I am in my 50's, a retired fireman who now works 40 hours a week, spending a lot of time on my feet. I was originally diagnosed at age 45 and was in so much pain and discomfort initially I didn't think I would make it to retirement age.
Personally, as a firefighter working 24 hour shifts, it was the side effects of the MTX that was the hardest. The day after being tired and sometimes nauseated. Now that I have a regular schedule, it is easier to take treatment and rest on my days off...making working much easier.
2 questions: 1. How many hours do you work weekly for an employer? 2. How has PsA changed your overall ability to work?
I can not work at all in my condition. I have both knees, both hips, both shoulders and both wrists affected. Driving is difficult, typing is difficult, holding a phone to my ear hurts. No grip strength.
I used to clean my house in a couple hours. Now it takes all day. Or 2 days.
I don't know how people work with PsA, but maybe I have more joints affected than most?
Also, I have not yet found any treatments - Allopathic or Naturopathic - which work. Strikes on EVERYTHING I've tried so far. God willing something will work so I am not totally disabled. As it is, I had to get the handicap parking thingie b/c I have difficulty walking and carrying groceries, etc. I can not think of any job I could do like this.
Was a dance & yoga teacher and office worker before all this.
natkat ... I am sorry to hear that you have been experiencing such debilitating symptoms.
For you, it may be a non-negotiable issue to go beyond Allopathic or Naturalistic options. But if you are willing to consider a Biologic solution, I found that both Humira and Remicade were very effective in controlling joint pain and almost completely eliminating psoriasis scaling. When I went on Humira, I played basketball with my 13 year old son for the first time. Being on Remicade for the last 7 years has enabled me to work, take long walks, and many other activities that I would have not been able to do at all, or only could do through great pain. Others might be able express reasons for dissatisfaction with the Biologic option, but for me, it was very effective. Even for myself, I did experience some negative side effects ... tired a lot, sick feeling for a few days after treatment sometimes, and a general "fuzziness" in my mind. Those things notwithstanding, it was overall a positive experience for the relief it brought. For financial reasons I have gone off Remicade for the time being, and my symptoms are back in force. I had forgotten how intense it had been before ... I had experienced relief from the pain and scales for a long time.
Certainly not trying to discourage you from remaining committed to your beliefs about medicine, but I thought I could at least share my story with you. Right now, I am both glad to have the medicine out of my system (I can think clearly enough to play chess again!) ... and also trying to figure out a way financially to get back on Remicade. Right now I am experiencing pain in both feet, both ankles, both knees, one shoulder, my sternum, both wrists, and ... well, you understand what it's like. ;-)
Hi natkat. I am sorry you are struggling, I don't know if I can say 'I've been there' because there are always some differences between our experiences. But I have certainly been somewhere very similar.
There is one specific which many of us do share: "Also, I have not yet found any treatments - Allopathic or Naturopathic - which work. Strikes on EVERYTHING I've tried so far." That is a very common complaint with PsA if we're talking traditional DMARDs i.e. Mtx, Sulfasalazine etc. The biologics seem to stand alone as the one form of treatment that so often works where all else has failed.
Of course it's your call in terms of the treatment you try. But I think it's important to realise that 'failing' the drugs you've tried so far doesn't mean you're a hopeless case, it happens to a lot of folk.
natkat said:
2 questions: 1. How many hours do you work weekly for an employer? 2. How has PsA changed your overall ability to work?
I can not work at all in my condition. I have both knees, both hips, both shoulders and both wrists affected. Driving is difficult, typing is difficult, holding a phone to my ear hurts. No grip strength.
I used to clean my house in a couple hours. Now it takes all day. Or 2 days.
I don't know how people work with PsA, but maybe I have more joints affected than most?
Also, I have not yet found any treatments - Allopathic or Naturopathic - which work. Strikes on EVERYTHING I've tried so far. God willing something will work so I am not totally disabled. As it is, I had to get the handicap parking thingie b/c I have difficulty walking and carrying groceries, etc. I can not think of any job I could do like this.
Was a dance & yoga teacher and office worker before all this.
Hi natkat. I'm pretty sure if I hadn't gone on Enbrel 2 years ago I'd be having a really tough time right now. As much as I so wanted to find a natural remedy or some sort of combination of spices and oils that would stop my inflammation, I had to accept that by avoiding the "real" meds, i.e., biologics, I was fighting a war with a cap gun. I have a part-time desk job and a small cleaning job. I know I would have quit the cleaning job, and not sure if I'd have the strength to get going fast enough in the morning to get to my office job on time. It used to be sooooooo hard getting going in the morning. Raising my arms to wash and fix my hair was so exhausting. Ugh! I used to draw portraits with pencils and colored pencils and I quit 2 years ago (before I went on Enbrel) and not sure when or if I'll go back to it. I do worry it would make my hands hurt too much and not wanting to even go there again. :-( The Enbrel has helped my psoriasis and PsA about 80%, which made life liveable again. But, I do have to say, as time goes on I'm not sure if it's working as well as it did at first.....I'm holding out hope! I would definitely try a different biologic without qualms if Enbrel fizzles out. I don't have any SEs from it that I can tell! No brain fog or fatigue. Good luck, natkat, I know you have tough decisions to make in your battle against PsA. Oh, and I have slowed down at home, too....it takes me longer to do my housework. I have bad feet due to damage from not getting serious treatment for my PsA in time, and my back has given me some serious problems so I'm really careful how I move. Realize the disease left untreated can cause irreversible damage.
NatKat: I think I have as many affected joints as you: both knees, both hips (right worse), both feet, both shoulders and c-spine issues. I'm still working. The difference is I inject Humira every 10 days.
In 2007, I visited an orthopedist who told me to lose weight. I knew it was more than that and five years went by before I found my wonderful rheumatologist--five years of continuing, increased damage which now can't be undone.
If I had begun treatment--and continued it--in 2007, I may not have had a shoulder replaced in 2013 which means I wouldn't now have lymphedema, impingement from a pinched nerve on the left side (c-spine issues.
If I had begun treatment--and continued it--anytime between 2009 and 2012, I wouldn't be in a wheelchair for long distances, I would be able to walk without pain in this right hip, I may not have been facing hip replacement surgery. I may not have needed help dressing in the morning.
What I'm saying is this: a lot of what I have is irreversible damage from first onset 2003-2004 until I was finally diagnosed and then treated with MTX (discontinued) and Humira.
Humira gave me my life back. Would I love to not have the little what ifs which creep in? I would. But I want my life more.
I last posted on this thread in September 2015 after just starting Enbrel. I had started a new career in Horticulture after a redundancy. At times I felt I had made the wrong decision as I struggled physically with the work and was not as productive as my workmates.
My PsA, relatively slow to progress at first, appeared to be going up a gear and at times I struggled to dress myself and clean my teeth. Possible, but painful.
One year on and a fantastic response to Enbrel has enabled me to increase my hours to the point where I work full time doing work which is both physical and outdoors in all weathers. My strength has returned and I am an equal member of the team. If I ache it is because I have overdone it.
I am sure that a more active lifestyle has had a very beneficial effect, but the single biggest factor that has changed my working life has been biologic therapy.
I have been working 4 weeks on and 4 weeks off. When at work I do 12 hour minimum days for 4 weeks straight. I work on the deck of a tug boat/ anchor handling vessel. I am currently experiencing my worst flare up of PsA and I am quite concerned that it is time for a career change as I can barely walk let alone get up and down ladders etc. But what to do. I want a flexible job for a couple of hours a week with a million plus salary per year.
That sounds like a wonderful job you have. Iām sure itās not always as thrilling as it sounds to a landlubber like me, but I bet it definitely has its moments.
How is treatment going? Many of us have found that biologics can be a game changer ā¦ could be the key to continuing with your career if youāre not on them already.
Itās tough considering such a big change on top of having PsA. If it is unavoidable though, then obviously itās best to start thinking about your options at the very least. Any chance of a sideways move within the company? PsAās a challenge on so many fronts - a lot of thinking, plotting and planning can be required just when we least feel like doing that.
One thing Iāve learned is that awful flare-ups donāt necessarily indicate what the future holds. Yes, theyāre a spur to considering all options but if thereās still room for progressing treatment they might yet become a distant memory at some point.
If you find that particular position you mention, please let us know how we can all apply.
Thankyou for taking the time to respond and sorry about my tardy reply. I have been doing a lot of reading on here and elsewhere (couldnāt get off the couch to do much else). I have an appointment to see a rheumatologist in three months but I have to fly interstate to get an appointment. I will definitely be asking about the biologics. I have been on methotrexate about five years ago and suffered with the side effects, seems the side effects of the biologics arenāt as bad. Work has taken the choice away from me as we have just finished a contract and now have no more work. Probably came at a good time for me as I couldnāt have worked the last five weeks anyway.
Donāt worry about taking your time, I can well understand!
By the sounds of it you have most definitely been doing the required plotting and planning! I guess the couch situation can help with that. I spent so long lying on the couch at one point I had feathers from the cushions embedded in the back of all my jumpers. And my other half bought me what has become my trusty laptop 'cos we thought sitting-down activities were all that my future held (it wasnāt!).
So sorry to hear about your work situation. But yep, matters are now simplified I guess. 3 months is a long time. I know that steroids are not a good long term option, but wondering whether (assuming you canāt bring that appointment forward - which would be ideal) you & your primary care doc. might consider a 3 month steroid taper ā¦? Just thinking about things like muscle wasting as well as how you must be suffering generally. I got muscle wasting in knees during my couch time, and, coupled with PsA, that in turn led to damage (allegedly) of the osteoarthritis variety. I see steroids as a kind of rescue remedy short-term.
Please fire away with any questions for us, weāre behind you.
My regular work week is 37.5 hours, but I have to travel about 10 or 12 weeks a year. The travel is my biggest issue. I am on an Intermittent FMLA for days I canāt make it to work due to the PsA.
Yes, my work life has changed. I have days I just canāt make it to work, but my employer is reasonable (so far).
The long travel weeks take a lot out of me. When I have to travel, I usually get to return home about midday on Friday, then I manage to dissappear fior the res fo the day to recover.
