WDW and immune suppressed?

[mikesmom]

I hope someone on these Boards can give me thoughts on WDW if you are immune suppressed. I have an aggressive case of Rheumatoid arthritis and Sjogrens Syndrome. The docs have me on a couple of meds to deliberately suppress my immune system to get it under control. This is a new problem for me and I'm not quite sure how to handle WDW. We cancelled last year's vacation and this year is not looking too promising. The docs say that if the meds do the job I will be on them pretty much permanently, so it's not a case of just waiting it out.

How do you handle flying? Airplanes are notorious for circulating the germy air. I've caught colds after flying back when I wasn't immune suppressed. So no flying?

What about WDW itself? Obviously large crowds with folks who don't even know they are coming down with something. I know all about using sanitizer, but many germs are strictly airborne. What do you do?

We are DVC owners and have taken 1 or 2 trips to WDW each year - one with family/kids and one just for DH and myself (usually Food & Wine time or for our anniversary). We forfeited quite a lot of points last year when we canceled reservations when this disease got nasty. I'm sad at the thought of selling our membership because we can't travel, but I can't really see a way around it. I've canceled business trips that involved flying - can't see that I can justify the risk for a pleasure trip.

Any thoughts?

 

[jmartinez1895]

If you plan a trip try to go during the slow season. I was told that the week after Labor day to the week before Thanksgiving has the least attendance. Also when you go to the park go to guest services and explain your condition and they will give you a GAC that will help you a lot. My son has immuno issues and we carry lots of hand sanitizer, face mask and clorox wipes. He wears the mask if ther are alot of people in the line and we try not to let him touch anything. As soon as we get off the ride we use hand sanitizer and when we eat we wipe down his area with the clorox wipes.

 

[disfan07]

what meds are you on?

I'm on methotrexate for RA and eczema. I am also routinely on prednisone for asthma. Ive been on the methotrexate for about a year now and I have done WDW once and DL three times since Ive started it. Ive also flown 5 times since Ive started these meds.
Only once have I ended up in teh hospital after flying but that was because I had a sinus infection before flying....I didnt wnat to miss the trip so I flew cross country with a sinus infection....yeah...not one of my best moment.

What do you do in your everyday life?
When I talked to my rheumatologist and immunologist, they said that all I really needed to do was make sure I was my hands. They said that I dont really need to do anything different from my everyday routine.
I also always caught a cold after flying even before starting these meds. My doctors told me that for me at least, its not because of my immune system perse, its more that my asthma makes me more suceptable to catching colds at that elevation.

I will say, I catch more germs and illnesses from being on a college campus than I do from being in an airplane or in DL.

My advice is to ask your doctors what they think. I never would have gone if my doctors had told me not to be they said that they had no problem with me going to WDW or flying.

 

[Schmeck]

If you do decide to go - think about renting a car. GACs don't work for the buses, and you can get jammed together on a crowded bus.

 

[mikesmom]

I'm on Prednisone, mercaptopurine, and Plaquenil (plus a few others that don't affect the immune system). We've discussed adding Humira or Enbrel which would go even further, but so far looks like we may not have to go that far. The combo has finally kicked in and gotten the progression under control.

In everyday life I own my own business. We are out in the country and the office building is actually a wing on our house. Most of my clients are out of state and tend to communicate with me via 800 number, web and email. So it's pretty easy for me to avoid crowds, people and other sources of germs. That was not the object when we drew up the plans for the home and office combo a few years back but it has worked out to my advantage.

I won't go into gory details, but this thing was late diagnosed and gotten kind of out of hand. So, up to fairly recently the docs have been on a campaign to find out what works - we've not gotten into nitty gritty discussions on whether (for instance) a vacation trip is or is not a good idea.

I will say they have told me to "live my life" but then given me a bit of a lecture when living my life included managing a 2 day seminar for a client (2 12 hour days) or walking outside when it's 103 degrees to oversee a project. (That IS my life). I don't know what they would say about WDW and I will ask them about flying, but I'm glad there are folks here with more "on the ground" experience.

 

[Wee Annie]

Hi!

Just wanted to weigh in with our experiences. My daughter (3) is on active chemotherapy treatment for leukemia, and will be for another year. The meds she is on are taken for the express purpose of keeping her immuno-suppressed (daily mercaptopurine and weekly methotrexate, decadron, in addition to IV and intrathecal chemos given at the hospital). She is taking a wish trip this coming April with her Dr's blessings.

Do you get blood counts taken at regular intervals to keep tabs on how immuno-suppressed you are? I think unless she was severely neutropenic (absolute neutrophil count below 500), the drs would not make us cancel. Even then, precautions can be taken with masks, Purell, etc. I would suggest you get blood counts taken soon before your vacation, so that you know how vigilant you need to be when there.

We have flown with her this past year in her immuno-compromised state and not had any problems thus far. One tip someone gave me was to ask to pre-board for medical reasons, so that I could wipe down the hard seat area of her seat with anti-bacterial wipes before she boards. If someone you are traveling with could do this, it might be worth considering. You could also wear a mask in the plane if it makes you feel better (I did this with her mostly to prevent her from sticking her hands constantly in her mouth. You probably don't have the same inclinations...).

Even in her immuno-compromised state, she is able to deal with mild colds, etc. (at least if her counts have not really tanked, and are above 500). All this being said, we are going to be prepared for the possibility of taking her to a local ER if she gets sick (she has to have IV antibiotics every time she gets a fever as she is so immuno-compromised. You are probably the same?). It's just something we figure into everything, and plan for, just in case.

We are big proponents of letting her live her life as much as possible within the confines of her treatment, mostly because her drs are. They think that getting out, going on vacation, etc, will help her more than harm her in the long run.

The bottom line is, of course, that you must always ask you dr. Our drs encourage us, when we can, to get her out and about and enjoy life to the fullest (after all you never know what tomorrow may bring). Get your drs advice about your blood counts, whether they're relatively stable or fluctuate a bit, and whether they feel like this would be a reasonable thing to do. I know that, when new meds have been introduced to my daughter, her immune system often crashes before she gets used to them. Perhaps you need to make sure your body has adjusted to the meds before you go?

Good luck! I hope you get to go!

Ann

 

[kjpotter]

My daughter is on Plaquinil and Prednisone. We are planning on trip and actually are not doing anything special for her. I figure if she is going to kindergarden everyday she is exposed to just about everything that could possibly be at Disney. We are tapering off of the prednisone, so hopefully she will no longer be on it, but she is on the Plaquinil long-term.

 

[floridascgirl]

I was just diagnosed with PRA (Palindromic Rheumatoid Arthritis) 2 weeks ago. It's been 3 years of blood work and x-rays before settling on this diagnosis. The "palindromic" term is usually for RA that has mysterious flares & remissions. My symptoms are constant, but they are going with this diagnosis b/c thankfully my x-rays are still showing no joint damage.

My doctor has me taking Plaquenil and Prednisone. I'm pretty nervous about the side-effects of both medications. Studies show that Plaquenil might keep it from turning into full blown RA, so they are going to keep me on it long-term and monitor my eyes for problems. The plan was to keep me on Prednisone for 2 months, but I really want to wean off sooner. I've been reading alot about how it affects your Adrenal glands with long term use and I'm very concerned. My doctor did lower my dose to 5mg. (due to some side effects), but I'm still going to talk to her about tapering me off earlier than planned.

Ironically, all of the kids in my class are sick, my co-workers are sick and my DH & DS have colds, but I'm still holding strong!

 

[Mrsjvb]

Placquenil did nothing for me, nor did methotrexate.

I am currently on Humira alone with occasional Motrin 800s for extra fun times with aggressive fare ups. I was diagnosed at 5.. it;s been 40 years since then.

this past september we did a 7 day cruise on magic followed by 5 days in the parks.

we plan non stop flights, as early in the day as possible( less time for icky germs to settle in the cabin). the ship was plastered with disinfectant stations and the staff was VERY aggressive about having you wipe with the clorox wipes EVERYWHERE.

in the parks I just have my own personal hand sanitizer and I tend to wash my hands more often.. not just before meals or when I use a restroom.

you can use a sterile mask if you are truly concerned or at higher than usual risk. I also require a wheelchair in the parks and that can isolate you from some of the crowding situations

 

[AmyNTimmy]

Hi, I usually just rad posts but, I thought I could share my experience. I was diagnosed with RA 8 years. I also have a sister who had a liver transplant 15 years ago. As a result, both of us take actions to help prevent getting sick. Both of us have traveled to Disney. I currently am on enbrel for my RA. I have previously taken Placquenil and methotrexate while at Disney. I am lucky as for the most part it has been working.

Both my sister and I tend to wash our hands often. Neither one of us will change our vacation plans on the chance that we may get sick. That could happen just as easily at home. We do use a lot of hand sanitizer, but the biggest single action we take is to wash out hands often. You could use a mask if you felt the need. I have never used one, but my sister had no choice after her transplant. She didn't care for them and no longer needs to where them.

I have never gotten sick while traveling, but my sister has developed a cold after flying.



If either one of us gets sick, it tends to take longer to get over and usually requires an antibiotic.