Free light chain ratio in MGUS

Posted by ellie1955 @ellie1955, Sep 19 5:57pm

Hi,
Iam in the U.K. and was diagnosed with IGM Lambda MGUS 15 months ago. During that time my Lambda flc has risen from 27.5 at diagnosis to 55 two weeks ago. My kappa is 13 and my ratio is now 0.24. ( my labs use different ranges, so the ratio should be between 0.37 and 1.56 according to my lab) I know this is a narrower range than most. My paraprotein at diagnosis was 1g/L and is now 1.4 g/L so not much change there. I have peripheral neuropathy and itching in both legs. I had this before diagnosis. Can anybody help me please, I am so worried about progression and specifically to amyloidosis. They won’t do bone scans or bmb in the U.K. at this level. Go back again in January and dreading it. Thank you for reading. Ellie.

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singularity | @singularity | Sep 19 7:44pm

What form does your peripheral neuropathy take?

ellie1955 | @ellie1955 | Sep 19 7:50pm

In reply to @singularity "What form does your peripheral neuropathy take?" + (show)

Stabbing pains in my lower legs and ankles, but not really in my feet.

hsminc | @hsminc | Sep 20 8:49am

What are the units for your Free light chains?

IgM is usually a different type of myeloma although it progresses the same way. IgM is Waldenstrom's.

kayabbott | @kayabbott | Sep 20 10:18am

I was diagnosed with IgA Kappa Free Light Chain MGUS 8 years ago (70 yo woman). My kappa has ramped up from 20 to 320 mg/L, Kappa/Lambda is 32, and IgM is normal range at 77. My neuropathy is mostly loss of feeling in extremities; I deal with that with hobbies, using my hands and feet to increase circulation and dexterity. MGUS is scary, but it is a waiting game. Perhaps that is some of the grieving process, that there isn't much one can do but take care of yourself. ResearchGate has research papers on MGUS. I keep a food log because I have celiac (gluten), and after covid last year am sensitive to legumes, dairy, and NSAIDs. Healthy diet, exercise, occasionally screaming into pillows, taking curcumin (in case that spice helps), and escape into hobbies and interests are all important.

ellie1955 | @ellie1955 | Sep 20 6:04pm

In reply to @hsminc "What are the units for your Free light chains? IgM is usually a different type of..." + (show)

My flc are currently 55 lambda, 13 kappa, so ratio is skewed at 0.24. Very worrying.

ellie1955 | @ellie1955 | Sep 20 6:08pm

In reply to @kayabbott "I was diagnosed with IgA Kappa Free Light Chain MGUS 8 years ago (70 yo woman)...." + (show)

Good to hear that at 8 years you are still MGUS levels. Good to see your positive attitude which I struggle with.

singularity | @singularity | Sep 21 10:44pm

In reply to @kayabbott "I was diagnosed with IgA Kappa Free Light Chain MGUS 8 years ago (70 yo woman)...." + (show)

For what it is worth, remembering that everyone if different, I have only know two other people wha were confirmed to have MGUs. One lived to be 94 and the other to 102. That being so, medical advice given to get on with just living your life, is probably the best possible advice.

ellie1955 | @ellie1955 | Sep 22 7:11pm

In reply to @hsminc "What are the units for your Free light chains? IgM is usually a different type of..." + (show)

Maximum Lambda should be Is 26.5, can’t remember lower figure as it’s not really relevant to me. Kappa is 13,( max 19.5: ratio 024.

hsminc | @hsminc | Sep 22 8:08pm

The normal ranges on my blood test report are as follows:

Kappa 3.3-19.4 mg/L
Lambda 5.7-26.3 mg/L

Ratio .26-1.65

Hope this info is helpful.

ellie1955 | @ellie1955 | Sep 22 8:13pm

In reply to @hsminc "The normal ranges on my blood test report are as follows: Kappa 3.3-19.4 mg/L Lambda 5.7-26.3..." + (show)

Yes, my lambda is 55, kappa14, ratio 0.24. however my lab uses a different ratio ( it’s not freelite the one most labs use,) its called n latex and the ratio is 0.31 to 1.56 so its thank you for replying.

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