Hello to the whole community ! 
Since a diagnosis made in 2011 (following a first minor attack in summer 2010 + two major attacks in November 2010 and March 2011 *), I received IVg treatment over 2 days every month then every 2 months then every 3 months (in 2018).
But having experienced relapses repeatedly, the protocol is again every 2 months.

IVg treatment has so far been well tolerated.
But since September 2019, the reaction to treatment has changed: 48 hours days after each treatment, I have systemic crisis symptoms for a week (asthenia, myalgia).
I am not a doctor but I have the feeling that there is a kind of dysfunction in the lymphatic level. Myalgia is very diffuse and it is as if it had its source in the lymph nodes ...

I have an appointment on June 24 with my Pf Levesque to take stock. I would like him to explore the lymphatic track (important role in immunity).

I'll give you a report :-) This investigation could perhaps shed light on the gray areas of our pathology!

Thank you very much for taking the time to read me and full of courage to all of you!

* below my  ISCLS history"
1st minor crisis in summer 2010, after 2 hours of intensive cycling in the heat wave. Asthenia, difficulty breathing on exertion and myalgia for 1 month. No suspicious blood markers.

2nd major crisis in November 2010, the day after a tiring shoot: influenza +++, unbearable abdominal pain, reduced mobility. Ambulance, very low blood pressure. Direction the emergencies. No suspicious blood markers either, no edema. Then the blood pressure drops to 4. Pericarditis and acute myocarditis.
Artificial coma for 10 days under ECMO assistance.
Hospitalization for 1 month. I come out without any diagnosis.

March 2011: major crisis.
Same clinical picture with 13 kg of liquid.
Artificial coma under ECMO for 10 days again.
The. Medical staff hesitate between two diagnoses: bone marrow cancer or ... SCL!
They get in touch with Pf Anoura de la Salpetriere and inject the IVg.

Since then, IVg treatment over 2 days every month then every 2 months then every 3 months (in 2018).
But having experienced relapses repeatedly, the protocol is again every 2 monts. 

Hello Marie, I knew about the French line of groups in which the amount infused by Kg tended to drop. But not about extensions in time.  Tell us about relapses with infusions every 3 months, could you tell us about those relapses that made you return to infusions every 2 months?  Quantity, intensity, etc.  Thank you.

Ariel