[vix66]

MGUS to multiple myeloma when does it change?

by vix66 on Tue Dec 08, 2015 12:28 pm

Hi
This is just a quick question that I am sure has been asked lots of times, but I cant find a simple answer.

After being diagnosed with MGUS my haematologist has discharged me back to my GP.
He wants me to have yearly bloods done and doesn't need to see me again unless my paraprotein levels exceed 10 g/L or urinary Bence Jones protein >0.5g/L

Is this the normal procedure? I am in the UK where they don't try to prevent, they seem to wait until you are ill before they act. I see many people on here have all sorts of MRI's and biopsy's. I am going to see my GP next week to discuss all this and I feel I need to be informed. I also have a positive ANA and a positive Cytoplasmic ANCA Screen
many thanks

[Multibilly]

Re: MGUS to multiple myeloma when does it change?

by Multibilly on Tue Dec 08, 2015 6:51 pm

If your M-spike is < 10 g/L, then it is quite small. Therefore, getting checked annually sounds about right to me for such a mild case of MGUS. Assuming your disease progresses (which is not at all a given ), it's not as if you are going to skip the smoldering stage and go straight to symptomatic multiple myeloma - so there's not too much to worry about in the span of a year, IMHO.

I think some docs may suggest another checkup a bit sooner (let's say in 6 months) after first being diagnosed, and then move to an annual schedule if all looks good on the first 6 month checkup - but that's really up to the discretion of the doc.

[vix66]

Re: MGUS to multiple myeloma when does it change?

by vix66 on Thu Dec 10, 2015 12:40 pm

Thank you Multibilly, you are as always a wealth of helpful information. Many of us on here really appreciate your help