Hello everyone, I'm in a bit of a quandary. I'm interviewing for a new job that requires up to 50% travel. I'm on biweekly infusions of Privegen, and I was wondering if anyone else has this kind of travel schedule and is it workable with this syndrome. Also is anyone aware of infusion centers open on the weekends. Thanks Jeff

Hi Jeff I guess no one knows for sure but in my case I am pretty sure that a combination of long air travel, exercise and probably stress caused my events. I am now being treated with Kiovig and all has been good since starting the treatment. I have returned to occasional air travel (some of it very long distance such as Australia to Europe and US) but certainly not as regularly as 50%. For long travel I make sure I get a flat bed seat, relax and don't exercise. I also make sure I monitor my Hg levels. Probably doesn't help but it is my experience. Warren

Thanks Warren, I appreciate it.

Jeff, I do some travel as well - been to Europe a couple of times since on IVIG and travel in the U.S. but not as much as what you are saying. I was very nervous prior to IVIG. But since being on Privigen and now Ocatagam every 4 weeks, I have had no issues whatsoever. In regards to long flights, I wonder if dehydration is as much a problem as anything. I sat next to pilot once on an overseas flight and he talked about drinking 12 oz of water per hour and still not having to go to the restroom during the entire flight. The air is so dry up there, according to him, and you don't realize how that can affect your body. In regards to weekend infusions - I have continued to ask at my treatment center about weekends...evenings or at home infusions and they seem to be out of the question. Pretty much 7:30 - 5:30; Monday to Friday is all they will do. Good luck with your decision. Jobs, family, and mental health are all a big part of dealing with this condition, but we don't talk about them a lot. We probably should, as it may be helpful as well.

Excellent, thank you for the response Barney.

Hi Jeff I am collecting all the facts that have occurred with me over the last year and will soon post it. In short, I have had some trouble with the CLS. But my troubles may help you. To answer your question, yes there is an infusion open on the weekends. It is a home infusion. I like the home infusion because I can schedule it at my convenience. This should help you with travel. I also went back to 2 days back to back instead of every 14. this would help the travel situation as well. I have been doing home infusion for over 2 years. I have had no problems with the home nurse, insurance or pharmecy. What my Doctor and Druey found is that my Ig levels of the IVIG dropped below normal levels. After a lot of testing on 28 and 14 day intervals, I went to IVIG every 21 days. Give me a call if you want to discuss this. I am doing great now. The Doctor is concidering me for traveling for work again, just not any international. Walt

Jeff and Walt, thought I would pass this along due to your concerns about travel - Airmed.com - even though you may already be aware of it. I have subscribed to this for my entire family since my diagnosis. I have never had to use it, and question if I should continue it or not. It has been great for peace of mind, when I travel. The reason I may not re-apply is that so far I have had no issues since being on IVIG and the other reason is that, I am wondering if it is safer to just stay in a local hospital and have them confer with my doctors back here in NC vs being flown back home via Airmed? But overall, I do like having this option available knowing I have SCLS. For $265 per year, I like having the assurance. If I am travelling on business, my company may cover this....but I am not sure. They may say I should stay in a local hospital and fly back when healthy enough. I like the idea of having this and being able to make the decision myself knowing that cost is not an issue. Here is a link; http://airmed.com/Individual-Plan.aspx

Hi Guys, my job involves regular long-haul flights to Europe and Asia, including visits to remote areas and 3rd world countries. I se the last update to this topic is 9 months old. I was diagnosed with SCLS 14 months ago and with the exception of last month when I had 2 episodes because I missed 2 treatments of my IVIG. Since then I am back on the IVIG and don't expect any more issues. I would appreciate any updates concerning your views on the situation.

Him Barney, is AirMed anly in the US? I am in Australia and it seems they used to be here but not any more.

Hi Gene, I am a recent Oz case, and obviously travel becomes an issue. I have always used Amex to book my flights, and they include travel insurance... But have not really had to challenge them. John Melbourne

John, how often do you travel and is it long-haul. Do you have any preparation that you do before a trip. I've flown long haul for about 20years before SCSL. Probably did about 20 flights a year. Had a few flights since (longest 6 hours) without any problems. How about you?

Hi. I am an Australian and was first diagnosed in May 2011. However my first attack was some 10 years earlier. My hospital and I lobbied for and were successful in having IVIG approved by the National Blood Authority in Australia. I have been a very active international traveller and also very active with exercise and sport throughout my life. All of my attacks have coincided with very long international trips and high levels of exercise. Since starting IVIG I have slowly built up to long haul travel but I avoid high stress exercise or at least have rest periods between travel and exercise. I have not had a serious attack since starting IVIG. I also monitor my Hb levels with a haemacue which I find invaluable. If you would like to discuss further please let me know.

Hi Wazza and Gene, The question of travel is hard. For the past 10 years I have been doing fly-in -fly-out to remote communities.. And from Melbourne this often means more time hanging out in airports, though we have Cairns sussed. Still it means being on the go and dehydrating for 12 to 14 hours! My quandry is that I have a cruise booked for Milne Bay (PNG) next Feb. I would hate to have an attack on the Dawn Princess ( or equivalent). My first three serious attacks took place over 7 weeks, so I guess since my first IVIG the other day, I have time to gain confidence. I am not a nervous Nellie, but I guess I have the responsibility to take every preventive measure. ? Take a CPAP onto the ship, make a priority appointment with the ship's Dr, take a supply of IVIG on the boat.. (Have to maintain a cold chain). As far as long haul is concerned, I really don't see a need for a flight > 10 hours then using a 24 hr stop over. Flat bed, plenty of Gatorade or equivalent, hemocue and fairy dust. At least I know that I can trust the Epworth in Melbourne, Knox Private, and Maroondah. Also, I gather Canberra hospital would be switched on. Which hospitals have you tried, Gene? I thought of starting. "Trip advisor ICU", even if it means taking a laminated 5min ED sheet to all local hospitals because the question of by-pass horrifies me. What happens if all the trusted EDs are on by-pass? Any rate, I am not phased by travel of any sort as long as I can stop to hemocue every 10 to 12 hrs. No point in testing during the flight except if you are confident in self-administering steroids. Even then, just how much use are steroids in the acute attack? They may assist with capillary integrity. Perhaps Arturo or Kirk could advise? John

Hi Wazza and Gene, Last year I got fly out insurance for my Kokoda Trek from Allianz Global Assistance 1800230566 Cheers John

Hi John, all of my episodes of SCLS have centred around Logan Hospital in Brisbane, but the specialists involved are based at the Princess Alexander hospital in Brisbane. I have just received a request to take part in the research that Dr Druey is doing and I am trying to get the specialists at the PA to get more involved with the research. I will give Allianz a phone and see if they do a business travel insurance to cover all eventuallities. Can you give me some more info on the Hemocue. where to buy and cost. what consumables are needed. How often do you test?

Hello Gene, Glad to know I can now travel to Brisbane! PA and Logan! Good luck with Allianz... I can send you a simple page of my cover as a starting point if necc. The Hemocue (in Aust). starts at $1450; yet consumables upsell it to $2000+. I bought mine for about $800 from fishpond... Awaiting delivery. I intend to do daily tests until I am VERY confident. The micro cuvettes come either singly, or in 50 packs which have a use by date. I can only let you know more as I get more organised. Cheers

Hello Gene, Glad to know I can now travel to Brisbane! PA and Logan! Good luck with Allianz... I can send you a simple page of my cover as a starting point if necc. The Hemocue (in Aust). starts at $1450; yet consumables upsell it to $2000+. I bought mine for about $800 from fishpond... Awaiting delivery. I intend to do daily tests until I am VERY confident. The micro cuvettes come either singly, or in 50 packs which have a use by date. I can only let you know more as I get more organised. Cheers

I used the 50 packs until I had my baseline. Now I use the 25's which are individually sealed and have a much longer shelf life as I only use the Hemocue when I have any doubts. Having a baseline to compare to is excellent.

genecridge - sorry I missed your question a week ago or so. I went to Airmed website and not sure about outside U.S. and Canada. You may want to send an email to them or call and find out. FYI - I have dropped this since being on IVIG...might be a bad idea, but I have been been symptom free for over 3 year now so I am getting pretty confident - hopefully not overconfident with my health. If I ever go off or have symptoms again I will sign up with them immediatey. Good luck to you and good health.

Hi John and Wazza. Just about to start another new job after my idiot of a specialist at the PA in Brisbane sent my last employer a damning letter about SCLS which lost me my job. Anyway, life goes on. I am expecting to start travelling again in January and need to tKe out travel insurance for business travel. I saw that Allianz was mentioned. What was the process concerning SCLS and how do the cover it. Did you just disclose it as a pre-existing condition and how will they cover it should the worst happen. First job will be in Bangladesh for 6 weeks so I am a little bit nervous. Any advice on insurance that will cover SCLS would be appreciated.

I take my insurance through QBE but CLS is a declared exclusion. I haven't found anyone yet that accepts CLS so I would be very pleased to know if anyone finds a company that will do it. How will you be getting IVIG during the 6 weeks?

I wont be getting any treatment. I missed 2 treatments in June and July and nothing happened until 9 weeks. I will be getting a treatment just before I leave and hopefully all will be good. Dont have any choice, just have to go for it and hope nothing happens. I will keep you informed.

Hello Gene, I did a revisit to Allianz, and my reading suggests they will cover you for a premium.. The PDS is on the net. My other suggestion is to use AMEX platinum card.. They promise me that any trip booked with it is covered. Re Hemocue.... I checked my Hb every day for 3 months and (as well as doing other tests) there was nothing to indicate that I had an impending attack. (I only had one attack in the time, and none since starting 2weekly IVIG). In addition, it is my feeling that during an attack, my circulation closes down in shock, and blood is difficult to obtain so the Hb is unreliable.. Especially if you have to repeatedly squeeze your finger tip. Having spent $2000, I would not buy one again. The way to increase your time between doses is to increase the dose. 2g/kg Octagam per month gives me a certain level, which can be measured as a trough level before each infusion. You could ask your doctor whether it would work for you to increase your infusion level to max., and measure when it is wearing off. Be aware that the higher the dose the more likely are serious side effects of the treatment. John

Hello Gene, Wazza, I realise this is out of left field... To access this you need to be a member of Probus.. A worthwhile organisation... Dare I say it, but I founf older Rotarians "mouldy", and Probians far more active. Note that the onus is on your doctor to certify " fit to travel".. Not relying on all sots of weasel exclusions. "Probus South Pacific Limited is the policyholder of the Probus Travel Insurance policy which has been designed exclusively for the Probus Club members and their guests with competitive rates and coverage for pre-existing conditions1. Cover is available for travellers up to 100 years old and up to 120 days of travel. This policy is underwritten by Ace Insurance Ltd and is only available to Probus Club Members and their accompanying guest, accessing this policy is easy, simply complete the application form and submit it to our office with your fit to travel report from your doctor along with your payment. The access fee payable for the Probus Travel Insurance will depend on your age, where you are going and how long you are going for. " Cheers John

Hi John, thanks for you information. I spoke to one of the specialists at the PA about increasing the dose to allow for a longer decay of the IV and they told that because they dont know what protien is involved with the scls, they cannot do a test to measure the levels in the IV. I am so frustrated with the specialists here, everything seems to be an effort for them. They are so pessimistic it is unbelievable. My own personal experience of SCLS is that every episode that I had always followed the same identical path so I have a number of markers that tell me when I am in the cycle. The alarm bell starts to ring when my kidneys start to ache. As I mentioned previously, I missed 2 of my monthly treatments in June and July. Everything was completely good upto 9 weeks when it came back and kicked me in the butt. During the last week of the 9, I had an ache in my kidneys. I tried to combat this by drinking lots of fluids to try and ride out the storm but obviously it didnt work. I hope the idea is not too simplistic, but based on the 9 week window and the fact that my work should not take me away for longer than 6 weeks, I will try and organise my treatments so that I have one nust before I travel and as soon as I return if necessary. I will have a look today for insurance and let you know what I find.

Hi gene.. Private mail me at john.m.carson@bigpond.com.. There are a few tricks.... John