Lupus and Vacation Travel

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Regular Member

Date Joined Aug 2011
Total Posts : 52
   Posted 8/21/2011 5:45 PM (GMT -6)   
nono  I have SLE -- recently diagnosed.  We have a three week vacation planned, visiting cold places like Iceland and Greenland.  We've canceled two vacations this year because I was afraid to be away from my doctors.  Even though my labs have a lot of low numbers, my hematologist said GO!  I had a pneumonia shot a few weeks ago to make sure I was protected.  However, with a WBC of 2.5, I am still a bit weary about being so far away (I live in Florida) and in a cold climate.  Has anyone gone on vacation to cold places....and how did you do??  Our trip is three weeks long.  I'd love to hear from anyone who has traveled with Lupus and what I can expect.  Thanks!

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 8/21/2011 6:42 PM (GMT -6)   
You need to carry things to protect yourself from UVA/UVB rays. They can bounce off the snow and give to extra doses of them.
I'm a sun-sensitive and I wear broad spectrum sunscreen, UV protective clothes, UV protective head scarf that I can cover my face with, and a UV protective hat. I even carry a UV umbrella and wear UV glasses.
You may want to wear a filter mask to avoid other people's germs which are prevailent on airplanes.
My mother has a blood condition and her doctor told her when her WBC blood count is below 3 to use a filter mask in public.

Regular Member

Date Joined Aug 2011
Total Posts : 52
   Posted 8/21/2011 7:00 PM (GMT -6)   
I'm not sun sensitive in that I dont and never did have the butterfly rash.  My form of Lupus doesn't "show."  It's all systemic, with a "touch" of Sjrogens..the dry eye problem.  I was diagnosed by the extreme fatigue, bone pain, total loss of strength off and on, and abnormal labs---4 positive ANA tests and a 6.7 on the Antiscleroderma-70 (normal range 0-0.9).  I do get "internal flares" from long exposure in the sun.  The places we are traveling to will probably be quite cool.  The sun in Florida, where I live, is very strong, and I use SPF 30.  My hematologist said that my neutrophils were ony slightly below normal and he wasn't overly concerned about the 2.5 count,  It was actually better than my previous CBC, which showed a white count of 2.3!  Scary for me.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 8/22/2011 12:03 PM (GMT -6)   
Go and have fun. I'd suggest buying the good quality masks, not the papery fabric kind, which are only good until they get moist, or 20 minutes which ever comes first. And, hard as this might be... stay away from children. (Except your own tongue because their germs are family germs). Kids are germ factories. They sneeze and spew secretions and wipe their nose and suck their fingers and everything they touch, they contaminate far more than adults. Their immune system is new and developing. Adults already have years of exposure to bugs with resultant antibodies in their systems, which makes risk of exposure from adults less likely. And this is so true, handwashing is the best protection. Viruses and germs live on surfaces far longer than once believed, so when you go out in public, remember to NOT touch your face or nose, to Sneeze in your Sleeve, and use tissues as a barrier when you need to touch things. Wetness wicks contamination and germs. So avoid damp things and places. Wear flipflops in hotel rooms and showers, wash your hands for 20 seconds under warm water, (cold water chaps your hands and your skin is your body's first barrier against infections), pat dry and use lotion. Avoid hand sanitizers that foam or have alcohol in them as alcohol is very drying, and hence, cracks your skin with frequent use. And, if you hear someone coughing or sneezing, stay >12 feet away from them. Droplet secretions settle out of the air because of gravity by then. Make sure you eat well, and take your vitamins, esp. B, C, and D with you. Good nutrition is one of the best weapons  against infections. And don't let yourself get chilled. That is linked to being more susceptible to bugs you may have already been exposed to.
and Happy traveling. I'm sorry if I made you too germaphobic like I am. tongue

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 8/22/2011 12:33 PM (GMT -6)   
Hey there! I say go for it!!! I actually find that I do better in cold tempertures verses hot/humid such as FL!!
about your WBC. If you are very worried about it, ask your doctor if you can take Septra or Bactrim as a preventative to help prevent anything. I did cytoxan 2 years ago and the first time they put me on Bactrim. My WBC dropped to .8 and I never got sick and this was when the H1N1 was rampent. Now they have me on Septra for this round of cytoxan. Both times I was told to take it every Monday, Wednesday, and Friday.  
If you are super worried you can always take a mask and when you hear people hacking, sneezing, runny nose, etc you can always put it on. Just be prepared for people to stare and try to figure out why you have a mask on. Sometimes it works to your advantage because they will actually step back a few feet and not crowd you so!!! yeah Also, carry around plenty of hand sanitizer. Use it after you touch anything germs thrive on such as door knobs, ticket counters, pens, menus, etc!!!
Lupus Moderater
Prednisone, carvedilol, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Regular Member

Date Joined Feb 2010
Total Posts : 55
   Posted 9/2/2011 2:09 PM (GMT -6)   
I agree- go and have fun! I left for tour 3 weeks after getting my diagnosis. I told my docs that I'd be gone, and they were wonderful about answering questions. My MA is a Godsend- she would call or email me back right away if I was having a problem. A few months later, I went to Africa for 6 weeks. I made sure I had all my prescriptions filled (when you fly, make sure you have them in the original bottles.) I also took Prednisone, which I had only used once and hoped not to need, and pain killers just in case. Lots of sunscreen and stuff as well.

When I got sick, I decided that I could not stop living. Tell your docs you'll be out of town. Get an email address, so if you have problems, you can get answers regardless of time zones. Try to anticipate problems you'll have and take what is necessary to avoid them. Hand/feet warmers. A rice bag you can microwave. UV protection (as everyone else said.) Be prepared, but also enjoy yourself. You'll be sick forever, so you can't stop enjoying things.

Personally, I do better in the cold. When it's hot or humid, I swell and hurt like crazy. Maybe it won't be as bad as you think!
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