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How many have a history of extensive air travel?

BPerry7 Message
30 Sep 2011, 04:05 PM

SCLS Patients: I am curious to know how many SCLS patients (diagnosed or suspect) on this site have a history of extensive air travel. I'm wondering if this is a potential trigger for the initial onset of the condition in susceptible individuals. I know of 3 or 4 who have mentioned it in previous posts. Please reply to this post and let me know if this does or does not fit your profile. Thanks, Bev
aporzeca Message
30 Sep 2011, 05:39 PM

There are reports, including by some of the members of this community, that air travel can trigger an episode of SCLS. However, episodes of SCLS are most likely triggered by a combination of stress and airborne illnesses like the flu and stomach viruses in individuals that have lost a crucial -- and so far unidentified -- component of their immunity. Therefore, chances are that it is not the air travel itself, but what is in the recirculated air of an aircraft combined with the stress of travel, that may lead to an episode in susceptible individuals who are not taking a medication that works for them. It was for this reason that I stopped all air travel until I went on IVIG and my episodes of SCLS came to an end.
giraffe309 Message
30 Sep 2011, 06:56 PM

My earliest episodes were after airplane trips. I also swell when I get too hot, Eileen
carolethorn Message
30 Sep 2011, 07:58 PM

For what it's worth - my thinking on the air travel thing is this: Many people in general report swelling as a "side effect" of air travel - so it seems reasonable that with SCLS - fluid retention would be aggravated - and it seems that with SCLS - once you get that "ball rolling" - once you get that switch turned on - what happens? Million dollar question. Then you get that rebound sort of over compensation thing that happens when the switch is turned off. AND air travel lends itself to the spread of virus's for a number of reasons. People quickly traveling to and from areas all over the world in a closed cramped space - trading "regional" virus's that they have an aquired immunity to - spreading them to people from an area not yet exposed and immune. Air travel is like fast forward biology. I'd rather go to "back-to-school" night at an inner-city pre-school. (just kidding).But people who fly often and regularly, have sort of their own opportunity to test and repeat it and then conclude that their illness is caused by something other than the usual. Just FYI... But the cause and effect thing -I read an article in the Washington Post yesterday about an eleven y/o boy who developed a severe case of very sudden onset- OCD (obsessive-comp. disorder) as a result of a strep infection! According to the article the bacteria triggered an autoimmune attack on a part of his brain. The article said a long course of antibiotics "cured" it. Fascinating. But - if you think about diseases like ALS(Lou Gehrig's) or others - including probably Alzheimers. However - very interesting to me because antibiotics had, for a while, improved my condition greatly, but the benefits only lasted while I was getting them. I was on Tygasil IV on and off for a year almost. The improvement was always quick but not sustainable. Just another piece of the puzzle. Carole
Maggy Message
1 Oct 2011, 06:54 AM

Hello, Previously, when I was still in activity, I moved, in Europe and other parts of the world except in Asia and Oceania, by plane or train and I agree entirely with Arturo when he indicates that it is the recycled air which seems to be a release element of SCLS, I will add associated with a rise in ambient heat in a closed universe, what was also been confirmed to me by my doctors and put a term at my professional career. This is so true that before being hospitalized in distress following a first collapse in April 1988, it had even become impossible to me to make purchases, going to the restaurant, to attend spectacles, concerts, conferences or theatre, in short everywhere where the buildings are air-conditioned and sometimes combined with powerful lightings and the ambient noise, without after a certain amount of time a crisis of edema starting, very often begin with a very strong feeling from general faintness, smothering, swelling of all the body but especially of the ventre and strong muscular pains, followed vomiting and intense headaches, obliging me to leave immediately to the free air, to refresh me the face, the neck and the high part of the chest using ice cubes and to take 2 capsules of DAFALGAN - Paracetamol (500 Mg) with coffee (not of pure water because ineffective), in order to stop the crisis, the catch of this analgesics and antipyretic allowing seems to avoid the oscillations of pain or fever, and to then lengthen me in a fresh and calm place, under if possible medical monitoring in order to be immediately transported in a hospital if the general state had suddenly worsened, not to manage in this case: salicylated (injection or perfusion) and calcic inhibitors what allowed my survival at the time of this first hospitalization. Nevertheless the use of the DAFALGAN ® - Paracetamol (Bristol-Myers Squibb Laboratory) is to be handled with precaution because among the counter-indications: Over-sensitiveness with Paracetamol or the other components and the undesirable effects: some rare cases of reactions anaphylactic over-sensitiveness with type of shock, edema of Quincke, cutaneous erythema, urticaria, rash were reported. And to always respect a 4 hours interval between the catches (maximum amount not to exceed 4 g/jour on council of your doctor). Caution in case of grave disease of the liver and by severe impaired renal function (clearance of creatinin lower than 10 ml/min) for which the interval between two catches will be at least 8 hours. I will hope to be helpful ! Maggy
rnuara Message
1 Oct 2011, 07:38 PM

I agree with Arturo's comments concerning air travel. My job requires frequent air travel and I have taken precautionary measures when I travel. I take Advil before and after all flights and travel with a hand sanitizer. I am on medication (terbutaline and theophylline) along with fluticasone. This combination of self administered OTC items and the scripts have kept me free from viruses.
jisenhour Message
2 Oct 2011, 12:35 PM

Two air trips triggered attacks for me. One to Indiana which kept me in bed for the whole trip. One resulted in a month long stay in a Detriot ICU.
clswalt Message
2 Oct 2011, 03:16 PM

I had two yeaars of weekly leaking (2008-2009). I flew only twice in that period because my Doctor was unsure of the result. The flights made no effect on me. Before CLS, I travelled frequently abroad. Now that I am on IVIG, I would travel by air. Jeff Do you air travel at all now?
jisenhour Message
2 Oct 2011, 03:21 PM

Not yet Walt. The episode I had in Febuary scared us both. We think it's because of a weight to ivig mismatch. My ivig dosage has increased and I'm closely watching my weight. If I can get through a whole winter without an attack then we plan on doing some air travel again.
BPerry7 Message
2 Oct 2011, 04:45 PM

Many thanks to those who have replied so far. I wanted to clarify that my question was concerning any history of extensive air travel prior to the first onset of SCLS. I understand that once the first SCLS episodes have begun that air travel is a trigger for many. My question specifically relates to a history of travel prior to ever having the first episode. For example, I traveled extensively internationally for several years without a single episode of swelling or illness. However, now a short flight is problematic and an obvious trigger.
jisenhour Message
2 Oct 2011, 05:22 PM

I was in the service for 10 years that required significant domestic and international travel both by air and other modes.
WazzaACT Message
3 Oct 2011, 11:55 AM

I traveled frequently and extensively for decades both internationally and domestically (and was a private pilot) without any troubles until my first attack 10 years ago. Since then air travel is almost certainly a trigger although it is always coupled with physical activity like skiing, diving and bicycle riding.
Barney Message
5 Oct 2011, 03:18 PM

I have flown quite a lot over the years for work domestically and occasionally to Europe. Never had any issues prior to first episode a year ago. The first major episode was cold/flu/allergy related combined with dehydration/heat/extreme exercise; with no air travel immediately prior to that first event. Since that time I have flown domestically with no issues. I had a couple of minor episodes that resolved with rest and fluids over the past year. Can't tie them to much of anything other than one may have come after the flu shot(?) and another after a long, tiring week at work(?). Went on Theophylline in June after my NIH visit as recommended by Dr. Druey. My last hospital event came after that, in July following a routine colonoscopy. Both Druey and Griepp seemed to have not heard of that as a trigger, but my docs here were definitely wondering about the fluid movement and such that occurs with a colonoscopy. Now on IVIG. Have had no events - minor or major since that in July. Only headaches from IVIG. I am considering an overseas trip currently but this discussion definitely makes me rethink that idea.
carolethorn Message
5 Oct 2011, 07:09 PM

Barney . interesting about the post-colonoscopy episode. Maybe it was the preparation for the procedure that caused the episode (the bowel prep required to clean everything out the night before.) Carole T.
Ritz Message
9 Oct 2011, 11:10 PM

My attackes started went I was flying two times a week, two to three weeks a month. This was the scheduled I was on for about one year before my first attack. Rita
starfrance Message
16 Apr 2013, 01:33 PM

Hello, I would like to know how many time after having landed do your attacks start? thank you.
krogers Message
18 Apr 2013, 05:35 PM

I certainly was not a frequent flyer before having SCLC. Have not flown since. Simply too scared.
mamorris1970 Message
19 Apr 2013, 01:49 PM

I have only flown a handful of times my entire life and I'm 42. This was not a trigger for me. I think my initial trigger was when I was pregnant with my daughter and got sick with parvovirus. I got extremely sick and swelled up like a balloon. I think it was the combo of being immunosuppressed from pregnancy and contracting a viral disease. It changed something in my body because I've never been the same since. Maria
Maggy Message
23 Apr 2013, 05:53 AM

Hello, Since the diagnosis of SCLS has been done in 1988, I never travel again by plane. But, last year in May/June, after a trip in Alsace I was coming back to the South of France by the new line of LGV train which goes very fast over than 300 km/h and I was very ill by arriving in the late evening after of a little more than 6h travelling for approx. 800 km. I was afraid so as the triggers was near the same as these of SCLS. Luckily it was not as confirmed by the different analyses and tests as shown in the 5-Minute ICU Consult (thanks Arturo) made the next morning. But I was interested to learn more about of this new LGV train and its air conditioning and pressurization systems and searching by Google, I found an explanation into an article relating to asthma which referred about travels by plane and train, I never was ill before by the same trip made more slowly by TGV train . You can read more (in french) by "" Best regards to all Maggy
kimberoumayah Message
27 Apr 2013, 07:11 AM

I find this fascinating. I had my first severe swell on my honeymoon almost 22 years ago. We flew to Miami for a cruise, and every time I have traveled by plane, with the exception of trips to Mexico, I have been ill. I would never have believed that air travel could trigger an episode of SCLS. This September when we flew to Orlando for a trip to Disney was the worst. I was ill until January. Until I read this post I would have never made a connection! My only exception has been air travel to Mexico, once with my husband and once for work. I stayed well during and after both trips. I do wonder about the stress factor only because I have been ill after a few long car trips (6 hours+).
starfrance Message
27 Apr 2013, 12:09 PM

Hello, about me, I have never been sick after a trip by plane although I travel a lot. I would like to know, if for some people the weather is a trigger ( I think yes).For exemple, when you leave a hot country to a cold country , how many time after having landed the attack begins? Since last september, I 'have been living in Africa with a hot weather .When I came back in France in decembre ,two weeks after having landed I had an attack. I don't no if it was a coincidence or not? It that wy I would like to know how many time after having landed your attack begins? I need to know because I going to come back in France at the end of june !!! thank you for yours reply. take care.
Hiltjo Message
5 May 2013, 09:45 AM

Dear all, I experienced several (4-5) periods during or after being in the mountains ( cycling or skiing ). The last one intruduced à chronic persisting state of SCLS, with ongoing weekly swelling and disability to perform execise. Airplane travelling could be compared with staking at à level of 1600 mtrs attitude, but while just sitting not being very active. VEGF is problably one of the important agents of the body which play à role in SCLS. (Read Xie e.o, 2012). The accelated production of VEGF is highly dependend on hypoxemia, through HIF1alfa (hypoxemia inducable factor), so could be influenced by altitude and air plane travelling. Once being elevated, (HIF ->) VEGF problably influences cell metabolsm, and so prevents is own reduction. In that way air plane travelling could play à role in exacerbations, as well in the initiation of SCLS. In my personal situation the relation with altitude is evident. Maybe being Dutch and normally living at sea level plays à role. Others report not to experience à relation, which is intriouging. Best regards, Hiltjo
Hiltjo Message
5 May 2013, 12:44 PM

by the way: it would be interesting to know whether using oxygen masks during air plane travel could prevent attacks, but I 'm not willing to try at this moment..
Arielbatt Message
25 Aug 2019, 01:07 PM

Hello, after two years of Ivig, I made my first long plane trip (13 hours) I had already made 3 test trips (1 hour) a year ago.  All without subsequent attacks.  I'm very happy.

a todos,... después de dos años de Ivig realice mí primer viaje largo (13 horas) , ya había realizado 3 viajes de prueba en avión ( 1 hora) de prueba, todos ellos con total éxito, creo que la Ivig, cumplió con su trabajo. Estoy muy contento de sentir que mis limitaciones son menores.