MGUS gone!: When I was first diagnosed with PMR... - PMRGCAuk

PMRGCAuk

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MGUS gone!

Karenjaninaz profile image
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When I was first diagnosed with PMR 2015 MGUS was found. Last week I consulted a respected, experienced hematology oncologist. Had a raft of tests. I also saw the results on my patient portal. The abnormal protein was not found. I asked the doctor how many times this happens in his extensive practice. He said “a couple of times a year”. He said it can come from a number of things: inflammation and illnesses.

His recommends coming in next year for the bloodwork, as it can come back, though I was low risk before.

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Karenjaninaz profile image
Karenjaninaz
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PMRpro profile image
PMRproAmbassador

That's great - and long may it last!!!

pata63 profile image
pata63

That's interesting to hear, and as PMRpro says, long may it last.

My GP had extra analysis done on my recent bloodwork because I have started to have peripheral neuropathy and a few other odd symptoms I haven't had before in my time with PMR (since mid 2018) and GCA (dx June 2024). On 10-Sep-24 a paraprotein (IgG lamba) at 3 g/L was found. First I had ever heard of MGUS, but of course now that I've heard about it I've found there are a few of us who have it. But I haven't heard of it going away before. Only an uncertain estimate of 1% to 2% per year progression to myeloma. Going away by itself does seem to fit within the general uncertainty and strangeness of MGUS.

I've got an appointment with a specialist diagnostician in early December to have a look over all of my medical history to help make sense of things and decide what next. From my reading of the technical literature so far I expect "what next" for MGUS will be annual extra analysis for paraproteins when my bloods are done. Watch and wait seems to be the general strategy.

Karenjaninaz profile image
Karenjaninaz in reply topata63

I will be going back next year for a recheck.

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