Hello

this is an odd question but I have been receiving tx for 8yrs for SCLS. I receive 2ml/kg every four weeks. My triggers are viral and high intensity exercise. I have always stayed away from hot tubs or sauna for fear of triggering an attack. So hence my question of any known correlation of heat and cell leakage? 
 

Lisa

Hi Lisa,

Yes, I actually do experience symptoms when exposed to heat. Things like heating or being in warm rooms can bring them on. In the past, I couldn’t tolerate summer or natural heat at all, but thankfully now I handle it much better.

Best,

Valeria 

Hi! Yes in fact heat intolerance triggering leaks was my first symptom. I used teach 3 classes of hot yoga (40C/104F) a day but since getting chronic SLCS I can't tolerate temperatures above 20 even outside. It is slowly getting better as I'm on low dose ivig now 

Hi Lisa,

As far as I am concerned, the ambient temperature, whether high or low, has no influence on the triggering of a leak. I regularly engage in outdoor activities in direct sunlight at outside temperatures of over +38˚C, and in winter at temperatures below -15˚C, without ever having experienced a leak. Physical exercise, even very intense exercise (cycling, ski mountaineering), has never triggered a leak, regardless of the ambient temperature, and this has been the case since 2003. I have been undergoing prophylactic treatment with IVIG at a dose of 2 g/kg of body weight (70 kg / 180 cm) since 2005.
Kind regards, Claude Pfefferlé

Hi Claude,

Thank you for sharing your experience, it’s really helpful to hear how others respond in different conditions.

Dr. Druey has confirmed my diagnosis, and he mentioned that in the chronic form of SCLS, high temperatures or extreme heat can indeed trigger a leak. It’s interesting how differently the condition can manifest from one person to another.

Kind regards,

Valeria 

My SCLS was triggered by viral pneumonia, diagnosed by my physician husband and confirmed by Mayo Clinic.

My familial dysautonomia was diagnosed by Massachusetts General Hospital/Harvard Medical School.

Since regulation of body temperature, heat and cold tolerance, fluid shifts, blood pressure, respiratory rate, heart rate, gut function, etc., are autonomic functions, I have wondered whether there were a connection between the autonomic nervous system and SCLS. For example, persons with autonomic dysfunction/dysautonomia are advised to avoid high heat and to take lukewarm baths or showers.

Not necessarily a cause of SCLS, but perhaps a trigger between the two conditions.

Susan