What My Psoriatic Arthritis Progression Timeline Reveals About the Future
I had no idea whether or not I would be a full-time wheelchair user before I hit 50. At the time of my original psoriatic disease diagnosis, doctors couldn’t predict the damage it would cause or the areas that it would affect.
The best they could do without visible damage was guess based on the places I felt pain or had inflammation.
What does disease progression look like for me?
To my surprise, I entered my 50s without needing a wheelchair at all. This was after years of using one for other chronic conditions in addition to psoriatic arthritis and due to my body responding exceptionally well to a new treatment.
Also, to my surprise was the rate that the damage escalated soon after this period of relief. After twenty-one years of living with this autoimmune disease, I now have a clearer picture of how this chronic illness will affect my future.
My journey with psoriatic arthritis
For the first ten years, psoriatic arthritis pain was constant in my hands and feet. During this time, I would also experience severe pain that would come and go in my lower back and sacrum. At the ten-year mark, the lower back and sacrum pain became constant. The damage was visible on scans and felt with every move I made.
When I reached twelve years, the pain in my hands and feet reacted favorably to a new treatment and were no longer my worst pains. My lower back and sacrum pain, however, increased. Years seventeen and eighteen were my favorites. I had tried a new alternative form of treatment, and to my surprise, my PsA pain was minimal during this period.
Not knowing if my newfound mobility would continue, I put my mobility aids in storage rather than selling them. And thank goodness I did! Towards the end of year eighteen, my knees began severely flaring. With each passing year, the amount of time I can walk decreases because of the damage that PsA has caused.
Having to cease treatment on my lower back with the alternative device that limited the amount of and severity of swelling around my spine because it aggravated an unrelated health issue brought that pain back with a vengeance in my twentieth year.
This brings me to year twenty-one, where there is now undeniable evidence of PsA damage to my hips. Somedays, I can walk across my home or into a store for one or two items with minimal pain. In contrast, others require the use of crutches or my walker to get from my bed to the living room sofa.
Relief doesn't always last
My psoriatic arthritis timeline reveals several things. The first is to be open to new treatments. Whether pharmaceutical or alternative, you never know what might improve your pain and slow progression.
While I had to give up the treatment that allowed me to walk into my 50s, I do not regret the period of relief that allowed me to live as I did before PsA took over.
And even though the treatment that still helps my hands and feet doesn’t do enough for my back and hips to keep me out of a wheelchair, the relief it does provide makes it possible to spend hours typing daily. It reveals that while remission or extended relief may occur, do not count on it to last.
Had I given away my mobility and accessibility devices during the period that I didn't need them, I would not have been able to afford to replace them all when the good times ended. Whether they relieve pain or not, treatments do not undo the damage already done.
So while my pain was less and I felt I could do more, the damage was still there, and my additional physical activity may have contributed to the rapid advancement of the joint destruction.
What the future holds for me...
I am not suggesting that I should not have increased my physical activity during that period of relief, but that I should not have gone overboard. After years of struggling to reach 1500 steps a day, I was overzealous and thrilled when I would reach 20,000 to 30,000 steps, which would have been okay in moderation.
Instead, I became obsessed with reaching unrealistic numbers daily. And lastly, my PsA timeline reveals that life can change instantly. There is no plateau to reach and ride our way through life. There will be periods of relief and higher activity, but until a cure is found, the damage will never be undone.
Knowing that knee and hip surgery will most likely be in my future, along with more complications from one of my other chronic conditions, I am preparing for extended stays in bed. Because I work from bed when flaring, I also know what will keep me working while recovering from surgery.
I look forward to sharing more about it in the future. As for mobility, we recognize the need for a wheelchair ramp or lift for our vehicle. While my husband has no problem lifting it now, that could change at any point. It would also allow me to hang onto some of my independence.
This or That
Do you feel you receive enough information about PsA from your doctor(s)?
Do you have any questions about psoriatic arthritis?
Join the conversation