WDW and Immune Supression (and a hair loss question)?

[keypooh90]

Hi.

I was VERY recently diagnosed with Lupus and have been put on several meds that will suppress my immune system (Plaquenil, Prednisone, and CellCept).

I will talk with my rheumy and immunologist about what precautions to take, but if anyone has traveled while immune supressed did you take any special precautions?

Also, the Lupus has caused quite a bit of my hair to thin/fall out. Right now it's not too noticeable but it may get to the point where it is. For those of you with hair loss, did you wear hats or wigs in the parks? Or just go without anything?

Thanks!

 

[Dragonfly*Tink]

I am sorry to hear of your diagnosis. I asked a question about wigs and it looks like people are interested but no one had any responses thus far ... I leave in 1 day! So I will try to post an answer when I get back.

I have cancer and lost my hair after a chemo round and it has now grown back to about an inch - I am not yet comfortable going without my wig so I will try to wear one as long as possible as they can get really hot to wear. I cannot wear in the pool so that will be a little test for me! Lol! My biggest concern is wearing on some rides.

I am also doing a chemo round today and leaving for Disney tomorrow so my immune system is going to be suppressed as well. The advice I received from the cancer clinic are: wear a mask on the plane because it is canned air and you are breathing in everyone's germs - it will help and the biggest thing is to wash your hands ... a lot.

Everything is dirty but you cannot live in a bubble. I plan on doing the following:

- bringing Clorox wipes and wiping down the room from the door handle, tv remote, phone, toilet, etc. and wearing slippers in the room
- bringing some clorox wipes to the parks with me to wipe down the items like the "shooting stick" at Toy Story Mania, the Buzz Lightyear blasters and the holding bars like on the Haunted Mansion, etc.
- I have a huge bottle of hand sanitizer and 1 little bottle that I will refill - I plan to wash my hands often - especially after touching things
- use the toilet seat covers too ...
- paper money and coins are the dirtiest things on earth so use a bank or credit card

That's all I can think of so far.

A little long winded but once I start - it's hard to stop!

I hope you have a great trip!

 

[snorris49]

I'm sorry to hear about the diagnosis. I hope you are feeling better!
I have Crohn's disease and have been on Prednisone and various other immunosuppressents while at Disney.

I can't really add any more big tips but can say @Dragonfly*tink gave some really excellent ones. Definitely anything to clean surfaces--they are the worst!

The other thing I can say is to try to make room for some resting time. I find that when my immune system is low, I need a lot more breaks and some downtime in the hotel room. It helps recharge me and I think being more rested makes me less likely to be even more susceptible to the germs.

My hair also thinned out a lot when I was out of remission and on higher doses of prednisone. I had shorter hair and I noticed the hair loss most for me in the front by my bang-line (you could see my scalp and I constantly was losing hair). What I did was use bandanas and wear them--they didn't look too much like I was trying to hide something (which was important to me) and were comfortable. In fact, I found they were good when it was slightly hot at keeping what hair I did have out of my face! I haven't ever tried wigs before--wish I could give you some help with that.

Hope that helps!

 

[Nevada Jen]

Don'[t forget to wipe down the light swtiches and lamp knobs! They are supposed to be the most germ carrying thing in an average hotel room!

 

[mackay_j]

I have lupus and also have recurring /relapsing transverse Myelitis (MS of the spine) so I am on/off a chemo drug- cylocphosphomide and azothioprine in between that- Make sure and take it easy- do not push yourself to the end. In my case I stop before my whole body starts shaking. If I over do it then any time gained that day will be lost the next anyway. Book sit down meals (easier on the wallet if its in free dining). And make some of them during the day. I rented a scooter for the whole time- and was really glad I did. As I also had use of it for going out at night. I also felt more part of the family than I usualy do in my chair.

As others have said - be careful on any flight. Use the had sanitizers a lot - I did after every ride.


Cover up esp if on a chemo type drug. Check the GAC info to see if any of that is useful to you- It was for me.

On a brighter note- my hair thinkened back up after about 6 months of immuno supp treatment - I had a fab time and hopefuly you will too.

 

[Raenstoirm]

I would suggest you skip the wig and go with a hat (buy a cute one at disney!). Wigs are hot and expensive to replace if they get lost of damaged. Either option you choose, make sure to put sun screen on your scalp. Florida sun is mean and that tender skin hasnt seen any sun in a long time.

The "good" thing about lupus and the auto-immunes is that they do go away from time to time. I have been in remission for nearly ten years with only a minor flair up now and then.

 

[Boadicea]

Also, make sure to sanitize after you enter the park & touch the fingerprint scanner/ turnstiles as well as any time you leave transportation and have touched any railing. Wipe down anything you may be sitting near for a while because people touch things and then their faces without even realizing it all day long. If I'm at a long show and there is a touch pad or railing my children are close enough to touch, I wipe it down.

Also, change your clothes as soon as you get into your room. You can't imagine the yucky stuff you sit in and don't realize. You don't want to spread that around your room/bed.

 

[keypooh90]

Thanks everyone for all the great tips and advice. This diagnosis is so new to me and it feels like there's so much to learn! I'm definitely not going to let it ruin this trip, though. I'm looking forward to some fun!

 

[dj2]

and not that you'll have much time for tv, but condsider putting the remote control into a baggie/ziploc bag. those things are filthy.

 

[minkydog]

Everything is dirty but you cannot live in a bubble. I plan on doing the following:

- bringing Clorox wipes and wiping down the room from the door handle, tv remote, phone, toilet, etc. and wearing slippers in the room
- bringing some clorox wipes to the parks with me to wipe down the items like the "shooting stick" at Toy Story Mania, the Buzz Lightyear blasters and the holding bars like on the Haunted Mansion, etc.
- I have a huge bottle of hand sanitizer and 1 little bottle that I will refill - I plan to wash my hands often - especially after touching things
- use the toilet seat covers too ...
- paper money and coins are the dirtiest things on earth so use a bank or credit card

!

This. ^^^. My DH has severe, stage 4 lung/heart disease. He takes high doses of prednisone and methotrexate. We are pretty meticulous about keeping things clean. We've been to WDW at least 6 times since he was diagnosed and so far, so good. He has never gotten sick down there.

 

[KPeveler]

I take my own pillowcase. I dunno if that helps at all- but it makes me feel better.

 

[mamakitty]

For those with thinning hair. If you are a little thin in spots, get a taupe color eye shadow and fill in the scalp then lightly spray with hairspray. Takes away that pinkness from the scalp.You can purchase powder made for that too from places like Sally or Ulta. Makes it much less noticable. The hat suggestion is great also. I have seen on one post you can ask for extra cleaning in the room due to allergies or immune issues before you check in. We are going in 7 days will use some of the tips suggested on here as my daughter has immune issues.

 

[keypooh90]

I take my own pillowcase. I dunno if that helps at all- but it makes me feel better.

Thanks! That's something I haven't thought about!

 

[M5ward]

My husband takes CellCept for an auto-immune disease that they can't seen to put a name to. He was also on Prednisone for a couple of years. He has never taken any special precautions while at DisneyWorld (we're actually in the World now.) He is, and always has been, a frequent hand-washer, but other than that nothing special. Our daughter has Chrone's Disease and has been on Immuran for years and also takes no special precautions.

 

[Paula Sedley-Burke]

I have autoimmune diseases galore and have remicade infusions at hospital. The only thing I have experienced is urinary infections from the hot tubs and pools so now I dont go in them. I told my doctor and he said to stay out of the common pool/hot tub areas because if you have a lowered immune system you are unable like others to fend off the bacteria they contain. Nothing negative to Disney ( the resorts are very clean ) its just a lower immune system problem with common pool areas. Also put a towel down on all chairs in pool area as others have been sitting in wet clothing which breeds bacteria.

When my hair thins I go disney cap! I love picking a new cap every trip and make it part of the vacation!

 

[QueenElinor]

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.

 

[QueenElinor]

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!

 

[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. =)

 

[Paula Sedley-Burke]

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!

 

[noahcarter]

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.