Monday, January 4, 2021

CAN MGUS GO AWAY?

Many in the MGUS community blithely repeat what their doctor told them about if MGUS can go away or not. They "trust their doctor"... I trust mine, but only so far. This is a new diagnosis and even the best doctors do know everything for sure. I do not blame doctors if they tell little white lies to manipulate patients into doing what is best for them. However, that does not negate the truth. 

I see why they maintain this little white lie. It is quite often the case in blood tests that there are mistakes. Particularly with tests for Mgus that can be subject to "interpretation". So they do not want patients to get a result that says MGUS has gone away and *rely* on that -- and never test again. They also do not want to tell patients the truth... that the blood tests are not perfect. Because later they may need to pretend that they are to get you to pursue treatment. 

But the facts -- via studies -- are that Mgus can be transient.

Out of 8,197 regular blood donors, monoclonal gammopathy was detected in 104 subjects (1.3%). The median age at detection was 53 years, the median monoclonal protein concentration was 0.2 g/dL and the cumulative follow-up of these cases amounted to 763 person/years. In two cases asymptomatic multiple myeloma was diagnosed within 6 months of detection of the gammopathy and in 14 cases, the monoclonal gammopathy was transient. Transient Mgus

After a three-month period of successful treatment with antistaphylococcal agents the analysis of serum immunoelectrophoresis revealed that the monoclonal protein had disappeared. Transient Monoclonal Gammopathy Induced by Disseminated Staphylococcus aureus Infection
Disappearance of the M-protein occurs in approximately 2–5% of patients with MGUS. The majority of these patients have low initial concentrations of M-protein. Disappearance of M-protein is often observed after stopping immunosuppressive treatment or initiation of treatment for other disorders such as autoimmune diseases and infections. The clinical relevance and management of monoclonal gammopathy

So why does this matter? Because saying that MGUS can never go away resigns you not to fight, not to try to get it to go away.  Doctors sort of have their legal hands tied. Their job is not to make you any worse and they must comply with the "standard of care" but that bears no relation to facts.   Is MGUS going away a frequent thing? NO. If mine went away I would insist on testing for years to insure it stayed away. But that does not mean we should lie about reality. 

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