PsA (psoriatic arthritis) is a strange disease. It has the word “arthritis” in it, but it is not anything like “old people” arthritis. It has nothing to do with bones rubbing together or wearing out – that is osteoarthritis.
It isn’t just rheumatoid arthritis “with a rash.” PsA affects joints, tissues, and some organs. It causes inflammation, in your joints and connective tissues. It causes your joints to narrow and become unusable. It causes all types of joint deformity and skin overgrowth.
It comes with “friends” (called co-morbidities) such as type 2 diabetes, high blood pressure, kidney disease, and liver issues. It can come with ulcerative colitis, irritable bowel syndrome, or Crohn’s disease. The constant immune battle that goes on in the body of a person with PsA causes fatigue and impaired reasoning. The impaired reasoning and confusion is often referred to as “brain fog.”
PsA is nothing like your grandmother’s arthritis, and stories about how she “cured” it with liniment, apple cider vinegar, and a special diet are not helpful. It isn’t the same thing. PsA is not just creaky joints or swollen knuckles – it is an autoimmune disease where your immune system is convinced that alien viruses are invading your body. Instead of protecting you from viruses, your immune system is confused and starts attacking itself. No one knows exactly why the body mistakenly does this, but there is a genetic component.
You see, with PsA, your immune system is over-active, and it mistakenly attacks your tissues, joints, and some organs. It can cause neuropathy in my feet, numbness in the hands, stiffness and swelling in the fingers and toes, inflammation, stiffness, and pain in the back and neck, a strange blurriness in our vision, and even kidney failure and liver disease. It can cause blindness if the eye because inflamed and it goes untreated. It causes pain, inflammation, horrible skin rashes, and deformed joints – but there is so much more to it than that.
One thing that is fairly unique to PsA is enthesitis. Enthesitis is inflammation of the sites where tendons or ligaments insert into the bone. It can actually cause the tendons to pull away from the bone. It happens in many areas of the body including your heels, knees, hips, toes, elbows, backbone, and the bottom of your feet. It feels like you have “worked out too hard.” Your muscles feel exhausted, and you can’t even lift your arms, feet, or affected area when it is bad.
The stiffness and immobility are worse first thing in the morning, and also get really bad after not moving for a while. Simply sitting too long in a car, or laying down too long can cause the pain and weakness. Your arms become limp and non-functional. Sometimes your hands curl and your fingers get stuck in odd and painful positions (called trigger finger) while you sleep.
There is no cure for PsA, but there are treatments that can make it less active. The medications that treat PsA are very powerful, and have many unpleasant side effects. They often make your hair fall out, cause all types of intestinal distress, make you nauseous, cause your nails to chip, crack, and fall out, leave you in a confused state where you can’t reason the way you used to, and can cause the most intense allergic reactions. They can even cause cancer (in rare cases.) They are also very expensive – with many of them costing over $10,000 for a one month supply.
Some people think they can just change their diet, add certain exercises, take certain herbal supplements, and their PsA will go away. While eating healthy and exercising is a good thing, it will not cure or even treat PsA. Without the powerful medications that inhibit the immune system, even if you start to feel a little bit better, the joint damage continues unchecked, and this damage is irreversible.
It is hard to understand, but you can’t just take a pill or get an injection for a couple of weeks, and then be “all better” and expect it will never come back. PsA doesn’t work that way. There is no simple solution, and if you have PsA, you can rest assured many medications are in your future. Without them, joint and tissue damage will run rampant. Joint damage is not reversible, so the sooner you get treatment, the better your outcome will be.
Typical symptoms of PsA include reduced range of motion, stiffness, difficulty moving or bending joints, redness and swelling, changes in nail shape and texture, general fatigue, swollen fingers and toes, swelling over tendons, and of course, the telltale skin rashes.
PsA is very unique to each individual, and the way it presents can be so different. One person may have dactylitis in his toes, while another person has deformed, swollen fingers. A third person, may have severe skin rashes, while a fourth person has difficulty walking due to plantar fasciitis. Another person may have agonizing back pain due to spondylitis. The treatment that works for one is ineffective for another. The medications that treat psoriasis are not the same as the medications that treat inflammation and degeneration of the spine. Treating PsA is highly specialized.
Because the treatment of PsA often requires several attempts before a drug therapy or combination is effective, laypeople often assume the doctor doesn’t know what she/he is doing because of a failed first or second treatment attempt, when the reality is that person’s PsA may just be particularly difficult to treat.
While many people begin their PsA journey with special anti-inflammatory or immune-boosting diets, exercises, alternative therapies like dry-needling or cupping, acupuncture, special soaps and ointments, and over-the-counter supplements, these tend to provide only temporary relief of some symptoms, and do nothing to stop the ongoing joint and tissue damage. Early intervention is important to minimize later problems. You don’t want to wait to “see what happens” because the damage from PsA is irreversible.
“Waiting to see” is the first response of an overwhelmed person newly diagnosed with PsA, or someone who is suspected of having PsA. “Waiting to see’ is the last thing you want to do. Each day that passes brings more irreversible damage to your joints and tissues. PsA never resolves itself on its own. It never just “goes away.” It certainly doesn’t go into remission without fairly aggressive treatment.
Time is not your friend when it comes to PsA. While there is no cure, you can get medications that will slow it down, and maybe even put it into remission.
Sometimes, but very rarely, PsA can go into remission for a period of time with treatment, but it always comes back, and usually with a vengeance. Even if you go into remission, you can’t stop taking the drugs, at least at a lower dose, or it will quickly come back.
And when PsA is extremely active, you suffer from debilitating fatigue. It feels like you have the flu, but it doesn’t go away. The immune system is so busy attacking itself, that you feel exhausted no matter how much rest you get.
PsA changes you. You can’t make plans, and if you do, you will find yourself changing them and backing out of things, because your body will shut-down at the most inconvenient times. You stop being able to process stress, and need to keep unnecessary drama out of your life – because your body will react physically to it. The anxiety of never knowing if you can actually do something, or participate in something you have anticipated, is real – very real.
Often, spouses, family, friends, and neighbors do not understand that PsA can flare up, making your ability to do things unpredictable. One day, you can do the laundry, and the next, you couldn’t do it if your life depended on it.
Frequently, people with PsA have to cancel-out of things at the last minute because their PsA pain flares up. When you frequently have to cancel plans, people stop inviting you, which leads to increased anxiety and isolation. Not feeling “in control” leads to depression and the constant pain makes a person wonder if life is worth living. People with PsA begin to feel left out, and that the world is passing them by.
Sometimes, people with PsA are unfairly accused of being lazy. It is hard to comprehend that people with active PsA need lots of rest, and that sometimes, they can sleep for 12 hours, and still wake up exhausted. When your immune system is attacking you, day-in and day-out, it takes a toll on your physical, mental, and emotional health. People who don’t have this debilitating disease have a hard time comprehending how it sucks the life out of you.
I have to add that PsA does not have to destroy your life. There are ways to continue finding joy in life, even though sometimes it doesn’t seem so. With the help of an excellent rheumatologist, the best possible treatment can be found, and it will help to diminish the pain and fatigue that is typical of PsA.
It often takes a lot of time, and trial-and-error, for the doctor to find the right treatment combination. This is because the meds used to treat PsA work so differently in different people. There isn’t one med that will treat joint swelling, and another that treats a stiff spine. What works for one person can completely fail with another person. It can be very hard to be patient when you are in pain, immobile, and exhausted.
If a friend or family member has PsA, here are some things you can do to help them.
• Be understanding when they have to change their plans at the last minute because they don’t feel well. You can’t just “push through” PsA. It is overpowering. It is overwhelming. Resting when your immune system is attacking you is essential – it is not a sign of giving-in.
• If a person with PsA has to cancel plans, keep inviting him/her anyway, or plan something else that they will be more likely to be able to do. Isolation is the enemy with a disease like PsA.
• When PsA is very active, things like house cleaning, laundry, preparing meals, gardening, all become practically impossible. Help out, if you can, or hire someone to help, if that is possible.
Family and friends can be a lifeline to a person with PsA, or they can be an anchor, dragging them to the bottom of the sea. Be the lifeline. Your support can make a devastating, debilitating disease bearable.
Even with PsA, people can lead a useful, happy life, if they have the support, compassion, and strength of their families and friends. PsA tries to steal the pleasure out of life – but supportive friends and family can help bring the joy back.
I’ve been in a funk since my Psa is flaring. I had been doing great for almost a year when my current treatment stopped working. I started a higher dose and no luck yet.
Reading your article helped my mood so much. It helps to know I’m not alone and I’m not being lazy or I’m not pushing myself enough. When I’m like this I beat up on myself so reading how I’m not alone.
So thank you for sharing your thoughts with us.
Dear Margie,
PsA is such a difficult thing to deal with. So much of the time, what works today stops working tomorrow. Flares can be so disheartening. You are not alone.
Best wishes,
Jan Mariet
I have never felt so heard since my diagnosis in 2023. What you wrote also explains some of the other health things I have going on. Thank you for sharing and putting into words what I’ve been dealing with. I’ll continue to read going forward. Hugs to you.
Dear Tracy,
PsA is such a misunderstood disease. It can only be diagnosed by excluding all other things “it could be.” and the general public has no understanding of all the issues that go along with PsA. I’m glad you came by my blog. Take good care!
-Jan Mariet
Wow…I found this article very informative and helpful in many ways. I am 73, and while I am treated and diagnosed for chronic RA (+ 20 years), I don’t feel as alone after reading this. No I don’t have PsA, but I felt comfort after reading this, being aware it wasn’t just me who felt sore, tired or in pain. Thank you, Marilla
Thanks for your comment, Marilla. My mother had severe RA and methotrexate (injections) were her “miracle drug” and “poison” all at the same time. She knew she’d feel terrible the day after her injection, but it allowed her to play golf the rest of the week, which was her favorite thing to do. Even when cancer overtook her, she kept taking her methotrexate (which is not recommended as it can cause cancer to spread if you already have it) but to her, it was important for her quality of life. She managed to play golf until she was 74 years old. (She passed away from cancer at 75.) I have to admit, I found the strength to battle both PsA and cancer from the example my mother set. There were so many times I said to myself, “My mother could do this, and so can I!” Her example made me strong.
When you have an inflammatory arthritis, like psoriatic arthritis or rheumatoid arthritis, it is easy to feel alone. Others wrongly compare it to osteoarthritis, which is nothing like inflammatory autoimmune diseases like PsA or RA. People can’t understand how you can do things sometimes, and then other times, the pain and exhaustion is just too much. I’ve found that sharing my experiences with others helps me cope with it, and helps me live with what I can’t change.
Best wishes! -Jan Mariet
Such a brilliant article which explains it perfectly.
All I can say is Thank you
Thank you so much for this. As a person with PsA, I feel that people look at me and say you are fine. They do not know what is going on inside. I am going to follow you and share with others. Thank you
Thank you for this. I hope you know you’ve helped hundreds (or thousands) of PsA patients and their families with these words. I’ve seen this blog entry recommended many times in PsA groups. Thank You. ♥️
This is a great description of what happens with this disease. I doubt I will ever get an official diagnosis because I am 62 now. I wouldn’t be interested in the drugs that are prescribed for it anyway because it sounds like the side effects are worse than the disease itself. Only thing is without a proper diagnosis no one will believe there is anything wrong. I have probably had this for a long time. Oh well…
Thank you! I have given this article to family members to help them understand!
thank you
That is the best explanation of my experience with this awful disease
Thank you for writing my life.
Thank you for your insight with PsA.
My daughter sent your link to help me better understand, the how,and the why. Beautifully written.
thank you for this x
Thank you, for explaining this disease in such a clear and concise way, that most people can understand. Much appreciated from a fellow PSA Warrior.
Very well written article! Thank you for writing this. It helped me to understand more about myself.
Hello Jan. Great article. Due to a workplace accident 30 years ago I was left with a Brachial Plexus injury and am diagnosed as 65% disabled. Within the past 5 years or so I have considerably more back pain, pain around my ankles, swelling as well as difficulty communicating with people. Perhaps I am also affected by PsA but how can I tell and how can I get my doctor to listen to me and check when I’ve been complaining of pain for so long now. I take as much as the equivalent of 1800mg of morphine a day and even that doesn’t help. How can I be diagnosed with this by my doctor and how do I approach her with this?
Just diagnosed, but living with symptoms for years. This is the. best. read. ever. Thanks!
She forgot to add years waiting in vain for a diagnose just because doesn’t show flakes on your skin!
That was me too but my Rheumatologist started me on medication straight away and my final diagnosis was a few years later when the psoriasis started.
Best, most highly relatable, and informative article I’ve read on PsA! Thank you!
You’re welcome, Scott. I’ve found that researching and writing about PsA helps me cope with it. I’m always glad when my blog helps others! Thanks for reading, and have a great day!
Tysm for sharing! It’s a brutal disease, and for a lot of us , it takes years to be properly diagnosed, which is truly sad to deal with
This article is so accurate. Psoriatic arthritis is a brute of a disease. Unfortunately I was only diagnosed 3 years ago but have probably had it for twenty years and am in an advanced stage.
Dear Sarah,
I think we have a great deal in common when it comes to PsA. I was diagnosed in January 2020, and my rheumatologist said, based on my medical records, I had had PsA for at least 18 years (which would now be 21 years.) Because I have a fairly severe orthopedic disability, every single issue I had, the doctor always said “It’s because of your disability.” and never had even a clue that I really had an autoimmune disease.
My rheumatologist also told me that, typically, it takes at least 3 different doctors over at least 10 years before a person gets the correct diagnosis of Psoriatic Arthritis. Because it can only be diagnosed by exclusion, and most general practice doctors may not have actually seen a case of it during their career, it often goes undiagnosed or misdiagnosed.
At 50 I am only few years post diagnosis, but I have had PsA/enthesitis for decades. I have been seen so many doctors (usually ortho as hips, shoulder, back and neck presentations) and quietly cried in the bitter humilitation of bearing all – only to come away not only undiagnosed, but also in some cases judged and fobbed off.
I was thinking of writing an article myself as none I’ve encountered truly got to the heart of it – this one does. Thank you so much for writing this gem.
Please do it helps so many ❤️🙏
Hello, could you tell me what tests are a part of the process in diagnosing PsA?
I was seeing a Dermatologist last year and using the UVB Light Box to control some psoriasis on my back. with zero tests, he jumped right to signing me up for some kind of financial assistance program for one of the drugs. It’s only from reading your post that I’m learning about the horrible side effects.
Hey Lisa,
Sorry I’m just getting around to responding. (I ended up having emergency surgery last month, so I’m just now feeling recovered enough to get back to my blog. You asked about the process of diagnosing PsA. First of all, there is no one test that can diagnose PsA. It is a diagnosis of exclusion. The second thing, while dermatologists often diagnose and treat psoriasis, you typically want to go to a rheumatologist for a PsA diagnosis. The lines sort of overlap a bit. Many of the treatments used for PsA are also used for psoriasis, so that might be why.
The National Psoriasis Organization has an article that explains the process that you might find helpful. https://www.psoriasis.org/diagnosing-psoriatic-arthritis/?msclkid=867de10331ed1814003c8530679cb517&utm_source=bing&utm_medium=cpc&utm_campaign=2022%20Evergreen%20-%20Dynamic&utm_term=psoriasis&utm_content=Dynamic%20Ad%20Group
Typically, rheumatologists start with the most basic forms of treatment, and then move up the scale from NSAIDs to DMARDs to biologics or JAK inhibitors. However, there could be many reasons to jump straight to a biologic. In my case, I have kidney disease, so I can’t take NSAIDs or DMARDs like methotrexate. Other than NSAIDs (ibuprofen, aspirin, etc) pretty much all PsA treatments have a laundry list of “possible side effects” that include everything from infections to (in very rare cases) causing certain types of cancer (such as lymphoma.) That’s when it is important to go over the pros and cons of each medicine, and decide if the benefits outweigh the risks.
The sad fact is, that if it is PsA, the last thing you want to do is “wait and see.” PsA is progressive, and it never goes away on its own. The damage it does to your joints, tissues, and organs is irreversible. There is no easy solution with PsA, only options that we have to carefully weigh against the inevitable damage.
Best wishes to you!