Does it get worse

[tamac]

I have a question for everyone. I may have the opportunity to retire and go to work somewhere else. If I draw retirement I don’t need to make as much money at another job, but it would cut out the 2 hours of drive time a day that is killing me.

My wife said I have to consider if I am going to quit working altogether or try to keep working. If I can get a job that has no travel and is only a 5-minute drive from my house, instead of 1 hour of traffic each way now, I think I can keep working.

The question for everyone is:

Does it get worse?

It has been 4 years now and the pain seems to have levelled off. It comes and goes and I have good days and bad, but after 4 years, am I seeing the worst it gets?

How has everyone else progressed over 5 to 10 years? Has it stayed about the same, or gotten worse?

I don’t want to risk changing jobs if this stuff is going to get worse. I have been through three biologics and they only keep me moving. Doc doesn’t seem too excited that things will get better if I try more biologics.

[Stoney]

It sounds like you have a lot of decisions to make. You asked “Does it get worse?”

Obviously everyone will progress differently, as well as respond to different meds differently. I was diagnosed 12 years ago, and I’ve been on the same biologic for six years now, I think. It has slowed the progress of the disease overall, and that’s the intention. But even though the progress is slow, it continues to accumulate for me. Joints continue to get damaged. I haven’t had any joint replacements yet, but it’s obvious that those will be in my future. I already have significant joint space narrowing in my hips and knees.

Wha’ts really become problematic for me is that I developed pericarditis (and pleurisy?) almost 2 years ago. It has become chronic, and is, in many ways, impacting my life more than the joint damage.

My thought would be that your current situation can be used to a certain extent to predict your future for the next number of years. You’ve seen that lots of people do stabilize on meds, and will do fairly well. The other thing that I’m thinking, is that if you’re commuting 2 hours every day, this is adding to your stress. Lowering your stress levels overall may be really helpful.

[Jen75]

Hi Tamac, I can’t comment on whether it will get worse. What I can tell you, is what a wonderful difference changing from a job that had a 3 hour-a-day commute and full time hours (45 hours per week) to one where I commute 3 hours a week, and work around 30 hours. It has gotten markedly better - wonderfully better - and in the background of all that was medication changes, that autoimmune reaction to Humira, all sorts of weird things - but not being overloaded with work made it all so much easier to cope with.

Having said all that, I’m not sure I understand what the risk is involved with changing jobs - does this somehow change your eligibility for retirement savings or disability? And also if you want to keep working - because you like it? Cause if retirement and disability are all equal, and you want to work, I’d say go for it.

On the other hand, if you want to retire and can afford to (and I mean really consider this - what do you actually need?) then that’s a different question. Lots to think about!

[Poo_therapy]

I think everyone’s disease wanders its own very individual paths. Some do remarkably well when they hit the right med for them and basically we don’t really hear from them as they don’t post on forums or have anything to discuss on such forums. I don’t think consequently there’s an easily identifiable trajectory to look at either. I don’t think such a thing exists at all frankly.

It’s been nearly 4 years for me too. I’ve had loads of med induced issues, fractured pelvis, compressed fractures in my spine (all from steroids) which caused significant pain issues. Then I’ve had meds fighting with eachother making me resident in my bathrooom, and then hospital - namely a biosimilar to Enbrel and sulfasalazine. Then I’ve had a biosimilar to Humira also make me resident in my bathroom and made me feel like I was wading through an impending sense of doom and which also reignited my asthma again. Nasty drug for me that one.

Presently on the loading doses of Cosentyx (300mg dose) and wow am I suddenly doing lots better. I’m astonished how much nicer it is to have neither my hips or SI joints give me so much daily grief. I’m only 2 weeks in too. No idea obviously yet, if this is a honeymoon or my new reality. But I’m happier (incredibly so) at my just better days presently.

I work full time but mostly from home. I go into the office maybe one day a week by public transport which means 3 to 4 changes of trains each way. But no more than an hour to an hour and half commute each way. Presently I’m not even doing that given the loading doses of cosentyx will most likely suppress my immune system considerably and I don’t want colds. chest infections and whatever else from the ‘great unwashed public’ both on public transport or indeed my office who employs around 3,000. Especially not at this time of year when colds and viruses tend to spike.

I don’t understand the risk of you changing jobs and it getting worse. Surely it’s far worse for you to keep doing the job you’re in now, if it gets worse? If it gets worse and you’re in a less stressful job, isn’t that better? If it gets worse and you’re still in your present job, isn’t that much worse given your long commute etc?

But really at the end of the day, given the vagaries of this disease for some of us, given its intractable resistence to the meds in some of us, I would say regardless of everything, do what will make you more content each day. Even if that means downsizing considerably given any contractions in income/disability/pension etc etc.

This disease can take so much from us, grabbing less stress is essential if it’s possible.

For me personally continuing to work is good for me, not just for my income and ability to pay my bills. However I’m not sure presently if I could work in a office 5 days a week with the type of commute I would have to do from where I live. I’m actually not sure I could physically be in a office 5 days a week either. Whilst I work full time hours at home, there’s an easiness to that, no one is watching me etc and neither do I have to keep conversing. And more essentially I get to walk my dog every day (not on hard pavements and train platforms) but in the woods with softer ground which keeps things moving better for me. And frankly that keeps just me sane as well. I like the intellectual challange of my job (and obviously its income) but being able to walk my dog in relative wilderness each day is what really rocks my boat. So now I’m lucky enough to be able to organise my life to do that. That might not always remain possible (employer wise) but I’ve grabbed that opportunity for now.

And the thing is despite, opportunities are always available if we look for them. Really they are. Getting older, heading towards retirement etc doesn’t mean opportunity stops. It stops if you stop looking for it, but I know lots of early retired people of my age (57) who still work but at jobs they love, instead of jobs that drain them. Their income levels might have dropped but their contentment has quadrupled. And that’s my ambition eventually. Regardless of what this disease does to me or not as the case may be.

[tamac]

Thanks for the info. I did ok on Cosentyx, but the doc changed me to Humira. If the Humira doesn’t work better, he said I would go back to Cosentyx. My biggest issue with my current job is that I am golden handcuffed to it. But, I spend 2 to 3 hours a day in the car. I can retire and draw a monthly, so I wouldn’t have to make as much money in a new job and I am looking at place where my wife works that is only a 5 minute drive from my house. I am just weighing all the options. Input from everyone is great. Thanks all.

[Zelda]

I think you need to consider the amount of stress you have at your current job with that commute. Stress is the worst for me, so if retiring and working at a job near your home would be less stressful then by all means YES! Go for it… I would also consider insurance coverage though for you biologic meds and specialists. Make sure the insurance you switch to will cover your meds… Good luck!

[Mom_Cat]

Does it get worse? Possibly. Probably. Maybe. With correct and effective treatment you have a fighting chance. And even if your disease activity is currently high, if it’s like mine, it will suddenly decide to make nice and stop torturing me. Sometimes for quite a long while. So, as you can tell, I have no great wisdom to offer in the disease department. However the retirement department is a different story.

I retired about 5 years ago, a number of years before “normal” retirement age. (Whatever that may be ) Although this disease played a part in that decision it was a small part. When I started working I had no intention of perusing a career and told my boss I would commit to 3 years. 3 years turned into many years and a career happened. Over the years he and I became good friends and when he was diagnosed with ALS I was one of the first people in the office he told. Before he had to quit working he literally became dependent on me. (He was was VP and regional manager of a national bank. I was his assistant) He dictated, I typed. I handled his files. I turned and moved the pages he needed to read. I did his calculations, etc. I never intended to be at the bank as many years as I was but I was glad to be there for him at that time. When he could no longer work and retired, I stayed at the bank for another year. But it was not the same without him so I gave notice and went to a Title Agency. During that time my husband and I often talked about our retirement. Since he’s 10 years my senior, and we really like being together, we had planned to retire about the same time. We were interested in more life together with a bit less money than less life together with a bit more money. I was at the Title Agency for about 18 months when we decided that it was time for me to quit and finally be a housewife, the only career I really ever wanted to have.
That digression was only to say, do what makes you the happiest. Stress can kill, albeit slowly. Living with this disease is stressful enough and we have no way of knowing what will happen in the next 5 minutes much less the next 5 years. Yes, one needs to consider the future. But take care not to live there. After all, the future never actually gets here. If the new job would give you the means to live, reduce your stress, cover medical and give you the opportunity for a better life with your family why wait?
I asked myself those questions and have never regretted retiring when I did. And it does make it a bit easier to live with this disease.

[susieb17]

Hi Tamac,
I’m not even going to figure in our condition. I can tell you that my commute is getting longer all the time (California traffic). I’m 59 yrs old and I’m sick to death of the commute. I have a minimum of 1 hour each way. Most days it is 90 minutes. Even without PsA I would love to change my job and either work nearby or close to home.

If nothing else, think of the less stress of the traffic, the wear on your body and the home time.

Just think on that side.

susan

[letizia]

Pithy question. The chicken or the egg. Must say on one hand getting more and more tired, and must also have a look at early retirement, but on the other hand must not stop working, would love to find new freelance stay at home jobs. Of course retiring if it will be possible would leave me out of insurance schemes possibly, and medical expenses are probably destined to be on the rise in our conditions in future.

Am thinking hard about the issue of finding the way that would make me happier, only am terrified of having taken after my father who died working, never retired from his businessman position. On the other hand, think he was the kind of guy who would never have retired and preferred to die on the rink, wearing his boxer gloves…
Perhaps part time might be a solution,

[Susan2]

I was a teacher for 35 years. I worked hard, and - very suddenly! - realized that I wasn’t capable of my own best practices to reach at-risk students. I retired two months later, followed a year later by my husband. We were both ten years “early”. My PsA was diagnosed two years later, but by then we were moved out to the country, and living far more simply. We whine sometimes, when money gets tight towards the end of the month, but we are very happy to no longer be working. We have a private insurance policy which has made my medications available, until the government takes over when I’m 65. I was very lucky that leflunomide ameliorated my pain as the biologics would have used the annual max almost immediately. Nonetheless, I suspect my plan managers will do the happy dance when they don’t have to fund my meds! All this to say that enduring the vagaries of this disease is far more tolerable when work doesn’t require so much of your energy.

[Sybil]

@Susan2

enduring the vagaries of this disease is far more tolerable when work doesn’t require so much of your energy.

That’s so true. Especially if the job has been replaced by another one that’s less demanding and / or if you’re able to keep a sense of purpose or fulfilment or whatever the job gave you. Or even to discover other ways of living that make more sense to you personally.

Before I was more or less forced to stop work, we did the sums to see if we could afford for one of us to take a sabbatical at the very least. All that hard maths didn’t give us the answer we wanted. Weirdly, since I’ve become a lazy good-for-nothing, finances have been okay. Being a time-poor professional can be expensive, I conclude!