have had MGUS for many, many years and did not know it. If you don't mind me asking, have you ever had a BMB done? What is your FLC ratio and your M-Spike?
It is great to be able to post on this group and get feedback! You can never have enough knowledge to help make the right decisions when it comes to your health and many other things in life that we experience along our journey!
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1 Reaction@roosa1005 hey there! My M spike was .2 G/DL. Is yours 1.1 G/L? Or 1.1 G/DL? I haven’t had a bone marrow biopsy yet but I just got diagnosed a week ago. I’m assuming they’re waiting to see what my numbers come back as in six months to see if they go up at which point perhaps they’ll order a bone marrow biopsy? I had an MRI of my back done recently as I have some lower back issues that are unrelated and they said that my bone marrow looked good. So I guess that’s good news. My free light chain ratio is .7, what about you? I agree, it is nice to have others who understand and can help ease the worry a little bit!