Hello everyone,

i was told not to travel until I have a few more IVIG treatments.  Just wondering how everyone feels about traveling with this syndrome and their experience with traveling. I have only had two treatments so far. I would appreciate any information. 

Lisa

Hi Lisa. I live in Australia and was diagnosed with CLS in 2011 after 3 very serious attacks. I have been on IVIG since then and not had another attack.

I was warned off travel, particularl AIR travel. I have carefully reintroduced travel as it is essential for my job and frankly I have had no problems.  I have also reintroduced exercise under the close supervision of my Drs. 

I am not sure what others have experienced with travel but for me it has allowed me to resume a near to normal life and continue my professional career.

I do suggest you get professional advice because it could be different for each of us but for me it is fine. 

Happy for you to contact me directly if you would like further info on how I reintroduced travel, particularl long air travel ( up to 16 hour flights) and the precautions I take.

Regards Warren 

Hi Lisa - I have been traveling on and off for about a year and a half. And have been on IVIG for about 2 years, My episodes with SCLS were relatively minor compared to many in our community, although they were frequent initially until I went on IVIG. I have had no episodes since and none while I have traveled. Initially my doctors were reluctant to have me travel, especially flying, but, after 6 months, I flew to Washington, D.C. to meet with Dr. Druey and his team and have steadily branched out since with no issues. None of my trips have been the length of Warren's - most of mine average 2 to 3 hours. I flew a great deal before SCLS but have cut back quite a bit and travel now mostly to see children and grandchildren and for the occasional vacation. Hope this is helpful to you. I'd be happy to answer any specific questions. Best, David

Hi, I’ve travel many times to and from New Zealand to Australia, three hour flights. We did do five hours from Port Douglas Australia, to Christchurch New Zealand, last year with no problems however I wouldn’t feel comfortable with any longer. 

Ruth 

Lisa, I have trouble with air travel since I became ill. I become very weak and end up in a wheelchair in order to make connections. However, it is unclear to me whether it is directly related to the SCLS, or rather, to the autonomic dysfunction [swings of low blood pressure, low/high respiratory rate, low heart rate, chills/sweats] that was triggered by the SCLS. At any rate, I have to use a travel companion and try to use the train system. Susan

Thank you for the feedback. I am nervous with the thought of travel but the longest flight would be three hours. I am hoping to travel in six months. Currently my doctors are not comfortable letting me travel.

Lisa,

The prudent thing to do is indeed for you to wait a few more months until there is a track record of IVIG working to prevent any additional episodes, so I agree with your physicians that you should postpone all unnecessary travel.

The other recommendatiom is that, ahead of any travel, you should get your main physician to write a "To Whom It May Concern" letter for you to carry with you and present at a hospital Emergency Room should you feel sick, where he/she explains that you have been diagnosed with SCLS and what should be done to you should you exhibit a case of hypotension (low blood pressure), hemoconcentration (thickening of the blood) and hypoalbuminemia (drop in albumin, a major protein) in the absence of other causes for such abnormalities.  Ideally, he/she should write that he/she should be called on their cellpone or pager and that you should be given IVIG upon confirmation of these symptoms.

Thank you for the advice. I have a protocol set up at the local hospitals upon my arrival and have a copy that I carry with me. I also have all physicians phone numbers in case of emergency.  I really appreciate your advice and comments. It is a very isolating syndrome, and I am so grateful to have found this forum. I agree to put travel on hold for a while. Than you again for your advice.

Lisa

Hello, some confirmed cases of attacks related to air travel or visits to the mountains but in treatment with IVIGS? Thanks to everyone who collaborates on this site.

No, to my knowledge there are no confirmed cases of episodes related to air travel or visits to mountains in confirmed SCLS patients receiving their recommended dose of IVIG.

Hi Lisa,

I fully agree with Arturo. I have traveled several times by plane (once visiting Arturo) without any leak.  I regularly ski mountaineering in high mountains (up to 4’000 m) without a problem. Moreover, the literature does not mention the decompensation of cases of SCLS wihle traveling with or without treatment by IVIG.

Best regards to you and all patients.

Claude

Hello again, 

I know I have said this before but I am truly thankful for all the comments and advice given in this forum. I have almost died three times in twelve months. I was only diagnosed in Nov’17. I have two children who are nine and fourteen and to think I could be gone at any time is terrifying.

I just received my third dose of IVIG and hope I never have another attack. I do hope to travel ( just a short flight) in the next few months to Florida. I find it a comfort to know others have travelled with no issue. Prior to being diagnosed I had been traveling with no issues, so I am hoping goes smoothly.

thank you again,

Lisa

Hi All. A member from Argentina sent me an email on this topic but for some reason the reply button is not working. Please PM me again and I will respond.. Regards  Warren

Hello! It was my husband, Arielbatt, I already told him to write again. Thank you

Hi, I sent the query back. Please, if you still have problems, let me know. Thank you.

Fellow Travelers,

I have come to the conclusion that my problems with air travel have probably been connected with my myasthenia gravis rather than my SCLS. Weak legs and low blood pressure. However, I continue to think that it's important to flex one's legs and walk as much as possible during travel to prevent pooling from weak capillaries and the dreaded venous thrombosis.

Susan

Dear wazzaACT, obviously we could not communicate through the message system. It would be very important if you could share your advice publicly in this Post, so that it would be useful for everyone. Personally, I thought that once I had arrived at my destination, I had to rest for the first 24 hours. Not having physical activity throughout the day. Thank you all for your participation

I have avoided any long-distance travel since I was diagnosed, but I recently decided to travel to the UK to visit my daughter. I flew from NYC to Manchester last Friday and returned two days ago, without incident. I planned the trip to return on Wednesday, since my IVIG was schedule for Friday (today). I wanted to give myself a buffer in case the flight was delayed on Wednesday.

Hello,

i am happy to report that I did travel in March, i went to Florida and stayed for 10 days. I flew back on a 4.5hr flight. I brought my bp monitor, spo2 monitor and recently purchased ember for hemoglobin monitoring as well. Everything went well and I did not have any issues. I received my IVIG on my return and currently doing well except for joint stiffness and tiredness with treatment. I have a pic line in my left arm for IV access.