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Old 12-03-2012, 07:11 PM   #16
QueenElinor
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I take Orencia, plaquenil and methotrexate and recently tapered off the prednisone, so I'm in the same boat you are. I find that it's not the viruses I have problems with- (that's what you'll pick up in the queues & on the plane). Though certainly you want to take steps to avoid catching viruses. The main problem with these drugs seems to be bacterial infection, from bacteria that people carry around normally and never have trouble with- until they become immunosuppressed.

Pay very close attention to any cuts or scrapes- be sure to avoid blisters on your feet by using moleskin. If you get any cuts or blisters cover them with a bandaid and antibacterial ointment until they're healed. If you haven't gotten the Pneumovax shot to prevent pneumonia, talk to your doctor about it. Also the flu shot, of course! Stay well-hydrated on the plane so you don't get a bladder infection. Be sure to go to the dentist at least once a year.

I have had a few problems with infections, but despite that, I can tell you that the drugs have changed my life, possibly even saved it! I would never NOT take them. However, we did cut the Orencia back to every 10 days from every week, to try to reduce the immunosuppression.
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Old 12-03-2012, 07:52 PM   #17
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I should also add that I never had to be hospitalized for any of the infections- oral antibiotics and/or good wound care took care of each one without any problems. Also, this was over the course of several years, it doesn't really happen that often!
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Old 12-03-2012, 08:21 PM   #18
eeyorefan107
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I also have Lupus, rheumatoid arthritis, and some other disorder that dries my saliva glands and tear ducts.(I can't remember the fancy name.) I currently take plaquenil, methotrexate, pain meds, and a few other meds. I went to Disney in January, and we're returning next February. I rented a scooter because my stamina isn't what it used to be. I used plenty of antibacterial wipes and hand sanitizer. I also took breaks when I needed to. I also used plenty of high spf sun block. I can't take long hours in the sun because of my meds. Stay hydrated, get rest when you need it, and take care of yourself. You'll have a wonderful time. =)
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Old 12-04-2012, 05:34 AM   #19
Paula Sedley-Burke
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Quote:
Originally Posted by eeyorefan107
I also have Lupus, rheumatoid arthritis, and some other disorder that dries my saliva glands and tear ducts.(I can't remember the fancy name.) I currently take plaquenil, methotrexate, pain meds, and a few other meds. I went to Disney in January, and we're returning next February. I rented a scooter because my stamina isn't what it used to be. I used plenty of antibacterial wipes and hand sanitizer. I also took breaks when I needed to. I also used plenty of high spf sun block. I can't take long hours in the sun because of my meds. Stay hydrated, get rest when you need it, and take care of yourself. You'll have a wonderful time. =)
Great advise!
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Old 12-04-2012, 07:34 PM   #20
noahcarter
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Hi!
I have Lupus and RA and am currently on low doses of cellcept, methotrexate, plaquinel, celebrex and others. With lupus, please remember that sun can cause flares. A big hat and high level of sunscreen is a must!

Also, like others have said, use lots of hand sanitizer and clorax wipes. Try hard not to touch your face.

Have fun! I have done at least 4 trips since being diagnosed and am currently planning one for next summer.
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Old 12-05-2012, 03:47 AM   #21
Paula Sedley-Burke
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Meant to also say if staying at a Disney resort and getting a refillable mug make sure you clean it out well. I avoid buffets and open food areas as others could have touched it. The Disney buffets tend to be ok because in the main they are behind glass or well managed by CM.
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