Hi. I am new to this. I have been looking at these boards for a few weeks. Frankly, you guys have scared me to death. I am totally a new DX and a newbie to the meds. I have had PSA for several years but could not get DX until a few months ago. Methrotrexate and Humeria seem to help me somwhat. Some seems to be working and some not to much. Hands are totally deformed, left side/back/hip are in so much pain, left foot is totally starting to turn now. I am a software trainer for my company, I travel all over the country, spend lots of time on planes, trains and automobiles, any tips on how to make travel better? I am one of those fortunate people who love their job and want to keep it as long as I can. Tips on how to travel and make it better will be so great! Also any tips to make this sucky disease go away would be great too! I do hope that everyone here has had the best Holidays ever! Thank you for any advice you can give me!
MAT, everyone is different in their progression of the disease and their response to medications. On a discussion board like this, you are likely to have more people that are struggling and seeking companionship and support to deal with issues. It takes a few months for some of the meds to start working. Damage to your body won't be reversed, but it will be slowed down with the medications.
So good to hear that you love your job and plan on continuing working. I don't travel myself. . .I have two youngish kids who have a hard time traveling. But taking breaks and stretching things out is really helpful.
Sorry we’ve scared you (Boo!) it was only a year ago for me, and I am still often terrified.
But as a few of our members like to point out, it’s only those of us who aren’t able to reach remission (which most - 80% - do) that are lurking around this board for long, as well as a few mentors I am very grateful for 
Travel - try not to stay still for too long (unless you sleep). Pick aisle seats, and get up and walk all the time. Keep hydrated. Use business wherever possible. If not, don’t be shy and call the airline to tell them you have a disability and need wheelchair or scooter if required (airports in Aus here are small, but many of my transit airports for overseas can be kilometers walk plus trains or buses between gates) -just depends on your needs, and where you are traveling.
Distraction is always an excellent tool - if there is not a personal entertainment system, seriously consider investing in an iPad or tablet, or if you can still read comfortably and enjoy that, it’s great too.
Acknowledge that unlike before, you probably can’t effectively work cramped up on your laptop. You may be able to do it for forty minutes, but you’ll pay for it for the rest of the trip - which means its just not time efficient.
Take a wheat pack (microwaveable heating thingo) and ask the hotel to throw it in the microwave for you when you need it. Magic!
And finally, accept whatever help you are offered, and ask for what you need. As the trainer, you are the VIP expert and likely everyone will want to help.
I visit remote sites in the third world a few times a year - until just over a year ago, if someone suggested a tour, I’d insist on walking, despite 45 C degree heat (well you see and hear more walking - and I am used to the heat so it wasn’t a big deal ).
Now, however, my capacity to walk (at all - let alone in 45C heat) is somewhat diminished, so when they offer the air con 4WD, I always accept graciously!
And they love being able to help, you the big expert person, who knows more than them
Drop foot is concerning...... That usually means some kind of an impingement, I'd ask for a neuro referal,
As far as travel, I understand, trains are my first choice and will adjust my schedule so I can overnight to a major air hub I get a lot of work done and spend much less time flying and frankly more billable hours with clients. As long as I move about every 30 minutes or so I'm fine. When I am forced to drive I forget about "gas mileage" and make sure I have great electric seats with lots of adjustments.... I also have a voltage inverter so I can use a heating pad. A TENS unit is great for longer drives as if the electrodes are properly placed you don't get that "stiffness pain" Also adjust your MTX and Humira times to maximise the good effects and minimize the side effect period. Adjust your travel times too if you can. The most important thing on the road is SLEEP A tricyclic anti-depressent is a great evening med and actually keeps your bio clock in time allows your to sleep and make increases your pain management. Melatonin is good too. Turn off all screens an hour or two before retiring - music, yoga, other stretching, prayer, or meditation are far better activities and reduce pain levels the following day (REALLY!!) Deal with home issues early in the evening.
It takes a while to get the best effect of the Humira and a lot of tweaking with the other meds activities to get where you want to be. The vast majority of us get there. You are fortunate with your job as you CAN make adjustments. Oh one other thing talk to your Doc about an "emergency pack" Include a day or twos worth of predi (I'm set up for 20mg a day for 4 days) and few days worth of muscle relaxants and maybe some big gun pain meds) You never know what can happen 1000 miles from home and your docs.
I totally agree with lamb - an emergency pack of meds and such can be a huge help - even for those of us who don't travel.
Hoteeze packs are invaluable to me when traveling. They are instant-heat disposable type things, so you can use them with ease on a plane or when driving.
My doctor gave me some Keflex for emergency skin infections. It came in handy this week when I got a toe infection but did not want to spend Christmas in the ER. I had it checked by MD today. She doubled the dose but told me it looks ok. I do not use prednisone any more due to side effects that I get but having some antibiotic for skin problems has been very helpful for me. If I was prone to urinary tract infections or upper respiratory infections I would ask my doctor for an an antibiotic specifically for that to have on hand too.
Thank you guys for all of your suggestions and help! I hope I didn't offend anyone when I said you guys scared me to death, I just meant reading your stories and the pain and suffering you all endure. I am sure that like all of you, I have always been very independent as well (I was divorced for 15 years before I got married again) so I am just used to being on my own and never having to depend on anybody for anything.
It can be scary reading through the posts - most people have questions about issues they're having, whether it be physical, emotional, etc. rather than the joys in their lives.
I have severe PsA/spondylitis and try to LIVE every day. One of the things that I've found most helpful is connecting with others with PsA and other forms of autoimmune arthritis both here and through blogs. My blog, should you care to take a peek, is basically about my life, my family, my point of view, etc. but I do blog a lot about living with chronic illness/pain - and try to do so in a positive manner. It's called rannygahoots: rannygahoots.blogspot.com . I also enjoy RA guy's blog.
I was very scared the first time I found this website. I actually had to leave for about 6 months until I had a better idea of where my disease was headed. Some people respond beautifully to the meds and many of them don't post here because they're healthy and their disease doesn't concern them anymore. I would be one of those people except that I've made some friends here and I figure once in awhile it doesn't hurt a newbie to see a more positive story.
Thanks nym, I will check out the blogs. Andrew, thanks for your post as well, it does make me feel better to know that some people respond well to the meds. I think I am beginning to respond to the meds too, I just haven't been on them very long. I actually wake up and am able to move my hands and fingers without any pain and the swelling is down so that I can almost remove my wedding rings (although my husband is not a fan of that, LOL). I'm still waiting for them to kick in for my back/hip/leg but I'm not giving up hope. I did recently have surgery on my knee for a nerve thingy (that I can't remember the name for) and it seems to be helping with the feeling returning. I also had a shot in my spine last week that I hope will continue to help with that pain, it has given me some relief and mobility back. In addition to the meds I am looking at other things that may help as well - diet, exercise, supplements, etc. I'm sure that I am like everyone else and just looking for the fix and some support along the way as most of my friends and family do not understand. I have several family members who have RA and my family is so supportive of them and their struggles but nobody understands PsA and do not realize that it is just as bad for me as RA is for my other family members. Oh sigh, guess I am whinning so I will stop. Thanks to everyone who responded and offered me suggestions, I will seriously take you all up on them! To all of us, I wish us great health and a cure for the New Year!
It sounds like you had PsA for a long time before you settled on some meds. I guess that did some damage, huh?
It’s scary to think about and discuss our physical disorders but, it is vastly important to be brave and willing to discuss the treatment options because early treatment of this disease is essential to living a better life.
I got on meds within three months of my symptoms starting and luckily my body has responded very well.
It’s been a year and a half, and now I’m tooling around with diet and exercise to make the condition even more manageable.
I find ingesting too much dairy, sugar, and wheat in particular will cause inflammation in my body. So I try to stick to lean proteins and lots of veggies.
If you’re willing to tackle diet, I think you could do you a whole lot of good too.
GeriMar said:
It sounds like you had PsA for a long time before you settled on some meds. I guess that did some damage, huh?
It's scary to think about and discuss our physical disorders but, it is vastly important to be brave and willing to discuss the treatment options because early treatment of this disease is essential to living a better life.
I got on meds within three months of my symptoms starting and luckily my body has responded very well.
It's been a year and a half, and now I'm tooling around with diet and exercise to make the condition even more manageable.
I find ingesting too much dairy, sugar, and wheat in particular will cause inflammation in my body. So I try to stick to lean proteins and lots of veggies.
If you're willing to tackle diet, I think you could do you a whole lot of good too.Unfortunately I am one of those people that it just took forever to diagnose with this. I don't have really bad psoraisis, just some outbreaks now and then. I had a doctor that would not give me a referral and until I changed doctors I could not get one. Fortunately once I did change and got a referral the whole process was quick. I was on meds within 2 weeks. I guess that it just seems like I was fine one day and the next my body started falling apart and I really wasn't expexting that! What you will find with me is that I am always going to look at the bright side and try and find something that works for others and maybe will work for me. So I take all suggestions and will try them. Working on diet now. I have to be careful, I am 5'7" and only weigh 128 and doctors are worried about my weight. I know I eat healthy, lots of fruits, veggies, seafood, grains. Just trying to figure out what may be a trigger for me. Working on the nightshades now to see if one of them is the culprit. Going to start on grains next unless you have a better suggestion. Again, thanks for the support and suggestions!
Last time I traveled by plane was last Christmas, and was able to take all my meds, my oxygen, CPAP, and everything else I medically needed. The trip I did before that one, I notified the company that supplied my pulmonary needs who had everything I needed already waiting for me in the hotel room, everything set. The hotel staff made sure my stay did not lack but was a comfortable one. Courtyard Marriot, if you were asking.