[Grevillea17]

Four pelvic fractures resulting in a diagnosis of MGUS

by Grevillea17 on Tue Oct 03, 2017 8:14 pm

I am a 69 year old woman with psori­atic arthritis on lefluno­mide (Arava). Having four spon­ta­neous pelvic fractures over 6 months starting in September 2016, that were not healing satis­factorily and evidence I was not osteoporotic, I underwent parotid gland scanning and electrophoresis tests of my blood and urine. My parotid hormone result started at slightly above normal (8 pmol/L) in January 2017, but rose to 23.4 pmol/L, in August 2017. But scans showed no evidence of parotid adenomas, and a 24-hour urine test showed my calcium was less than 0.3 mmol / 24 hours. I was started on 6 monthly injections of Prolia (denosumab, Xgeva) in January 2017.

My electrophoresis tests at first showed zero evidence of paraproteins (January 2017), then 2 months later the level rose to 9 g/L (0.9 g/dL) IgA lambda in the beta region. Three months later again the number stayed stable at 9 g/L (0.9 g/dL) but no evidence of any Bence-Jones proteins in my urine.

My haematologist ordered a bone marrow biopsy and trephine, as a nuclear bone scan (February 2017) indicated I might have a lytic lesion on the right sacroiliac joint, I had anemia of chronic disease and was mildly thrombo­cytopenic. The results were mainly satisfactory except I had 5% plasma cells which were abnormal in morphology in the aspirate, The result of this is my haema­tologist has advised we wait and see what the results of electrophoresis will be in 6 months time.

[Multibilly]

Re: Four pelvic fractures resulting in a diagnosis of MGUS

by Multibilly on Wed Oct 04, 2017 10:30 am

Hi Grevillea17,

So sorry to hear about this situation.

Just how anemic are you? Note that if you actually do have a lytic lesion due to multiple myeloma (they can biopsy the lesion to verify this) and/or are anemic by myeloma standards (a hemoglobin value of >2 g/dL below the lowest limit of normal, or a hemoglobin value <10 g/dL), that would normally signify that you have symptomatic myeloma.

If you have a diagnosis of symptomatic myeloma, that would normally mean that you would start treatment, rather than take a "wait and see" approach. Also, note that if you have actually had a "nuclear bone scan" (scintigraphy), that this type of scan is not good at detecting lytic lesions and that you should instead ask for a PET/CT or MRI.

Also, under the circumstances, I wonder if it might make sense for you to discuss the option of going on bisphosphonate therapy (e.g. Zometa, etc)?

In any case, it might also make sense to get a second opinion from a different hematologist that specializes exclusively in multiple myeloma (if that isn't the case with your current hematologist) and see if that doctor also agrees with the "wait and see" approach. If you let us know where you live, folks on this site can recommend some facilities or specialists in your area.

Good luck and please let us know what happens.

[NStewart]

Re: Four pelvic fractures resulting in a diagnosis of MGUS

by NStewart on Mon Oct 09, 2017 4:31 pm

I agree with MultiBilly. It sounds more like you have active myeloma and not MGUS. Four spon­taneous fractures of the pelvis, a bone lesion on the sacrum, and anemia are all suspect for active myeloma. If you can see a myeloma specialist, it would be a good idea.

There is a type of myeloma that is known as non-secreting. That means that the person doesn't have an m-spike and doesn't have abnormal free light chain levels. It is quite rare. The only way to monitor it is with frequent MRI or CT/PET scans. Because you have no M-spike, but are anemic, have had fractures and have a bone lesion, it would seem that you should at least have the MRI and/or CT/PET scan for further evaluation.

All the best,
Nancy in Phila