hello, I had my results of my last blood test, there always is a peak of MGUS. Is there in your blood test a MGUS to ? Thank you, I am worry....

Hello Anne-Laure, MGUS indicates Monoclonal Gammopathy of Undetermined Significance. This laboratory abnormality is present in many elderly Patients (2.5% in the 60-70 age group, 4% in 70-70 years groupe, 7% in 80-90 years groupe, 20% among those over 90 years) without that we can speak of a true disease. About 1% / year of the Patients with MGUS will develop a myeloma (IgA or IgG), 1.5% will develop a Waldenström macroglobulinemia (IgM). This laboratory abnormality should be monitored 1-2 x / year. Approximately 80% of Patients with SCLS have a MGUS. Their rate of this paraprotein is often low and remains constant for years. When a SCLS-Patient receive a treatment with immunoglobulins (IVIG), the MGUS can be hidden and no longer be detected. In my case, I had a MGUS IgG kappa with a rate about 15 g / liter for 2 years. Since I had IVIG, the MGUS is no longer detected but certainly still present. I have a blood test every year to be sure that the rate do not go up and reappear again. This would mean that the MGUS turned into myeloma or other lymphoproliferative syndrome. Claude Pfefferlé

Yes, Anne-laure, I and at least 80% of confirmed SCLS patients have the plasma cell disorder called Monoclonal Gammopathy of Unknown Significance (MGUS). If you have MGUS then that may help confirm your diagnosis of having SCLS, but patients with some other rare diseases also have the MGUS. Since it is estimated that about 1% of the world's population have MGUS, and yet only about 0.0001% of them have SCLS, having MGUS is neither a necessary nor a sufficient condition for having SCLS. MGUS is relatively uncommon in young people and their prevalence increases with age, so for someone your age the chances are about 2-3%, rising to around 8% in people who are 80 years old. Most people with MGUS lead perfectly healthy lives, but every year about 1% of them go on to develop multiple myeloma or other serious plasma-cell diseases -- hence its "unknown significance." Therefore, it is a good idea for your doctors to monitor MGUS levels at least once a year from now on. In sum, treating SCLS should be your top priority, and having the MGUS should not cause you extra concern.

Perfect and clear, I totally agree with Arturo. Best regards to all members of the community. Claude Pfefferlé

hello at all, I got back to the hospital today. to Pr Amoura advices, I don't need IVIG infusion for the moment.I am a chronic capillary leak and my tree first attacks were not severe.I will have IVIG only when I have an another attack.....after, we will see.. At this time, I and my husband live in Djibouti until summer 2014, doctors let me go over there, we have a military hospital with doctors who come from Paris with IVIG in case. I am followed every 6 months because of my MGUS. I wish you a good health ,take care. Anne laure. ps : my main doctor whises one day to work at Mayo clinic....

We wish you good health!

Chère Anne-Laure, Je suis heureux que vous ayez pu rencontrer le Prof. Amoura qui vous a donné son précieux avis. Je vous adresse mes meilleurs voeux de bonne santé pendant votre séjour en République de Djibouti. Si vous avez la possibilité de nous tenir au courant de votre évolution, n'hésitez pas à intervenir sur ce forum. Cordiales salutations. Claude Pfefferlé

Thank you Arturo and Claude, of course I will keep you posted on my health during my stay in Djibouti. My husband is going to go back in France the 8th on Mach and we are going to return together the 16th on March. I hope I won't have an attack, but...... I have the aim to read you often even if we are not living in the same country we have the same desease, and we all are struggle against it. Good luck. Anne-laure.