I am new to PsA and am really enjoying everyone's contributions here. Makes me feel that I am not alone.
August 2012 one of my toes swelled up and was very painful/red. I assumed Gout since it runs in the family. Rheumatologist said nope based on tests. Borderline Lupus but went with PsA as diagnosis. Some nail issues (nail is coming off my toe). Mostly pain, swelling, and mobility issues. Pain is asymmetric. Often both hands freeze into claws making all fine motor tasks difficult if not impossible. Fatigue is almost worse than pain.
First Indomethacin then Plaquenil. For a few months MTX, Pred, Folic Acid, and Lortab. Just prescribed Enbrel to add on to this mix and I'm waiting for insurance approval to begin the injections. Will start with the Sure Click for ease of use but have noted on this forum that the Sure Click can sting. May opt for prefilled syringes next.
BTW, not sure if there are many geeks out there, but I'm tracking my symptoms on My Pain Diary (iPhone app) and my medications on RxmindMe (iPhone app). Was able to print off my pain report for my rheumy which further helped pinpoint what joints were involved.
Now for my question. I work from home with frequent air travel. I often have to move 70 or more lbs of luggage during my business trips. So...should I begin planning to rethink my career? How many of you can successfully lead professional lives with little to no accommodations? If I choose not to carry heavy luggage or travel, I will need to look for an alternate job. I'm a planner and need to know what to prepare for with this new diagnosis.
When I was early in this disease I would lift 60 lbs of compost daily. Know I have trouble with anything heavier than 5 lbs. But I was without treatment for 30-50 years. Everyone is different. Now the tendons in my arms would become inflamed and painful if I tried to lift it. Not at the time but the next day and for days on end. I have a very small 5 lb suitcase that rolls that I use for travel and I tip any valets extravagantly! But everyone is different.
I injected enbrel for years and found if I flattened the skin out rather than pinching an inch and allowing the alcohol on the skin to dry thoroughly the autojet did not sting at all. Now I am on remicade but I still draw up and inject myself with mtx weekly. I pinch a large inch and allow the alcohol to dry and there is no sting or pain. When I was injecting humira, prior to enbrel, it burned terribly during injection and left a welt on my stomach that flattened out and was turning from red to brown by the time I needed to inject again. I could always see where I had previously injected. I was probably allergic to a preservative or something like it as it felt like I was injecting lye. I don't think it was an allergy to humira itself as it never increased in severity, remained a localized only reaction. If I had developed itchiness or hives or difficulty breathing etc. I would have stopped injecting.
I hope this helps but do remember this disease is really not predictable. It is a very difficult part to live with. I tell my family I may no longer be able to dance but I am a mental ballerina now! Good luck as you figure out your path.
Thanks for your reply. Good tips on the injections. I am known for odd, bizarre allergic reactions so I wonder if I'm going to have problems with the Enbrel preservatives. We will find out.
I’m too new to PsA myself to offer advice or help but wanted to say thank you for mentioning the iPhone apps! I have been trying to decide how to track all this brings to my life.
Welcome, I am new also. The iPhone app is a great idea. I have been using enbrel for several weeks now. I do have itching at injection site for 2-3 days but taking lariat in seems to work well.
I continued running a landscape company 13 years after first being diagnosed. I would regularly be in trees for 8-10hrs, lift and carry rocks, etc...Knowing now, I would have made back-up plans so I could still work.
Everyone is different and has thier own limitations. You may be able to find ways to transport your gear easier or you may have to start thinking about an alternative career, you can't be over prepared.
I understand how you wonder if you can continue a professional career like that - my first bit of advice though - don’t go re-planning it until you’ve given one or two biologics a good go. Those of us who respond to them can find them like a miracle.
There’s no harm in considering alternatives while you give it a try (after all most people do eventually get worse, even the good responders), but I wouldn’t make any decisions just yet.
In the meantime, if its possible to pack your luggage into those suitcases with 4 wheels, so you just guide it rather than supporting some of the weight, that might help. And don’t forget to ask for help - from the taxi driver who drops you at the airport - can he wait until you’ve got a luggage trolley - to the airline - tick the needs assistance box - to the screening staff, stewards on the plane, heck anyone really!
Thanks! Looking into FMLA at this time. Not sure if I can even get short term disability now that I'm moving to biologics. Hmm...
GrumpyCat said:
I have a excellent app for iPhone, but I also have it on the iPad. It's free and it's called MyRA. It works really well for PsA as well as RA. I love it. It keeps track of pain and which joints you have it in, medications, activities of daily living, fatigue, and overall how you feel for the day. It has text boxes so that you can add your own notes and you can add pictures. It also will chart your symptoms in graph form. Even with all of that info it is INCREDIBLY easy to use. Oh, and you can also set a reminder so it will alert you to enter your info for each day. I absolutely love this app. If you search the site here, someone posted some screen shots of it.
I am really split on the jobs topic. I changed jobs as soon as I started biologics for psoriasis because I was in a work environment with lot of really sick people for 50+ hours a week. I found a job with a smaller company that is a lot less physically demanding and also much more understanding about illness. I am really glad I did because I ended up with PsA a year later. I would not be able to do the other job at all now, and I don't know how I would even try to look for a different job at this time. I am in pain a lot, and have a tough time not moving really stiffly. Interviewers would know something was wrong. I think that if you go downhill with pain, then it will be really hard to get another job since you are already sick.
On the other hand, no one knows how long they are going to be doing really well. It could be that you are really well medically managed or don't ever have a ton of pain that affects your job performance. I agree with Jen that Biologics can be a miracle. It really is true, and some people are lucky enough to respond to them right away without having to try several drugs.
For me though, I have been dealing with this entire process since October and so far I have been off of work for about eight weeks. Make sure that you have short term disability insurance and try to get long term if you can. Also, save money, so that if you do have a problem, you have enough financial resources to fall back on if you need to be out of work until you find the right combination of medications. I didn't look to see if you are in the US, but if you are make sure to go ahead and get the FMLA paperwork done.
What helps me the most with the burning and stinging of Enbrel was I started taking it after my runs/walks so my muscles were warmed up, the pinching the doctor may till you to do hurts 10 times more!