Folks with autoimmune arthritis

[sukhakuli]

We've been to the parks a million times, but as my disease progresses I have more difficulty. I'm being switched from Methotrexate to injectibles soon, so I had a talk with my doctor about illnesses. I already get sick more, and longer, than anyone I know. A typical cold can drag on for me for over a month. She said during cold and flu season I can stop my meds to help my immune system recover enough to get through. Has anyone done that for a vacation? I'm worried I'm going to have a flare and have a hard time getting through the parks if I'm not taking my meds. We're going in September/October, so the start of the cold & flu season. My Rhuematologist just said to do what I think it best; I have to decide if getting sick is going to be worse than the joint pain. Medically she said it doesn't matter for such a short time (we'll be therefor 10-14 days).

I have multiple joint involvement, but the ones that cause me the most difficulty are my sacro-iliac joints and my hips. The hip joints make walking hard, and the sacro-iliac make sitting hard. I don't need a mobility device, I just have pain that I grit my teeth through. But I am worried about parades and shows. Recently at Disneyland I have been skipping the parades and shows because sitting on the concrete or curb is getting to be something that I just can't do. Any suggestions, besides trying to score a bench 3 hours before a parade? lol What do you all do?

I'm not looking for a DAS or a mobility device, just real life suggestions to enjoy the parks to the best of my physical abilities.

 

[Aladora]

What about using a rollator? It could help with walking and with waiting for parades.

 

[sukhakuli]

I didn't think they were allowed at WDW?

I'm going to end up disabled and needing a mobility device one day. I know that. But I'm not ready to go that route until I have to. Silly, I know, but I want to keep moving without it as long as I can.

Maybe there are some good places to stand and watch the shows? I'm better standing than sitting because getting up and down is hard for me. Or some decent places where we can squirt in not too long before the show and get a reasonable place to watch? At Disneyland we have it down pretty good; we know some places where we can get in closer to parade or show time so I don't have to sit as long, or at all, or some stairs or benches where we can watch. Or even just some tips keeping those joints limber while touring the parks would be great.

 

[minnie mum]

Rollators are definitely allowed in the parks. I prefer to use a wheelchair. Until my knee replacement, I was in it for most of every day at WDW. For our trip next month I will still get one, but will be able to alternate between pushing it and sitting in it when I'm too sore or tired.

There are handicapped viewing areas for the parades. You do have to arrive early to secure a spot, but with the rollator or wheelchair you will be able to sit.

As for the question about suspending your medication. I've been taking Enbrel for the last several years. It does suppress your immune system somewhat, but the only time I have stopped it was for my knee surgery. I had to be off it for over 2 months, and my symptoms flared very badly. They did subside within a couple of weeks once I started back on it. Here's the catch, though. You need to be off the stuff for a while before your immune system rebuilds. Not just the week or so you will be on vacation. Can you handle that? As I said, I didn't stop it for vacations. I just was very careful with the usual handwashing/don't touch your face/don't lick the handrails precautions. And I made sure all of my immunizations were up to date.

 

[ttintagel]

My rheumatologist had me stop my Humira for my last trip, and I didn't notice that much of a difference. However, you're going in September, which is one of the highest-humidity times of the year, and high humidity is absolute murder on my joints. It's one reason I've vowed to never go at that time of year,regardless of how much better the prices and crowds are. So my experience may not be very helpful to you.

(And despite being off biologics altogether, I still ended up getting pneumonia before I left for home.)

 

[sukhakuli]

I really don't feel like I am ready for a mobility device. I can still hike several miles. I just walk with a limp and have pain every step, all day long. I try to mitigate it as much as possible, but I'm not ready to give up walking. I will, though, in the future, I guess. I asked my rheumatologist on my last visit if I was going to end up disabled and she refused to answer, so I guess that's my answer. She said to live my life as usual while I can.

We're careful about proper handwashing and try to prevent illness as much as possible. But with 3 school aged kids and a toddler it's really hard. I'm sick all the time as it is. I guess I'll have time to feel the new meds out before I get there since we have about 9 more months.

I guess I was hoping for some tips, maybe things you do to try to reduce a flare on vacation or exercises you do to try to keep your joints limber, or even stuff to not do.

I haven't noticed that my joint pain is affected by the weather at all. It seems to just flare up or go away at random. When I'm really physically active, if I sit and rest, then my joints lock up and I can't walk or move with out significant pain, and I have reduced mobility lasting for hours. Once I'm down, I'm down. WDW has so many more shows than Disneyland, that I'm worried about how I will be able to handle it. I'm worried we'll go to like Beauty and the Beast, and I will be barely able to walk the rest of the day.

 

[ksh1111]

I have RA, but also have a B cell defect, so an underactive immune system. For.example I have had chicken pox 9 times, and RSV 4 times.this.year. I hold my biologic whenever I am sick. I often hold it.when we travel, just to minimize flying with it.

If I am well I will do a dose a few days early to protect me before we travel.

I do not have good luck with parades, cannot sit or stand that long, but I try to catch a few minutes and be okay with that.

I have gone to First Aid to recharge for a few minutes. I have even done stretches there.

 

[ttintagel]

I've been without a mobility device. I find that LOTS of stretching helps,especially in lines or anyplace where I'm standing still for a few minutes. Sitting still on the ground for a parade is a good opportunity for me to do floor stretches, but again that may not be an option for you.

Disney has been slowly but steadily getting rid of benches in the parks over the past decade or so. It makes traffic flow and crowd control easier for them, and they'd rather have people shopping when they're not playing or eating. A good way to get around this is to make an ADR for a nice,long, leisurely lunch every day so you know you'll get a good rest. Alternately, I fin I'd rather have a couple of hours of rest and leg elevation back at the hotel during the hottest, humidest part of the day and then stay a little later at night.

Lucky you and your immune system! In addition to lots of handwashing, I also bring hand sanitizer and disinfectant wipes. Next time I'm also bringing masks for the plane and for the most crowded park days. Of course, I also have other autoimmune conditions that make me susceptible to infection, so I have to rely a little more on my inner Howard Hughes than you do.

I like my Nike Air Max sneakers, but others have recommended Skechers Go Walk. I also bring Crocs for a change. Moisture-wicking socks are good. Probably couldn't hurt to have some Ace wraps and cold/hot packs in your suitcase.

(Also consider that just having a rollator or manual wheelchair with you doesn't mean you're chained to it and have to use it all the time - you push it or leave it in stroller parking when you want to walk, and when you need a place to sit you have it with you.)'

 

[mukorasirish]

I've had RA almost 8 years now and we do Disney once a year. I've changed how I visit the parks somewhat. One thing - and I do know everyone is different - I actually became healthier on the injections. MTX is like tossing a bomb at your immune system. It just blows away what it hits. The biologics target treatment. When I stopped mtx and started a biologic I had a drastic decrease in the number of times I was sick. When I am I bounce back really quickly. I am still diligent with hand washing but I seem to be much healthier. I do try to time my injections so that I take it right after I arrive. (If I fly in on Friday I take it on Saturday) This means I am flying with my immune system somewhat stronger than right after I take the med. So far (knock on wood) I have been healthy for my trips.
As for the parks - I do everything except the parades and out door shows. Those I tend to drop by - try to find a place to lean - but could never stand for the whole thing. With the rides, I use my FP+ wisely and make a good touring plan so I can see what we want to see without my having to stand for too long.
Good luck. Hope you have fun!

 

[sukhakuli]

Thanks for the tips!

ttintagel, thanks for the shoes ideas. I tend to need stiffer shoes, I actually can't wear Nikes anymore. I only wear Keens. The larger toe box and stiffer sole keep my toes and achilles happy. I have to keep myself constantly moving so my joints don't lock up, so I'm like dancing and fidgeting all the time. And then once I sit down, I just stagger around for the rest of the night. Funny story, we were at Disneyland, and resting in the afternoon. My toddler started to get in to something in the hotel that he shouldn't get in to, so I jumped out of bed like I used to do, and my joints couldn't take it and I collapsed on the floor, lol. I kind of flopped around like a fish for a while until my husband helped me up. So embarrassing. I do yoga daily to try to keep my joints as flexible as possible. It doesn't seem to help. Or maybe I'd be even worse without it...

mukorasirish, my RA wants me on the injectibles, but my insurance requires doing the methotrexate first. I've been putting off upping the meds for a while, I guess I was still in denial that I'm not doing OK. I'm limping and staggering around like I'm in my 80's and I'm only in my 30's. I can't lift my feet anymore, so I shuffle when I walk, and then fall if the ground isn't flat. It puts a cramp in my hiking abilities. Thankfully WDW is mostly paved and flat.

 

[ttintagel]

Oh, yeah, getting up in the morning is fun, isn't it? I have to do the stretches for a while before I attempt to walk any farther than the bathroom.

My rheumatologist had me on both Humira AND a low dose of methotrexate - he says most of his patients take both rather than one or the other. I stopped both a week before my last trip, and resumed them once I was completely over the pneumonia. (I get so many infections it seems I'm off them more than on.)

Another thing to think about is the shower - if you don't get an HA room you may want to request a shower chair. The one I got from POP was fine, but other people have said theirs were rickety and preferred to buy one to bring with them or have it shipped to the resort. That's another thing that, even if you don't need one at home, can be a lifesaver under the unusual conditions at WDW.

 

[Simba's Girl]

This will be our 3rd or 4th time since my RA diagnosis when we go in August. AND we're driving from MA.

I don't have much involvement in my legs/hips, thank goodness but I do have some in my feet. Most of my involvement is in my arms/wrists. I was diagnosed 8 years ago.

I have been through 2 anti-TNFs, MTX, and 2 different infusion meds before finally finding Xeljanz (and Arava and Etodolac) which has worked wonders for me for almost 2 years now (knocking wood). Try and optimize your treatment before you go, consider prednisone burst treatment just for your vacation(my doctor is more than willing to write a script for this, so ask!), NAPS and rest times are your friends, be flexible and seriously consider the need of renting an ECV or wheelchair, if you need them they are there, if not well bonus! Anti-bacterial gels and wipes before you eat, always. Don't try and do a commando trip, utilize FP+, use shoes that are supportive and work for you (no cheep flip flops!) Also, any supportive devices that you typically use, braces, heating pads etc...

Honestly though, my most important tip is to rest when your body tells you to, even if it means meeting up with your family at a later time.