Working full time with active PsA?

General
1

I am newly diagnosed even though I have dealt with symptoms for almost 7 years. My symptoms started with just a very painful and inflamed hip. Now I have extreme fatigue, bilateral joint pain in swelling in the SI joints, both hips, wrists, fingers, knees, ankles and I also have quite a bit of foot pain. I am ready to start one of what I call the "nasty" drugs (humira, enebrel of methotrexate). My rheumy and I are going to discuss which one to start with at my next appointment.

Do any of you work full time with active PsA, and if so, have medications helped you? Have the side effects been bearable? I am not afraid of the risks of the meds. My quality of life is so poor that if someone told me I could have 10 more good years, I'd take that over living like this for 50 more years. Honestly I would.

I have always been a very, very active and lively person. I used to love running and was always on the go. I got my law degree in the early stages of the disease, before it was diagnosed, and I now have a five year old daughter. I would love to have more children but sometimes I can barely even make it up the steps to help my daughter with something in her bedroom so I doubt I can handle another pregnancy let alone caring for another small child. Anyway, I digress.

I would very much like to continue working as a lawyer, but unless I find some meds that help, I don't think I can. It's not the work that's the problem. I thrive on it. It's the hours of having to sit in one position (it feels like I'm sitting on rocks due to the SI and hip inflammation) and the fatigue. Of course the pain is very distracting, but I need naps during the day to feel my best and that just isn't happening while I'm at work obviously. I am terrified because I practice disability law and becoming disabled would be my worst nightmare come true. I would so anything not to end up that way.

Do I have a decent chance of going into remission on these meds? Is there a good chance I need to face the fact that I may not be able to hold down full time work? I will be having these discussions with my rheumatologist but I would love to hear from some of you who actually deal with this. From what I have read about the disease, it seems that symmetrical joint problems involving three or more joints is about as bad as it gets, and that is where I am right now. My ankles and knees are completely swollen right now and all look like baseballs. Getting the mail today was my "big activity" and all I really want to do is ride my horse (I know, I know, but please understand I had the horse BEFORE I knew what I had was chronic!).

2

good morning, would like to share my story i was diagnosed in October. i still work full time, 9-5 job. i was at the point where i wanted to give up. Everything hurt, could barely walk,was bed-ridden for themost part since. of course there were days i was afraid to do anything except lay in bed. These past months have been a roller coaster. Started with a steroid, added Humira, n mtx. During this time, it was definitely a lot of triaal and error with medication. finally found a combination that has helped me.

i was able to work two full weeks in row. (1st time since October). there s hope but remeber not every two people are the same. I hope you get treatment you and find the combination that works for you.

3

Lots of people on this site work full time with active disease and have small children. I am disabled but I am 56 and have had this since birth though not diagnosed until 2006. I was a nurse, had children and worked in a garden center, all very physical work! The key seems to be working closely with a Rheumy to find the right combination of meds and activity vs rest for your unique body and PsA. Good luck and welcome to the site. Let us know how it is going for you.

4

You might like think about seeing an Occupational or Physio therapist. They should be able advise you and help you with your sitting while at work and exercises you can do in your office. A TENS unit might help you can wear it without anyone knowing. They also have these cushions which have gel pads in the middle that might help you.

No one can tell you in advance if you will go into remission. It is a wait and see what happens. Much the same with the medications as we all react so differently it is very much try it and wait and see if it works for you or not and if there are side affects.

My suggestion would be is to take a look at what you need to do now so that you can manage better on a daily basis. We can only deal with the here and now not the past nor the future.

I do know that getting into a heated swimming pool and doing gentle exercises helps me and I would recommend you try it.

I am retired now, but I did work with PSA and with ongoing back problems. You do have to carefully weigh up what you can do by having realistic limits on yourself. Accept what you can no longer do and come to terms with this before you can move forward again. Sometimes this will be mean changes or adjustments so that you can balance your working life and your illness.

5

I am a nurse and when I had this huge first big flare in October, I was unable to work consistently. I did myself and coworkers a favor and took some disability time while my doc and I worked to get the right meds. I am back at work now at a full time schedule. I’m no where near 100% yet, but I am able to survive work. Really, there is no way to predict how you will do. It can take a while to get the med combination that enables you to function. As far as side effects, that really is hard to predict as well. I have had no side effects so far, but I’ve met other people who react poorly to almost every drug.
One of the most difficult parts of this disease is the uncertainty. I have found that the best think for me has been to plan for what I can, and then stop worrying. What I mean is, as far as work goes, I have planned my finances to support me for a year if I need it. I have an alternative to my current job that is less stressful and more flexible so that if I am ever unable to continue as I am now, I will still be able to survive. I continue to squirreling away as much money as I can just in case.

6

I worked full time with PsA for the last 15 years of my busy career (teacher, school administrator, teacher of high-risk teens). I retired as soon as I was eligible because, quite honestly, I was exhausted. Thing is, I didn’t know that I had PsA until 18 months ago. So there I was, doing my best to cope with pain, fatigue and depression. I managed, kind of, because I am really headstrong and determined, but in my heart of hearts I always felt that my work wasn’t good enough and that it was my own fault. I was somewhat overweight, chronically tired, achy, depressed, and stressed by the fact that I wanted to do more but, for some unknown reason, I just couldn’t. Despite all that, I know that I had a reputation as a really good, innovative and resourceful teacher. But I deep down inside, I saw myself as being lazy, unorganized, unfit and not performing up to my potential.



I’ve been wondering and thinking since your post, “How would knowing that I had PsA made a difference to my career?” and “Would I have packed it in and gone on disability?” Interesting questions.



I don’t think I would have stopped teaching, but I do think that I would have sought accommodations which would have allowed me to do better work with less physical stress. I loved teaching too much, and too much of my self-concept and self-esteem was tied up with it. Quitting all together would have destroyed me, I think.



Would I have retired when I did, as soon as I hit the magic number? Probably not. I think I most likely would have taught for longer, maybe part time, probably with accommodations. I still long for the classroom after five years. If I had known about my disease, I think I would have asked for (make that demanded?) and really enjoyed a scaled-down modified job. My favourite work was always helping kids with disadvantages (learning disabilities, problems at home, social issues, etc.) achieve success. I might even have been able to use my own limitations as an example of coping with a personal challenge. How amazing would that have been? But I never got the chance, because nobody figured out what the problem was.



Had I known about my PsA when I was still teaching, I think I would seen my ability to cope at all as a victory. Looking back on it, I marvel at what I was able (unknowingly) to achieve, but at the time, I saw my self so negatively. I wish I had known, fifteen years ago, how amazing my coping with a busy career and PsA really was! I would have felt so good about myself, instead of seeing my professional glass half empty.



I think you need to do some serious creative thinking here. I agree with Bella, an Occupational Therapist is what you want. They are amazing, resourceful, “outside-the-box” kind of people. How can your work environment be modified so that you can continue to do the work you’re good at, and that you love? What can you do to accept the limitations of this nasty disease while still being able to practise the profession which you love, and use your considerable skills and knowledge?



You can solve this one, Lillyb, and make a silk purse out of this sow’s ear. (OMG, am I showing my age now!).

7

Lilly,

Everyone is different. Many people respond beautifully to the biologics. Their disease goes into remission and they don't have side effects. For some people the meds don't help or they don't help enough. There's other people who find the meds work great for a year or more but they don't continue to work. Enbrel put my PsA in remission for 18 months now and I'm hoping it stays there for the rest of my life. Will it stay in remission, I have no idea! But then there's a lot of things I don't know, such as if I'll be struck by lightning, or if it will rain tomorrow.

8

Hi there.

I'm an appellate attorney for a state public defender's office. I supervise six lawyers and an administrative staffer and carry a caseload. I've been with this employer 24 years June 1.

I've been diagnosed almost nine months (although I've shown symptoms since at least 2006). I've been taking MTX since early September; added Humira in January and am taking a course of Prednisone with those drugs right now.

I was surprised at the depression which came AFTER I was diagnosed, in part because MTX tablets caused me such problems and then it took awhile to acclimate to injectable MTX. The greater part was even though I told myself NOT to, I had this idiot idea that once I figured out what it was and how to treat it, I would be "all better". I wasn't and I'm not going to be.

My supervisor and division director were pretty decent with the amount of time I had to take off last year. When examining my workload points (a "very productive" year for an appellate attorney like me is 24), it was obvious that I began to struggle in about April and really didn't quit struggling until I took time off during the Christmas holidays.

What lack of patience I've felt has been because of my own cranial-anal inversion the last six months of last year. My supervisor and I worked through that and came to an agreement at my evaluation in January. I've lived up to the terms with one slip, I think.

I pushed through the pain and exhaustion for I don't know how long--at least four years. Sitting in the chair for my hairdresser hurt; I was usually down the next day. Toward the end, my life was limited to my house, my office and very little else.

I started MTX in September. My husband and I attended a Vince Gill concert in November--the first one we had been to in almost two years. I was fine the next day; not huddled under my heated throw praying I would stop hurting.

I have been allowed not to have a desk but to sit in a chair and a half with strategically placed pillows and use a computer desk. When we have meetings, instead of sitting in uncomfortable chairs, I'm allowed to bring my person chair in (I'm also allowed to sit near a door in case I need to leave to move around). There are some days when I'm simply not going to feel like coming in so I can snuggle under my heated throw.

I got sick in February and was off meds for three weeks; lousy three weeks because I knew how much better I could feel. Going back on the meds after being off of them would follow about the same path as when I began the meds (gradual improvement). I thought I would go back to the way I felt before I got sick (moving well, next to no pain, hopeful for the first time in I don’t know how long). I was wrong.

I was miserable. The exhuastion has stayed away but the pain was horrible. Doing client video conferences/ sitting in meetings (even in "my" chair), simply moving hurt tremendously. I had to have my husband wheel me in and out two or three days. I couldn't walk well enough to or from my office. I did the old woman hunched over walk when I could walk.

Finally, in March, I called the rheumy and said I was done--nearly unrelenting pain in both hips, left ankle, left shoulder, assorted tendons and that spot the size of Texas under my left shoulder blade. The doc put me on 5 mg of Pred twice a day, along with 30 units of MTX every Friday and Humira every other week. I am now more hopeful than I've been in a long, long time--feeling better than I have in years.

I finished a huge brief Monday--earned 50 some odd comp hours. We had company for Easter dinner this past weekend, so we were cooking and getting ready for that while I worked on my brief. I took Tuesday off because I was exhausted--not the PsA exhausted, this was just needing some rest. I feel fine today and I'm not walking nearly as hunched as I was a month ago. This time last year, the work I did for Easter dinner would have put me out of the office for a couple of days.

As for remission, my rheumy is hopeful that the MTX/Humira combination will do that. he says withiin the next year to two, we'll know. I know I'm feeling better and in much less pain than I was, so if remission comes, great. If not, perhaps something else will put me there. I'm trying to be realistic and know that I may not be one of those fortunate people. We'll see.

9

Sixcatlawyer, you ARE going to be one of those fortunate people! Lillyb1983, you are NOT going to take nasty drugs, you are going take MIRACLE drugs. I'm new on this site, but I'm old with this disease. I think it is so important to take power over your life and PsA. I am not this disease. I am me. I'm not a victim. I'm not a survivor. I'm just me. I truly believe a positive outlook is the best supplement to any drug regimen.

I have had severe pain and psoriasis for 24 years and was diagnosed 11 years ago. I am on Enbrel, MTX, Flurbiprofen, Folic Acid, Tramadol and an occasional run of Prednisone. I would say it took almost 2 years to obtain the full effects of my medications. I call it "being perfect". I attained 99% skin clearing after 2 years and my pain is manageable with occasional flairs. For me the flairs seem to happen with stress. Generally the stress comes from my job. I'm a visiting nurse and I work full time. I love my work but sometimes there just isn't enough of me to go around.

I try to work on being happy every minute of the day. I do the things that make me happy: interacting with my patients, rescuing pitbulls, listening to music, spending daily quality time with my family.... When I'm happy my pain lessens. I push myself, too. I try to not take naps. If I'm not working I still get up, dress, and make myself do something, anything outside the house.

I was (I am) going through a rough patch when I found this site. My rheumatologist retired, and I was assigned to a very young doctor who is discontinuing most of my meds because I am "older" and there are too many risks with nsaids and dmards. I'm 57. That is NOT older. I am in the process of seeing new rheumatologists until I find the one who will restore me to my former stable self. I'm optimistic I will find a suitable doctor. I'm tired and hurting right now, but it's all temporary.

I wish all of you the best!

10

When I read the phrase that you would rather have 10 good years than 50 more like what you are having… Well that was very familiar!

I work full time as senior management in a mining company, with a gorgeous 3 year old to boot! I identify very strongly with the things you describe. For me, I wanted to get on the “nasty” drugs as fast as possible, because within 3 weeks of my onset flare I was looking at wheelchair catalogs and thinking about moving downstairs because I was having trouble getting up and down once a day.

I’ve been taking Enbrel for close to 6 months now (MTX did little for me), and whilst I’m not in full remission, the change to my quality of life has been remarkable.

I’m certainly able to participate usefully in a full time job, as well as my families life. It might not be quite as I wished or planned, but then point me to a senior professional working full time with a 3 year old who thinks they are doing everything they could possibly hope for???

I found Enbrel to have no side effects after the first couple of injections (in hindsight, I had a mild allergic reaction on the first injection - itchy everywhere for hours, then a couple of minor injection site reactions, none of which bothered me). I’ve been to remote Africa a number of times since then, and my infection rate (tummy, skin etc) has been far lower on Enbrel than it was on systemic low to moderate-dose steroids + MTX.

For MTX, the side effects were more noticeable, but definitely reduced over time to a manageable level.

When I say I’m not in full remission, I think it’s important to remember you may not be able to do things at quite such a full speed as you could before - but if you are a bit more efficient and use the pacing techniques you’ve no doubt figured out by now, the chances are that once you find a treatment that works, your quality of life will greatly improve. Good luck, and be kind to yourself.

11

Jen, when I read lillyb’s post, I immediately thought of you. About a year ago, you were struggling with similar issues to hers. With time, effort and good meds, you’ve got your stride back. Nice work.