[cndvdkri3]

should i have any other testing?

by cndvdkri3 on Sat May 18, 2013 8:44 am

hi, new to the forum- lots of great info!
Recently went to a rheumatologist to check for SLE (two siblings have SLE). Symptoms are face and chest rash, sores on roof of mouth, fatigue, pins and needles in legs and feet, mid back pain. SPEP shows
abnormal protein band 1- 0.3 h, IFE says no monoclonal protein present. Protein/creatine ratio 785 h ref. 21-161mg, urine protein 51 h ref. 5-24mg, absolute monocytes 191 l ref. 200-950.
Mother has extensive cancer history (cervical, lung, carcinoid, dipnech, vaginal unrelated to cervical) treated at Sloan and Moffitt. Rheumatologist said all was normal no SLE, no need to come back. Since IFE says no monoclonal protein present, is that the end of it? I'm a little paranoid considering mother's history. Thanks in advance for any help.

[terryl1]

Re: should i have any other testing?

by terryl1 on Sat May 18, 2013 9:31 am

You probably are fine since immunofixation is more sensitive than the SPEP. IFE detects the presence of but does not quantify abnormal paraproteins. However, fewer than 5 % of multiple myeloma patients have non secretory myeloma which does not appear in blood or urine. The only definitive way to know is a bone marrow biopsy. It is the gold standard for diagnosing plasma cell disorders. Only a doctor can determine whether a BMB is warranted in your case. Good luck.

[terryl1]

Re: should i have any other testing?

by terryl1 on Sat May 18, 2013 9:33 am

Sorry.....By doctor, I specifically meant a hematologist! Good luck. Terry L.

[cndvdkri3]

Re: should i have any other testing?

by cndvdkri3 on Sat May 18, 2013 12:36 pm

Thanks Terry! I forgot to say that under abnormal protein band 1 it says- interpretation possible monoclonal protein present, but you say likely not a problem since IFE says no? Also, any advice on the protein in urine?

[cndvdkri3]

Re: should i have any other testing?

by cndvdkri3 on Sat May 18, 2013 3:45 pm

Just to clarify- rheumatologist was looking for lupus and these just happened to be the results of some of the bloodwork. When I looked them up I came across multiple myeloma. With my family history I was concerned. Thanks in advance for any advice.

[terryl1]

Re: should i have any other testing?

by terryl1 on Sat May 18, 2013 3:47 pm

In order of sensitivity the blood/ urine tests, from least to most sensitive, are: SPEP, Serum IFE, UPEP with IFE and then the free light chain assay. I would go to a hematologist and discuss all of this. The protein in the urine could easily be related to something else other than myeloma or its precursors. I don't see that it was tested utilizing immunfixation. I would make an appointment. with a hematologist at a cancer center that handles myeloma cases just for your peace of mind. Good luck!

[cndvdkri3]

Re: should i have any other testing?

by cndvdkri3 on Sat May 18, 2013 4:04 pm

I did not have a UPEP, just SPEP. I appreciate all the info. and advice, thanks Terry!