Dear all, for some time now I have been seeing the possible complications that trigger the Leak, air travel, cruises, extreme cold, extreme heat, viral diseases, psychic stress, stress / physical effort, height, foods, seasonings, paintings, etc. But none of the members who mentioned these triggers was infusing IVIG. Is this so, or am I misinterpreting the information ???? I thank you all take a few moments to give me your opinion. Please, ... I think it is vitally important that we agree on this point. Greetings, Ariel Battaglia

Hi Ariel,

In my case the answer is yes I receive IVIG infusions every other Monday and the triggers that you mention in your post still have the ability to trip a Capillary Leak episode. Certain situations that will absolutely set off an episode for me are Air Travel, Extreme Heat, Viral Infections, Emotional Stress, Exercise ( excluding moderate swimming), Foods that I am sensitive to ie. Soy and in general I have noticed that fasting while I am in Capillary Leak improves my symptoms. 

I should note that although I receive IVIG infusions the amount that I receive is close to half of the recommended dose. I also have long periods where I remain in Phase One of the Capillary Leak cycle and my Immunologist believes that I may have a Chronic form of the disorder. I hope my response was helpful. 

Kimberly

Hi All,

I have thé exact same triggers and chronic presentation as you do. 

I have been treated with Terbutaline, bilastine And Spironolactone since Feb 2017.

1,5 years later, the stability it granted is starting to decrease and not only have chronic flares more often but also unending extremely painful cramps in feet, legs, abdomen and throat which would notet me sleep of extreme pain.

My doc is not excited to give IVIG since he says it’s dangerous and is presently ruling out hypercalcaemia levels to see possible complications before considering IVIG.

i didn’t know about the painting, I did have an episode while painting, do you which types of paintings and food trigger your episodes?

Thank you, greetings from sunny Barcelona!

Valeria (first severe attack: October 2016) (Non IVIG treatment: February,2017).

Hi Ariel. While my SCLS attacks did appear to trigger with physical events similar to those mentioned by you I have not had a single attack since starting the full recommended IVIG dose. Furthermore I have resumed a completely active life including exercise,travel etc etc. I can only hope that this continues. 

Warren

Hi. Same as Warren for me,had a severe attack 4 years ago and have been on IVIG every 4 weeks for about 3 and a half years. I have done most of the things you mention as triggers and have recently begun exercising quite rigorously without any further attacks. Valeria,did your Doctor specify the dangers of IVIG?

Hello, I have been on the recommended dose of IVIG every 4 weeks for almost a year and I have not had any attacks. I have also resumed air travel and light exercise as high intensity exercise was my main trigger for attacks.

Lisa

I also have been on the recommended dose of IVIG every 4 weeks for over 5 years and have not had any attacks.  I regularly exercise vigorously and travel without any issues.  My episodes were always preceded by some type of upper respiratory illness.  Furthermore, since beginning regular IVIG treatments, I have not had a cold or upper respiratory episodes.

Hello, do not know the joy that gives me the resurgence of this post, I'm a bit intrigued by the little participation that is having the forum lately, we should not lose the level of participation, do not forget that much of what little or much we have advanced these years, has to see, for the few that we are with this disease, with the information that we are passing between us.
I tell you that with many fears I have done after one year of IVIG, recommended dose, my first trip of one hour by plane, and I have been half mountain (1200m) without complications.
Kimberly, ... what is the reason why you do not have the recommended dose? For your health insurance? Or does it cause some type of allergy? Could you tell us a bit about the level of your attacks? How long do they last?
Valeria, ... What is the danger of IVIG? I ask you to share your doctor's opinion with us. I could not tell you what paintings or food but I read it in a forum post, that's why I detailed them. Could you tell us a bit about the level of your attacks? How long do they last?
Warren, I sent you at some point a private message consulting you about your air travel. I am happy with your comments, as well as with Boleyn Hammer, Lisa and Rnuara.
I also from IVIG had no colds or infections.

Greetings to. Ariel.

Hi, 

My immunologist is overly cautious with IVIG. I have never had an adverse reaction to the IVIG and I am hopeful that my immunologist will increase my dose over time. My history began with ER visits and 10 episodes of flash pulmonary edema. In 2016 I began seeing a Hematologist for absorption issues specifically iron deficiency. Each visit revealed that I was in Capillary Leak, the edema didn’t resolve and I didn’t enter phase 2 so my episodes of flash pulmonary edema disappeared and I no longer needed to be hospitalized. Now I am continually in phase one, the swelling doesn’t abate my abdomen swells putting pressure on my diaphragm making it difficult to breathe. 

Kimberly

Hi,

I also get the recommended dose. To prevent allergic reactions, they give me the Ivig (in my case 180 g) over 36 Hours and they give me in advance prednisolone, ranitin, fenistil, and paracetamol (German names, i hope you understand).That is to prevent headaches, vomiting and  other side effects. At the beginning of my treatment about two years ago I did not get these medications in advance and sometimes I had a light headache and light nausea. Once I got my dose accidentally within 12 hours. I also got a light headache and nausea.

Unfortunately the IVIG has in my case no effects on colds or other infections (wound infections).

I exercise regularly (cycling 1-3 hours, that is due to my handicaps very hard for me). Sometimes shortly after my IVIG, like yesterday.

Does  anybody know his IgG level in advance of the monthly treatment? When I can see the level in the results of my blood draw, my level is usually a little bit higher (last time: 19 g/l) than the reference range (7-16 g/l).

Bye 

Andreas

Kimberly,

I, too, have persistent leg and abdominal swelling which enhances fatigue. I receive 1g/kg divided between two sessions 14 days apart.

Susan

Andreas, my values ​​are the same as yours, and they are normal for the doctors here. I await more comments. Greetings.

Dear Arielbatt, the triggers that you mentioned seem to be correct in case of my son, extremely cold and hard excercise for a long time. But before these two trigger appeared, he had had swelling in legs with no reasons and then those swelling disappear until the first severe episode ̉̉six months later. ̣

Dear WazzaACT, I sent you a private message to ask about policy in Canada for SCLS patients. Could you please help to check it?

My son's now at adolecent age. My husband wants to stop IVIG for him as he believes that our boy will outgrow the disease, and the main reason is that it's too expensive to follow. Haizz, I really want to get in touch with some parents of SCLS kids to see how they are going on. There are only two persons I know ̣̣̣̣(Leilasmom and Maccy) whose children are still dependent on Ivig, scig now. Anybody else? If someone know their contacts, please help me to connect.  Thank you. 

Hello all,

I infuse 65grams, broken up into two doses, a month. Early on in my treatment I did have some minor leaks. My calves would swell, but it would not progress any further. I have not had even a minor leak for 2 years now, I am still on the 65g dose. I travel about 3x a year, and I am a fitness instructor/personal trainer. I teach 12 classes a week and do not have any episodes due to vigorous activity or air travel. I have not gotten any upper respiratory viruses since beginning IVIgg. I do get a sore throat every now and again, but it dissapears within a day. Every winter I worry about having an attack, because of the illnesses that I am exposed to working at a fitness facility. I do not get a flu shot, because I had swelling episodes 2 years in row immediately following the shot. My family does get the flu shot though.  Finally I have recently implemented eating the Whole30 way. I was having leaky gut syndrome and ulcerative colitis. I did not know if this was due to SCLS but I wanted to fix the issue without having to take more medication.  I found out that I have a reaction ( stomach issues, not swelling) to dairy, I feel better when I do not eat legumes, and keep gluten to a minimum. I have much more energy watching what I eat. I too am grateful to hear about everybody's experiences and learn what works and does not work with our disease. 

Hello Nhan, ... I think you do not know of cases that the disease is exceeded, ... for the moment it is considered chronic and incurable. I think of you often ... and I still think that IVIG saves our lives. I would try to find out (I believe in France) by the success that they have or not, those who handle smaller doses, how 1gr. per Kg. or up to 0.5 gr. by Kg. I think they have a good prognosis, but study the subject.

I add that I read that krogers is for years with 0.5. Maybe he can help her find out.

I have been getting IViG monthly for 4 years and 9 months and have not had an episode. If I can point to a trigger at all for the episodes I had, I would guess it was emotional stress.