When Your Loved One Has Psoriatic Arthritis (PsA)

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.