Will my PsA eventually disable me?

Hello . You're concerns for the progression of PsA are understandable. Unfortunately, there is no one answer for the question of how disabled someone might end up becoming from PsA. Disability from PsA has a pretty wide range. While some people might become more disabled, others won't. It's hard to know who will be impacted and in what specific ways, but the good news is that a lot of treatments help keep the disease from progressing further. (Here's a link to information on treatment and treatment types, https://psoriatic-arthritis.com/treatment.) I also wanted to share an article written by one of our advocates with PsA about disease progression, https://psoriatic-arthritis.com/living/progression-tips.

Do you currently see a rheumatologist for your treatments? I ask because it sounds like you're getting some relief from skin issues, but not, perhaps, from other inflammation. Of course, only your doctor can say for sure, but I'm wondering if your treatment isn't as effective for you as it could be if it is only managing the skin symptoms and not the joint pain or eye issues. Also, as you mention your eyes, if you don't already see one, I would recommend seeing an ophthalmologist. Here's some information on how PsA can impact the eyes, https://psoriatic-arthritis.com/psa-symptoms/eyes-red-pain-vision.

It certainly is a lot to manage, and the worries of the future are concerning and challenging. Hopefully some of our community members can also share their experiences with you because, although it feels like never-ending darkness, there is light, especially once finding a treatment that brings relief! Please don't hesitate to reach out here any time.

Sending you gentle hugs. -- Warmly, Christine (Team Member)

Wow, a lot to unpack here. I really feel your pain, and your worry, and your fear. Having this disease is a burden, both physically and mentally, that nobody should ever be challenged with. As Christine has said, there is no one simple answer to your question. And currently, there is no cure, only treatments and lifestyle strategies to mitigate the effects and slow progression.

If you find your current job to be to physically challenging, and only you can make that determination, then you should feel free to speak with your employer about making some kind of allowances for your condition, whether its more rest breaks, or a less physically demanding position. But it is an unfortunate fact that many in our community end up on disability at some point due to the nature of this disease. You may have months of relief from symptoms, and then flare for months, causing you to be unable to perform even the most menial physical tasks.

As for medications, you did not indicate what you are currently taking, nor if you are currently under the care of a rheumatologist. But you have mentioned medications, so at least it can be assumed you are receiving care from a medical provider of some sort. When I was first diagnosed, after suffering what I later learned was a major flare, my rheumatologist sat me down and told me that this is a disease with no cure; notoriously difficult to treat; and even the best treatments only slow the progression of the disease, and then, to varying degrees based on any given person’s response to treatment. I was in my early 40s, going to the gym every day to lift weights, riding motorcycles, doing woodwork, and suddenly I felt as though my life were coming to a screeching halt. This was in 2010 or 2011.

I won’t go further into my journey here, as this is about yours. Suffice to say that my life did not take quite the deeply downward trajectory that I expected. The drugs now available are much more effective than years past, though nothing is perfect. And there is much more to disease management than medication. Lifestyle changes are a necessary component to this. Healthy eating habits, weight management, alcohol and tobacco cessation, a proper exercise regimen, and stress management are all key to success. And even then, there will still be some bad days. But properly managing this disease can at least mean those bad days are less bad than otherwise.

So, a few suggestions for you. Number one, don’t get to fixated on internet research into this disease. There is a lot of discouraging discourse surrounding this disease, but there are also lots of people experiencing success with their treatment. You just don’t read any of their experiences, because they’re living relatively normal everyday lives rather than joining communities like this to pour out their woe and worry. Focus on your own experience and expectations. And you may eventually have to redefine success and productivity. What was once easily achievable may now require considerably more work. Maybe even more than your are able to bear some days. So, if you can achieve even half of what was possible five years ago, learn to embrace that as a success. It is important not to beat yourself up for having to make these adjustments.

I won’t give you the rosy outlook scenario, as my own experience, which has been much more positive than that of many others here, prevents my doing so. But a bit of perspective may be helpful, or even encouraging. Having this disease has forced me to make changes in my life that have led to many very positive things. I stopped smoking and drinking; I lost weight; I began running again ten years ago, and ran 27 half marathons between October 2016 and October 2024, as well as many 10k and 5k races, accumulating numerous age division first, second, and third place awards; I found a new love for being out in nature through trail running and cycling, making great friends that I would have otherwise never even met. Am I still in constant pain? Yes, to some degree or another, I have pain somewhere in my body on a daily basis. But I don’t let it interfere with enjoying my life. I’m currently on a jak1 inhibitor, Rinvoq, and my major concerns have been opportunistic infections, not pain. I still take NSAIDs and Tylenol for pain when needed, and have learned to rest my body before overdoing it. I don’t run the kind of miles I was up until late last year, taking more walks with my dog instead. As I age, and this disease gradually progresses, I make adjustments, and I redefine what counts as a success. And I don’t look back at what I was once able to achieve as a measure of what I can do today.