I am happy to announce i finally received my first IVIG treatment.
I suffered an acute SCLS attack on May 8th, 2019, after 3 years of the initial acute episode in 2016. 3 years on which mild chronic flares kept me in constant alert.
I found myself on travels to a high altitude city (2,500 masl), whose pressure could have been the cause of the attack onset. Symptoms were acute diarrhea, extreme vomiting, painful cramps, myalgia, +4kg edema, severe dizziness, lack of breath, exhausting stomachache, long-lasting nausea, rhinitis and fainting sensation. Once at ER they found hypoalbuminemia, hyponatremia, high hematocrit and an important hypotension.
I was admitted for internal medicine care in which slow-paced fluids with sodium along with albumine and 250mg of methylprednisolone were instituted. I was discharged upon 3 days and flew back to Barcelona 2 days later. 3 days after landing in my city, the symptoms commenced turning stronger and stronger taking me back to the hospital where I still remain inpatient. I have had 3 attacks during these 10 inpatient days and finally, today Monday May 27th I finally started receiving IVIG infusions. They are presently instituting 25grs per day for 5 days resulting in 125gr for my 50kg of weight.
Moreover, I continue with my oral daily treatment with terbutaline, bilastine and spironolactone, however, throughout these 3 years, the doses have increased up to 40mg Terbutaline, 20mg Bilastine and 900mg Spironolactone (Crazy but imperative due to a high ideopathic hyperaldosteronism).
It has been 3 years that I still experience anhidrosis (lack of sweat) and amenorrhea (lack of menstruation). My doctors and I have come to the conclusion that the lack of breath I experience happens to appear when in the prodrome phase.
I would appreciate some of your insight in regards to IVIG doses and the side effects you might have experienced. It has been 3 hours I am receiving the infusion with no headache or nausea at all.
I truly hope and wish it works.
Keep fighting and learning to live with our neighbour Clarkson, my friends.