Author Topic: Travel health risks with Sjogren's Syndrome?  (Read 1968 times)

jeffro510

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Travel health risks with Sjogren's Syndrome?
« on: August 04, 2008, 05:51:34 AM »
Hey all,
I am new here, and I am new to this syndrome as well.  I live in Birmingham, AL.  I am 38 years old and up to a year ago was very active with no issues.  I have been having issues with fatigue and various other things like joint pain, sinus problems, etc. so I got blood work done and it came back as Sjogren's.

I just found out 2 weeks ago Wednesday that I have it.  Last  Saturday (3 days after finding out about this) I left to travel to Belgrade, Serbia for work.  It was an 8 day trip and I just got back last night.  Out of those 8 days I spent 5 of them sick.  First I got a nasty sinus infection with fever and sore throat that started on Wednesday.  I had some antibiotics with me and that along with decongestants the sinus infection got better and the fever and sore throat stopped by Friday.  Saturday morning I came down with some type of stomach virus and had to travel 18 hours back to the states with stomach cramps and all that I have had to eat since Saturday morning is a few rolls and a bowl of Jello.  Needless to say, this trip has taken A LOT out of me.  Both physically and mentally.

My question is:  Does having Sjogren's put me more at risk for these types of sicknesses?  Health care over there is not an option for me, so is there anything that I can do to better protect myself?  Any drugs to take?  I am supposed to travel back next Saturday again for another week, and after this past weeks experience I am thinking of telling my company that I can not go.  I do not know enough about this yet to say either way since I haven't even had time to research it yet.  I need any help and advice that you all can give me as I am confused and need to make a decision about the up coming trip in the next few days.

Thanks in advance...

Jeffro

Pooh

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #1 on: August 04, 2008, 07:38:53 AM »
Welcome Jeffro,
The decision to go or not go rests entirely with you and your doctor.  I suggest you consult him/her to find out what steps to take to protect yourself from these type of illnesses while traveling. 

Also as you already did, take antibiotics with you and medications prescribed for the Sjogren's.  Make sure you have plenty of water, sugar free lemon hard candies, mouth products, such as Biotene products toothpaste, mouth gel, mouth wash or throat spray.  Also a saline nasal spray.   Keeping your mouth and nose moist is the first step. 

I'm sure the others will have more suggestions for you.  I would hate to see you give up your trip just because of this disease.  There are ways to be comfortable as you will find out. ;D  When you ask for help here, you will get more than you bargain for.  :D  We are a helpful bunch.

Again Welcome to the family,

Pooh

jeffro510

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #2 on: August 04, 2008, 07:49:41 AM »
Thanks Pooh,

I was thinking that the nasal spray would help.  I just got diagnosed, so right now I do not have any Sjogren's specific meds.  I don't have a Rhum appointment until October so other than the little that my GP knows about this, I have no other info yet.  It's miserable being sick, it's even more miserable to be 5000 miles away from home, 7 hours ahead, and have no English speaking health care options available to you.  Very frustrating and exhausting.  When I am sick I just want to be home in my own bed for my wife to baby me!!!! ;D

Thanks again for the suggestions.  Can I just get the toothpaste at any drug store?  Do the hard candies NEED to be sugar free?  I am a sweet junkie!!!!

Jeffro

Pooh

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #3 on: August 04, 2008, 07:59:32 AM »
I think you will find the sugar free products are a life saver when it comes to your teeth.  Sjoggies have a lot of problems with their teeth due to the lack of healthy saliva. 

I know exactly what you mean about being away and being sick.  Being home in bed with those you love sure beats a lonely hotel room 7000 miles away. 

Take care and I hope the others will have more suggestions for you.  Also you might call the rheumy's office and ask to be put on the cancellation list.  This could get you in to see him/her a lot sooner.  There are always those that have to cancel and reschedule, if you are on the list they will call you to fill in the appointment.  Sure beats waiting until October. 

Pooh

lynnmarie219

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #4 on: August 04, 2008, 05:25:40 PM »
Hi Jeffro,


I just answered on your other post under newbies.....but I do want to second what Pooh said about being put on a cancellation list....I have been moved up quite a bit when I asked to do this....it is helpful!

Also the saline nasal spray helps me as well when I have sinus problems. I also use Ayr nasal gel....but the gel is something I use more at night time and the spray I can use anytime I want.

Good luck to you and I hope you are able to go on your next business trip with good health!


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DebbiK

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #5 on: August 05, 2008, 07:51:33 AM »
Hi Jeffro,

I had to spend 2 week in Phoenix this past June and one of the things I had problems with on the flight was my eyes. I had forgotten to pack eye drops in my carryon and really suffered because of the dry air in the plane. I do think that the recirculated air is a problem for us and if anyone had an illness we're more prone to getting it. Hope you're feeling better soon.

Deb

jeffro510

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #6 on: August 05, 2008, 05:01:22 PM »
Thanks all.  I feel better health wise today, but I am still physically exhausted.  All of that travel took more out of me than I expected.  This is a strange thing this Sjogren's!!!!  I am only just beginning to understand what I am going though and what to expect to go through.  Right now it is very frustrating to me, as up until now I have been very active with no issues.  Riding motorcycles all day in any heat conditions, coaching my kids sports teams, working 12 to 14 hour days, working out for a couple of hours three days a week, none of it even affected me until now.  When I have problems climbing 15 steps to go to bed, it is very confusing and frustrating.  All of your advice and reading about what others are going through and doing about their issues will help.  It is not going to keep me on the couch, I just need to learn my limit on how much I can push myself without paying dearly later.  Anything to do about the burning muscles?  The legs feel like I climbed Mt. Everest ever time I go up the steps.  I'm thinking about getting a mountain bike and start cycling, but you need some strength and endurance to even do that...

Jeffro

irish

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #7 on: August 05, 2008, 11:34:37 PM »
jeffro, I like the name. We have a third son named Jeffrey and we always called him Jeffro.

Now, the traveling issues with Sjogrens are a burden, pure and simple. I would have a visit with your regular doc to see if your ears are ok to fly this next week. There are the nasal sprays that will help you when you have the cold/virus issues, but remember that they will also dry out your mucus membranes.

One thing you can do is get a face mask and wear it on the flight. These masks can be gotten in the hardware store 3 to a pack I believe. Also, if you can find some of the cloth ones or have your wife make you some cloth ones this will help also. There are so many germs on the airplanes that I always got sick when I flew.

Another thing you can do for your dry mucus membranes is to bring some clean wash clothes with you from home. Pour water from a bottle of water to wet down the cloth and place it over your mouth and nose. You will have to experiment to find out how to do this in such a manner that the air you are inhaling feels moist. This is a lifesaver when you are ill or feeling really dry. I also have bought cheese cloth by the yard and cut it in smaller pieces that work well for this.I pack the cloths in plastic bags so that I can even carry them with me wet. I even take these in the car as the AC or heat drys me out so bad.

Make sure to get a letter from your doctor telling what disease you have and that you need the water, eye drops, mouth gel etc so that you can present it when necessary. The airplanes are pretty strict so you will need to plan your method of getting things on the plane to make your life better. Always carry antibiotics along with you when you travel and Pepto Bismol etc.

The truth of the matter is that these autoimmune disease make us at high risk for infections. I would also ask your doc to check your immune system for low IgG and low T-cells as these can also be affected with autoimmune disease. It may give you more information that will help you with your treatment plans. Good luck. Irish ;D

P.S. I was also going to add that you might as well start moderating your life style right now so that you do not keep your body in a constant state of stress from being overtired. When you are put on Plaquenil(I would ask about this ASAP) and it kicks in you should feel better. The Plaquenil helps to control the autoimmune attack on the body. It takes 6-8 months to kick in and much of the time docs will put people on prednisone to help with the symptoms until the Plaquenil kicks in.

I hope you have time to read a lot of the threads on this site. They should answer a lot of questions for you. Also, more men are now being diagnosed with Sjogrens. I have one son who probably has it but has not pursued being diagnosed yet. Make sure to get your thyroid checked also as thyroid disease can tag along with the sjogrens. Another thing. Also, be aware that increases in stress in your life will produce "flares" or increase in symptoms.

wen.uk

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #8 on: August 06, 2008, 04:16:38 AM »
Hi there Jeffro

Sorry to hear about your recent travel trauma - and yes it is a real pain when you are ill when away from home.

Not much I can add really to the advice already given - except from now you're like a boy scout in the Uk and always have to 'be prepared'!!!  I'm sure in time you'll learn how to modify your time, activities and fatigue levels so you still feel like you can enjoy life.  It does take a bit of time and patience though in the early days - I'm still learning - as my doctor always says I'm not a very patient patient!!

Hope you're feeling a little better today.

Billydude

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Re: Travel health risks with Sjogren's Syndrome?
« Reply #9 on: August 10, 2008, 05:47:23 PM »
Hi Jeffro.   I assume you are a man?   Another one here.   I also have Sjogrens and notice you didn't mention the dry eyes and dry mouth.   I also do not have the excessive dry eyes or mouth that many of the ladies complain about.    I was part of a Sjogrens study at UCSF in San Francisco and the Doctor in charge mentioned that she sees it effect men a bit differently than woman and I wondered if there were other Sjoggies out there with SjS without the dry eyes and dry mouth.
Steve