First visit after psoriatic arthritis diagnosis, need advice

starsweeper

DIS Veteran
Joined
Dec 14, 2009
Messages
809
I was walking 8-10 miles a day for weightloss/general health in fall 2018 when my body suddenly locked up. I felt like I aged 20 years or more. I was initially diagnosed with fibromyalgia by my primary care doctor, then re-diagnosed with psoriatic arthritis by a rheumatologist in Jan 2019. I'm currently on Otezla and have a muscle relaxer I take sporadically at night for back/muscle pain. I'm 45 and a stay-at-home mom to 4 kids, so most days I can pace myself and my schedule. However, when we have busy weeks due to kids' activities, my husband traveling, etc. that extra effort results in a few days of constant fatigue and increased pain.

My main concerns are:
-fatigue/brain fog
-weakness with hands/wrists (feel like they are breaking with little pressure)
-horrible plantar fasciitis in right foot
-unpredictable joint pain (can feel great, then barely walk an hour later due to ankle/foot/knee pain)
-muscle and electric shock-like nerve pain
-occasional headaches from sound or smell sensitivity
-irritability when I feel pushed to or beyond my limits
-also have difficulty with stairs

I've resigned myself to using an ECV for long distances in the parks, but want to walk as much as I can. I'd love to hear your tips for dealing with any of these concerns in the park. Do you find muscle relaxers, steroids like prednisone, or NSAIDs like Aleve to provide the best pain relief from a day in the parks? I welcome any tips you may have to manage my concerns.

Thanks for your help!
 
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Wow! Very sad to hear about your situation. I would definitely try to only do 1/2 days in the parks, or if that isn’t practical then at least just do a park every other day and be sure to give yourself ample recuperative time! Best wishes!
 
I would talk to your dr about your pain meds they might want you to take something on a set schedule so that you always have something in you. but you might not need to.

a few tips for you. It is so easy to get caught up in the I am at Disney and not realize you're in pain until it is way too late ( done this more this then I care to admit) what I do is set my alarm on my phone every few hours and when it goes off I find a quiet place to go sit and think about how I am doing ( my needs are different then your but you can take a few minutes and just see if you're in pain) then I will think about what I need to do do I need to go back. to the room do I need to eat something and so on? so you might need to take something or pain or go lie down in first aid maybe use your ECV a little more or a little less.

All the parks have a first aid where you can get some OTC ( I would bring your own anyways because when you need it you will be across the park.) they have a place where you can lie down for a bit

anyone over the age of 18 can drive your ECV I would drive my friends in line so she could walk but it was close in case the line was longer or she needed it when we were in line.

and it is always better to stop before you have really hit your limit before you go too fair and you are in the hotel room for a day or two.

and have fun
 
Sorry to hear about this - it sounds like a struggle for sure. I have very bad arthritis in both knees that can somewhat vary day to day and trip to trip. I always rent an ECV at this point and if my knees are feeling ok I park the scooter in a designated area and walk. I usually walk inside stores to shop, into restaurants, and I'll walk in the que of rides that don't let me take the ECV in but I'd have to transfer to a WC (like Buzz)...IF I have a fast pass and I know the que isn't too long. So you can definitely get the ECV and park when you want - use it when you want. You can take the ECV into most ride lines (FP or regular lines). I suggest you take it with you in lines that allow it.

Your kids look old enough that perhaps the older ones can help the younger ones at this point which is good - I don't mean leave them totally alone while you leave the park but like if you go to the bathroom or what not. When my sons were 13 I'd let them split off and do stuff without me (I'd be in the park though and stay in touch - they had cell phones). That depends on a lot of factors but could be an option to let them split off and ride things and your DH take the younger kids if you need to rest.

One reason I rented an ECV initially from Buena Vista Scooters and then from Gold Mobility is the way the "tiller" works with my fingers - because I have carpal tunnel. If you can find posts by @Starwind perhaps that is the one who described it best (sorry Starwind if that wasn't you!). You might want to think about that and search for those posts - with your hand/finger joint issues it may be a huge deal for you. I currently rent from Gold and I know they have the tiller that works best for my hands - I don't know about the other companies at the moment.

I've gotten to the point that NSAIDs kill my stomach. I have gastritis and other issues that really limit my use of them - and I think taking them for so long really contributed to some of the issues I have now. So...ymmv on that but keep that in mind as you go forward. If nsaids like Aleve really help then by all means it's worth taking them short term for your trip. I agree to talk to your doctor - perhaps there is something you can take for a short term just for the trip if you find yourself in bad shape.

I also use the fast pass "refresh" method to get 4 and subsequent fast passes after we use the first 3. You might look that up on the Theme Park boards - this really helps and has worked well for me. I always suggest considering any special ticketed events like Disney After Hours or the dessert parties ... or the Early Morning Magic - these things cost $$$ but can eliminate the lines and waiting if Disney is offering them. The dessert parties can get you a nice, relaxing place to sit and have some desserts then a place to watch the evening fireworks or show. Especially if you're going at a busy time. You could also consider a fireworks cruise or the Pirates and Pals party - things that are a bit different than pounding the pavement at the parks. Of course...if your DH could get up early and get everyone there for park opening then you'll be able to do the things with less wait without paying extra.

Thank you for listening to my Ted Talk...haha! Sorry that was so long.
 

Thank you for your replies. I'm a planner and we usually tackle the parks aggressively, so it's been difficult to plan without disappointing my kids' expectations. We have 8-day park hoppers so we can have more flexibility. My older kids have cell phones and know the parks well, so allowing them to take the younger kids on rides and meet up with DH and me is definitely an option. I'll contact my doctor now about a pain management strategy for that week. DH keeps nudging me to get a wheelchair instead of an EVC because it can go in most lines, but I think that would be too much on him to push me all day.
 
Thank you for your replies. I'm a planner and we usually tackle the parks aggressively, so it's been difficult to plan without disappointing my kids' expectations. We have 8-day park hoppers so we can have more flexibility. My older kids have cell phones and know the parks well, so allowing them to take the younger kids on rides and meet up with DH and me is definitely an option. I'll contact my doctor now about a pain management strategy for that week. DH keeps nudging me to get a wheelchair instead of an EVC because it can go in most lines, but I think that would be too much on him to push me all day.
I would do the ECV they do go in a good number of ride lines and the ones they do not they have wheelchair for you to use
 
My recommendation would be to go with a scooter vs. A wheelchair. You then can keep some of your independence (go into a shop, while others ride, grab a snack while waiting). Scooters can go through most ride lines. If they are not allowed a wheelchair will be available at or near the entrance and someone could just push you through that line.

Just a friendly reminder, the average guest walks 8-12 miles per day at Disney. That is a lot of "pushing" for someone, add in the possible heat, humid and rain. It's dedication, but can definitely affect the "enjoyment" of the parks.

I would also recommend renting a,scooter from a third party vendor, so you could keep the scooter 24\7 with you. (I personally have used Gold Mobility). There are numerous third party vendors. Make sure you compare "Apple's to apples", as far as cost and extras included.
 
/
DH keeps nudging me to get a wheelchair instead of an EVC because it can go in most lines, but I think that would be too much on him to push me all day.

Nah...don't let him talk you in to this - lol! It is SO much nicer to have that independence. That way he can go and take the kids if you want to go back to the room. You can go off on your own and do things (even like going to the food court or just a "stroll" around the resort. Most lines take an ECV and if they don't they have a WC there for you to use. I can do so much more when I rent an ECV at Disney than I can do any other time - it really is SO nice to be able to go and do what I want for hours and not be in bad pain after a short time. I hope the same for you.
 
One reason I rented an ECV initially from Buena Vista Scooters and then from Gold Mobility is the way the "tiller" works with my fingers - because I have carpal tunnel. If you can find posts by @Starwind perhaps that is the one who described it best (sorry Starwind if that wasn't you!). You might want to think about that and search for those posts - with your hand/finger joint issues it may be a huge deal for you. I currently rent from Gold and I know they have the tiller that works best for my hands - I don't know about the other companies at the moment.

Yep, that was me !

This is the most thorough post I made regarding the "tiller issue": https://www.disboards.com/threads/ecv-and-arthritis-in-hands.3530929/#post-56188886

short explanation of the (throttle control) lever action (the lever is what you use to make the ECV move):

The walker ECV I rented: you hold the handle (of the tiller) with your hands, but use your thumb to push (well, I suppose technically it is a pull; either way, you use your thumb to bring the lever toward the handle which you are holding with the rest of your hand) the lever toward the handle. (so a thumbs-only motion)

The Buena Vista ECV (and Gold Mobility ECV) I rented: your fingers are what pull the lever towards the hand-holding bar. (so a whole-hand motion, that is adjustible if some fingers are misbehaving; you can get pretty creative, even using the whole hand w/o moving fingers if needed, or just one finger, etc)

Please note that while I know Gold's current tiller design (see below) I can't say whether Walker or Buena Vista are still using the same scooters that I rented from them, so don't know their tiller designs. If hands are an issue, tiller design is something to research from whatever ECV rental company you are considering.

This is the tiller design of the Gold Mobility scooters, which **for me** is the comfortable design (screenshot from GMS website):

473302
 
Among other issues, I have RA, bone spurs in my heels, and Plantar fasciitis. Today the bone spurs and PF are behaving themselves and not causing any issues, however, lots of walking, such as that found at WDW will trigger them -- the first bout of PF I had was triggered by and started at WDW (nearly ruined that trip). My RA, which is across many joints, also does not like lots of walking, nor standing, nor... you get the idea.

In order for me to "do" WDW, I need to use an ECV. I do not use one in normal life [except when visiting large zoos for many hours] nor do I use other mobility aids in normal life.

When I fly, the stiffness and pain that sets in from being seated on the plane means I need wheelchair assistance for connections and for the destination airport. I arrange that through my airline. In my early years with RA I didn't need it, but the last several it has been a necessity, unfortunately. And the couple times I have stubbornly tried to walk the connection myself it has not gone well even if I did make it to the gate. I've learn my lesson and don't try pushing it. Note that wheelchair assistance often takes MUCH longer to get from gate to gate than normal, so I ensure I have long connections, at least 2 and preferrably pushing 3 hours long, especially when clearing Customs is involved. FWIW, having a NEXUS card helps with this as it makes us eligible for priority security lines [in the US, for TSA PreCheck] which are often (but not always) faster than the normal lines as well as eligible for Nexus (Canada Customs) and Global Entry (US CBP) lines for clearing customs, which are IME always much shorter. Sometimes the wheelchair assistance messes up, so I am also prepared to walk it if needed, which means comfy clothes and shoes and an easy wheeling (4 wheel spinner) carryon and a personal item that can attach to the carryon so I have fewer things to carry. I have discovered the extended handle of the spinner carryon can act as a sort of mobility aid in a pinch.

As for WDW. The distances involved at WDW are tremendous. For example, just walking around World Showcase, WITHOUT going into any of the country pavillions, is OVER ONE MILE (nearly two km!!). Typical distances walked in a WDW day can easily be 6 to 8 miles or more. And all that walking is mixed in with a lot of standing relatively still.

Our recent trips have been a WDW resort stay, then a DCL cruise, then a WDW resort stay, with us visiting parks during only one of the resort stays, with both stays being a lot about spending time just relaxing and enjoying the resorts. Our last trip we had 3 nights AKL, then 10 nights on DCL, then 3 nights CCV. The only park we visited was one MVMCP during the CCV stay. So for that trip, I only got the scooter for our CCV stay, as I could manage the AKL stay without one because we had so much down time and could manage our days in limited chunks that were doable for me. YMMV.

So for the park visit portions of our trip, I rent an ECV from an outside vendor. My current vendor of choice is Gold Mobility Scooters. I have previously rented from Walker and Buena Vista. See my previous post about the "tiller issue". Renting form an outside vendor means I have the scooter at the resort, for the buses, as well as for the parks. If all things are equal you have two basic choices for an outside vendor: (1) Scooterbug, who is the only preferred vendor with Disney, which allows them to leave and pick up the ECV with Bell Services even if you are not there; and (2) another vendor (of which there are many choices) who must arrange to meet with you in person to pick up and drop off the scooter. There are a host of pros and cons of various vendors and such, which other threads discuss.

As for using the ECV at Disney. I have found it greatly increases my independence and makes the trip go much better. I am in a LOT less pain than not using it. I can go most of the day at a park, and it is fatigue that eventually gets me, not pain. WITHOUT the scooter, by two hours I am in severe pain, three can barely walk, and at four have to make numerous stops and sit then try walking again (in severe pain). I made the mistake once of "its only a few hours in the park" and left the ECV in the room and will never do that again, as that is when I learned just how long I can go... :-(

As others have noted, the ECV can go through almost all the ride lines. I will often ride the ECV to an "area" (e.g. Tomorrowland near the Peoplemover entrance) and "park" it (near peoplemover there is a parking area just for wheelchairs and scooters, which works great -- in other areas sometimes it means parking in stroller parking). I then walk to one or more rides depending on how I am feeling. Then I take the ECV and ride it to the next area or next ride, again depending on how that day is going. If I am having a really bad day, then the ECV is going into the ride lines with me. A really good day, and I can park by Peoplemover and do most of the rides between it and the bridge to the hub by walking.

So, I have a great deal of control over HOW I use the ECV. If I want to be walking, I walk. If I need to be riding it, I ride it. I can adjust on the fly as needed throughout the day. *I* am in control. And not dependent on someone pushing me and their energy levels etc. Also, my sister can go off and ride Space Mountain or the other roller coasters [which I can't because most rollercoasters are a good migraine trigger for me] and I can go off and do something else, or just sit and relax for a bit on my very own portable comfy ECV seat :-)

As for pain management. I find using the ECV well [and not being stubborn about it -- USE IT; and stop walking so much and use the ECV more when pain starts increasing] prevents a lot of flaring and thus pain. My complication is I have frequent migraines and am severely restricted on how much of ANY type of pain medication I can take as a result [even Tylenol]. I am also allergic to NSAIDs, which leaves me with Tylenol as my option. But I spare taking it so I have "days" available for migraine relief meds, which basically *for me* means no pain medication for RA or PF. Ice and heating pads are my friend. But getting my disease as stable as possible in partnerships with my doctor, and then doing what I can to avoid flaring it are the biggest things I can do.

Hope this helps.

SW
 
A couple of months ago, we traveled in a group of 5. My mother is 71 and although she is very active and mobile, long distances tire her out. I told her it was a waste of her energy getting tired out walking to places when she could save it for having fun after we got to places. So we bought a little folding used wheelchair for $40 and brought it along (much less expensive than renting for our 12 night trip).

While a scooter would have been rather nice from an independence perspective, the wheelchair worked well from a budget and mobility perspective. One of my teens generally took on the job to push her all day. My DS took it as a workout and often chose uphill routes etc lol. I pushed her for a couple of days too and I also liked it as a workout.

Last week, it was my turn in a wheelchair because I am recovering from a bout of mild pneumonia. We decided the folding wheelchair was more bulky than we wanted to deal with and we brought my MIL 's rollator. I would just hop up on the seat and DH would push me (I am short so could let my legs dangle comfortably with no footrest). Not as comfy as a wheelchair but the tradeoff in portability and sheer ease of folding was worth it.

Anyway, for us - while we would like a scooter, both the ones pushing and the ones being pushed had no issues with the wheelchair. All the pushers (who are in good physical shape) said they didn't find it too difficult to push, even after long, full days.

You just have to consider what works for you and your family. Just wanted to give the perspective of content wheelchair users
 
I was also diagnosed with Psoriatic Arthritis this past year (although it was 100% that it was also there on my on my trips over the past couple of years but I just pushed through the pain on those.) I was fairly lucky in that I got a fairly early diagnosis (through of all things... despite having the arthritis it took the psoriasis inside my ear to diagnose exactly what type.) With methatrexate and prescription strength Naproxen/stomach buffer --- I worked my way through things on my Dec 2019 trip with some relief (but side effects made it impossible to continue those.) There were definitely times where the pain was high. I missed doing some things because of it.

They've recently switched me to other meds for the arthritis and also the inflamation -- and they seem to be helping --- so if your current meds still give you those symptoms you need to touch base with your doctor again. I was definitely told not to stack my meds with other NSAIDS like Naproxen or Ibuprofen with my arthritis meds and the prescribed anti-inflammatory --- so definitely talk to your Rheaumatologist before stacking. They can be hard on the kidneys/liver/heart and you don't need that. My new meds seem to be working so hopefully our Dec 2020 trip will be a less painful one than 2019. Also talk to your doctor to see if physio would help you.

I guess what I'd say is to pace yourself. Understand that you'll be walking a lot (if you don't scooter it) but also that if you can do the walking then it's better to keep active and pace yourself. Give yourself the time you need to do what you want to do --- park commando won't likely work well for you anymore. For some rides it was easy peasy (TOT, Expedition Everest, Test Track, etc.. ) but when I did more cramped rides (Space Mountain, 7DMT, some Universal rides...) I needed a bit more time to recover betweeen rides. We'll definitely refine our FP's this time based on that for Dec 2020.

I made sure I had ziploc bags (to make ice bags for swollen joints) or a heating pad when the joint required blood flow/flexibilty --- you'll know which is which based on how things feel. You'll be tired from the meds/pain so pace yourself. Talk to your Rheaumatoligist and tell them you're going to WDW and will be moving/walking lots -- they should be able to adjust your meds to deal with stuff. Used the pools/hot tubs where I needed them.

The other thing I'd mention is that I initally resisted taking the anti-inflammatory regularly (didn't want to take meds I didn't need --- or so I thought) but not taking the anti-inflammatory make the joint damage worse. So now I take my anti-inflammatories regularly and my pain has seriously decreased (over just taking them when I felt pain.) The inflammation is not your friend.
 
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A couple of months ago, we traveled in a group of 5. My mother is 71 and although she is very active and mobile, long distances tire her out. I told her it was a waste of her energy getting tired out walking to places when she could save it for having fun after we got to places. So we bought a little folding used wheelchair for $40 and brought it along (much less expensive than renting for our 12 night trip).

While a scooter would have been rather nice from an independence perspective, the wheelchair worked well from a budget and mobility perspective. One of my teens generally took on the job to push her all day. My DS took it as a workout and often chose uphill routes etc lol. I pushed her for a couple of days too and I also liked it as a workout.

Last week, it was my turn in a wheelchair because I am recovering from a bout of mild pneumonia. We decided the folding wheelchair was more bulky than we wanted to deal with and we brought my MIL 's rollator. I would just hop up on the seat and DH would push me (I am short so could let my legs dangle comfortably with no footrest). Not as comfy as a wheelchair but the tradeoff in portability and sheer ease of folding was worth it.

Anyway, for us - while we would like a scooter, both the ones pushing and the ones being pushed had no issues with the wheelchair. All the pushers (who are in good physical shape) said they didn't find it too difficult to push, even after long, full days.

You just have to consider what works for you and your family. Just wanted to give the perspective of content wheelchair users


If you ever use the Rollator again, please please please be careful - most of them aren't made to be used like a wheelchair, and it can actually be dangerous. I would hate it if you got hurt by accident - it could really spoil your vacation!
 
If you ever use the Rollator again, please please please be careful - most of them aren't made to be used like a wheelchair, and it can actually be dangerous. I would hate it if you got hurt by accident - it could really spoil your vacation!

We are definitely careful :) It is true - the seat is not very deep nor are the wheels very large. Which makes it easier to get dumped. It worked for me because I am very active and even with the health issues I was dealing with, still very nimble. I paid close attention and was always ready to hop off when I saw big bumps coming. DH did dump me a couple of times but I was always ready and hopping off was simple. I agree with you that it is definitely a use with extreme caution thing - not good for anyone frail or too weak to move quickly when needed.

For our next trip, I am continuing to hunt for a used normal wheelchair for my mother. It would be much easier to push than the folding wheelchair or the rollator we have which has small wheels. My mother wasn't impressed when being pushed over bumpy terrain and preferred to walk over those sections. AK would be particularly annoying for her :)

That all said, our family has used wheelchairs for two trips now and found it to be a very viable option that is much less expensive, especially when bringing one from home. The pushers (all healthy and active folks) took it as a workout and didn't find it particularly tiring (a normal wheelchair would be even better!) and both my mother and I found it ok getting pushed. When we wanted more independence or to split up, we were mobile enough to get up and push the chair ourselves for a little while.

Just wanted to add a personal anecdote as many folks worry about tiring their family members out pushing them around all day. I was worried too and thought we would have to alternate pushers. But we didn't. We did full 12+ hr days and our pushers had no complaints. Of course life is easier without a wheelchair for all involved. But everyone still had a good time with the wheelchair too.

I do think scooters are awesome for many situations though and we have spent a lot of time poking through website shopping for a scooter. If we find the right features at the right price, we may just buy one for my mother for both home and travel :) I love reading the scooter reviews on the Dis - so helpful!
 
We also have rented from GMS — very positive experience. There really is no reason to shop it further, other outfits are equal or more expensive as the damage waiver is included with the rate with GMS.
 
I was also diagnosed with Psoriatic Arthritis this past year (although it was 100% that it was also there on my on my trips over the past couple of years but I just pushed through the pain on those.) I was fairly lucky in that I got a fairly early diagnosis (through of all things... despite having the arthritis it took the psoriasis inside my ear to diagnose exactly what type.) With methatrexate and prescription strength Naproxen/stomach buffer --- I worked my way through things on my Dec 2019 trip with some relief (but side effects made it impossible to continue those.) There were definitely times where the pain was high. I missed doing some things because of it.

They've recently switched me to other meds for the arthritis and also the inflamation -- and they seem to be helping --- so if your current meds still give you those symptoms you need to touch base with your doctor again. I was definitely told not to stack my meds with other NSAIDS like Naproxen or Ibuprofen with my arthritis meds and the prescribed anti-inflammatory --- so definitely talk to your Rheaumatologist before stacking. They can be hard on the kidneys/liver/heart and you don't need that. My new meds seem to be working so hopefully our Dec 2020 trip will be a less painful one than 2019. Also talk to your doctor to see if physio would help you.

I guess what I'd say is to pace yourself. Understand that you'll be walking a lot (if you don't scooter it) but also that if you can do the walking then it's better to keep active and pace yourself. Give yourself the time you need to do what you want to do --- park commando won't likely work well for you anymore. For some rides it was easy peasy (TOT, Expedition Everest, Test Track, etc.. ) but when I did more cramped rides (Space Mountain, 7DMT, some Universal rides...) I needed a bit more time to recover betweeen rides. We'll definitely refine our FP's this time based on that for Dec 2020.

I made sure I had ziploc bags (to make ice bags for swollen joints) or a heating pad when the joint required blood flow/flexibilty --- you'll know which is which based on how things feel. You'll be tired from the meds/pain so pace yourself. Talk to your Rheaumatoligist and tell them you're going to WDW and will be moving/walking lots -- they should be able to adjust your meds to deal with stuff. Used the pools/hot tubs where I needed them.

The other thing I'd mention is that I initally resisted taking the anti-inflammatory regularly (didn't want to take meds I didn't need --- or so I thought) but not taking the anti-inflammatory make the joint damage worse. So now I take my anti-inflammatories regularly and my pain has seriously decreased (over just taking them when I felt pain.) The inflammation is not your friend.
It’s great to hear from someone with PsA since we are rare from my understanding. My doctor and I keep going around about medication. My initial doctor in KY had me on sulphasalazine & 4 Aleve a day. My new doctor in GA said that amount Aleve would cause a heart attack and switched me to Otezla. I’ve taken in for nearly 4 months and little improvement, miss the Aleve which made me feel great. My doctor wants me on a biologic but my mother had interstitial lung disease and she and her father had aggressive cancers—2 conditions biologics can cause. I feel like I have no great options so I deal with my symptoms as best I can.
 
PsA is really a beast onto itself.... like I mentioned when I see things going bad it's my ears first (since that is where the Psoriasis hits first) so weird and even my Rheaumatologist was like this is odd but it is what is is.....

If you want to PM me feel free I'll share whatever I learn in my journey. Psoriasitic Arthritis is SO not easy. During the diagnosis I've had more blood tests than I've ever had, tried so many meds, full bone scans (since I had colon cancer 10 years ago - all good but still overwhelming), CTs, MRIs , etc...) finding a treatment that works is sooooo hard --- but you need to persevere and you'll find one.) Your Rheumatologist is definitely the one person you should be completely honest with ( no bravery no denying when you're feeling pain.) I'd always tried to minimize things since I thought I was super strong -- and I think this may have made finding the right med combo that much tougher.)

I will say this whole experience with Psoriatic Arthritus totally kicked me in the butt. There's a way to make it better and it means you keep moving and talking to your doctor -- but keep moving even if it's slower or more painful than normal. If you let it stop you .... it will. You're way more powerful than that.

Tried Sulfasalazine and it did nothing for me at all (although way less side effects) so they switched me back to Methatrexate at a higher dose... (They did want to move me to a biologic which I was adamant that I wouldn't do because of my previous cancer) -- when my PsA flares with the Methatrexate I've had the worst mouth sores I've ever experienced --- daily constant pain that I didn't even realize I could deal with -- but I did and do regularly --- but the biologic's freak me out -- so I deal with it. They've played more with the anti-inflammatory meds for me since I told them I just didn't want a biologic.
 
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They initially gave me Moviva (basically a 200mg ibuprofen with the stomach buffer twice a day). They wound up moving me to Celebrex --- helping but it seems like the side effects are pretty intimidating. I guess I'll see where it goes.

PsA really is lousy. The meds freak me out but really I just keep moving because the other options really aren't too appealling....
 
My husband has Psoriatic arthritis. He is remarkable well controlled except for last springs vasulitis incident? The condition has not returned. We are renting an ECV for my mom and a wheelchair for my son. We are hoping Ted walks more but with his autism, he gets to the point where he is done walking for a while. My feeling is that we will switch around who drives the ECV, if mom needs a break, or I do (arthritis in my big toe) or DH. We will make it work. We also tend to approach thing diffferently. We just try to enjoy the moment.
 
I am with all the others that an ECV is the way to go. For rides you cannot take it into there will be a wheelchair for transfer. I have a rental from Gold for our upcoming trip. I plan on parking it and walking when I can. I have good days and bad days so really have to play it by ear. it sounds like you could do something similar.

As far a pain management, I think its important to think about it BEFORE you are in severe pain. I plan on using NSAIDS for the duration of the trip. I find that if I let the pain an inflammation get away from me its hard to reel it back in so when I know I am going to be doing a lot, I go ahead and take something.
 














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