So You Think (or Know) You Have Psoriatic Arthritis – What Now?

When you have psoriatic arthritis (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.

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, and do nothing to stop the ongoing joint and tissue damage. Collectively, these are referred to as non-conventional treatments.

There are four basic conventional treatment options for PsA:

1. Therapy, including massage therapy, physical therapy, and occupational therapy, to reduce pain and inflammation.
2. Protective devices, in the form of splints and braces, that are sometimes used to immobilize affected areas or protect them from further impact or damage.
3. Surgery, which is used only as a last resort, to replace damaged joints and tendons, or to relieve entrapped nerves or malformations caused by bone calcification or ossification.
4. Medications to reduce inflammation and to stop an over-active immune system from causing further medical issues.

While many people start their PsA journey with their Primary Care Physician (PCP), or a dermatologist due to psoriasis, psoriatic arthritis is a rheumatoid disease, and its long-term care requires a rheumatologist. Because psoriatic arthritis is a fairly rare rheumatoid disease, it is always best to seek out a rheumatologist with a great deal of experience with psoriatic arthritis patients.

Not delaying in getting that referral is very important. 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. Be aware that in most areas there is a shortage of rheumatologists, and the wait for a new-patient appointment can often take 6+ months.

When you first met with your rheumatologist, you will be inundated by an alphabet-soup of acronyms, initials, and unpronounceable treatment options. It is easy to become overwhelmed by the treatment choices, drug interactions, and potential side effects. It is typical to look-up these medications on the internet and then be horrified at the list of possible side effects – everything from developing cancer to having heart attacks can be listed. A good rheumatologist can put these side effects into perspective, and help you decide which benefits outweigh the risks.

“Waiting to see” is the first response of an overwhelmed person newly diagnosed with PsA, or 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” without fairly aggressive treatment. Those non-conventional treatments may make you feel better in the short-run, but the whole time, your joint and tissue damage is growing worse. 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.

As a layperson, you can look-up information online, read for hours, and still have no idea what is being said. Educated people, with advanced degrees and lifetimes of experience, are left boggled and confused by the highly-specialized and often contradictory information you will find on the internet. As laypeople (non-medical, non-experts on the subject), we have to rely heavily on the recommendations of our rheumatologists, who are experts. My four hours of research on the internet are no match for my rheumatologist’s 10+ years of specialized medical training, and years of experience directly treating this illusive disease.

The difficult part here is two-fold – not all rheumatologists are as up-to-date as they should be when it comes to psoriaitic arthritis diagnoses and treatments, and even the most expert rheumatologists are not always good at explaining the options, benefits, and risks in terms we non-medical people can understand. Rheumatologists sometimes leave us, non-medical laypeople, to decide between treatment options that we don’t completely understand.

I want to make one point very clear – I am not a doctor. I am not a medical professional, or a rheumatologist. I am not an expert in PsA. You should always take the advice of a trusted rheumatology expert over anybody on the internet. If you do not feel you can take the advice of, or understand the explanations given by, your rheumatologist, then you need a new rheumatologist!

Your rheumatologist can be the most expert diagnostician, but if she/he cannot explain things well-enough to you, then you cannot make an informed decision. Your rheumatologist may also be wonderful in his or her communication skills, but if he or she is ten years out-of-date in PsA research and new drug therapies, then all the understanding that is provided by a warm and fuzzy, compassionate doctor loses its effectiveness because the message and treatments are out-of-date in this rapidly advancing field. Choosing a rheumatologist who is knowledgeable and responsive is essential, and unfortunately, not as easy to do as it should be.

Even reading online reviews or asking friends or other medical professionals for recommendations is not always particularly helpful because while people know if a doctor is “warm and fuzzy” (relatable) and if their office staff are responsive, efficient, and accommodating, they are not typically qualified to comment on how expert and up-to-date the doctor is in the field of rheumatology.

Also, 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. This makes it very difficult to be a informed advocate in your own medical care.

We tend to seek-out doctors who are “warm and fuzzy” because it is comforting, without realizing that the complex diagnosis of this enigmatic disease is a very clinicial, intellectual endeavor, and that often the best medical diagnosticians and practioner in this complex field lack that “warm and fuzzy” personality that we, as patients, naturally gravitate towards.

Never be afraid to ask for a second opinion if your concerns are not being addressed, or if you are not even able to understand your options and their potential consequences. Don’t be afraid to say “I don’t understand what you are saying. I need for you to explain it again because my options are not clear to me.” Don’t let them rush you out of the office simply because your appointment time is up. Don’t be embarrassed to say “I have no idea what a TNF-alpha inhibitor is, or how it treats PsA. Can you explain it in simpler words so I can understand my choices?” Don’t be pushed into making a decision you don’t really understand.

The rest of this article focuses on general descriptions of the types of drugs your rheumatologist may suggest or prescribe. It is not meant to be a thorough description, but a basic, layperson’s explanation.

At the beginning, NSAIDs (non-steroidal anti-inflammatory drugs) are the first line of defense. NSAIDS are used to ease the pain and inflammation caused by PsA. They are taken by mouth (pills) or by rubbing them on the skin (topical). These help relieve inflammation, but they don’t address the cause of the inflammation. Different people respond better to different NSAIDs. NSAIDs have a high risk for GI issues, stomach bleeding, and kidney disease. Examples of NSAIDs are ibuprofen, aspirin, naproxen, meloxicam, and voltaren.

Steroids are often used, which blunt the body’s response to inflammation, but don’t slow down the progression of the disease. They are an anti-inflammatory or an immunosuppressant medication. Long-term use of any steroids can lead to bone loss (osteoporosis), especially if you are a smoker. You should not stop taking steroids suddenly, but must taper off taking them. The list of side effects with steroid use is extensive. You do not want to take steroids long term, and you need to be tapered-off of them. Drugs such as prednisone need to be carefully monitored and taken for the shortest possible duration. These drugs are great for flares ( a flare is a sudden worsening of the disease) but cannot be used long-term.

The next line of defense are called DMARDs (disease-modifying anti-rheumatic drugs.) DMARDs can stop or slow the progression of joint damage, but they do not cure the disease. Because DMARDs suppress your over-active immune system to control inflammation and slow joint damage, they can make you very susceptible to infections and certain diseases. Methotrexate is an example of a DMARD that is commonly used with PsA. Each DMARD has different specific benefits and risks. Your rheumatologist is the expert in choosing the correct drug based on your specific type and location of pain or inflammation.

Biologics are a very special type of DMARD and are prescribed when conventional DMARDs prove ineffective. These are very powerful drugs.

Biologics are harder to make, which results in them being very expensive. Insurance companies often require that many other, less expensive options be tried prior to approving a biologic. Even with good insurance, the regular deductibles and co-pays often do not apply, making them very costly to even the best-insured patient.

For example, seven months ago, I was put on the biologic Secukinumab (the trade name is Cosentyx.) I have excellent insurance with low co-pays and deductibles. My annual deductible had already been met, but biologics are excluded from typical co-pays. That meant that my monthly co-pay for this biologic was $1,650.00. You may find this hard to believe, but I don’t just happen to have an extra $19,800.00 laying around this year to spend on biologic co-pays. Fortunately, many drug manufacturers have financial assistance programs to help pay for expensive co-pays that insurance won’t cover. Some drug companies even have programs that will cover the entire cost for a set period of time if your insurance denies coverage, while you battle it out with the insurance company.

Biologics are given by injections or by infusion. Biologics may work well for one person with PsA, and completely fail for another. Sometimes, they work well for a period of time, and then, without warning, stop working. There are many different types of biologics, so if one doesn’t work, there are others to try.

Biologics are produced from living organisms, or contain components of living organisms. They use products obtained from human, animal, and microorganisms by using biotechnology. They contain substances that suppress components of the immune system.

Biologics are genetically engineered proteins. They are designed to reduce inflammation and halt joint damage. Each different type targets a very specific part of the immune system, so, for example, a different biologic would be selected for a person with joint damage in the finger joints than for a person with connective tissue inflammation.

Biologics fall into several categories based on how they function. Understanding these is very complicated, and a highly-trained and educated rheumatologist is the best expert for determining which type is needed for each individual’s PsA presentation. Each category is used for targeting a very specific source of inflammation. These descriptions are in layman’s terms and are not meant to be complete medical descriptions, or fully exhaustive in their explanation.

▸ Interleukin Inhibitors – Examples of interleukin inhibitors are Secukinumab (Cosentyx), Ixekizumab (Taltz), Brodalumab (Siliq), Ustekinumab (Stelara), Risankizumab (Skyrizi), Guselkumab (Tremfya), and Tildrakizumab (Ilumya).

▸ Selective Co-stimulation Modulator, T-Cell or B-Cell Inhibitors – An example of a selective co-stimulation modulators is Abatacept (Orencia).

▸ Tumor necrosis factor inhibitors (TNF-Inhibitors or TNF-alpha Inhibitors) – TNF-alpha inhibitors suppress your body’s reaction to TNF, a protein produced by white blood cells, that causes inflammation. Examples of TNF-inhibitors are Infliximab (Remicade), Etanercept (Enbrel, Erelzi), Adalimumab (Humira), Golimumab (Simponi, Simponi Aria), and Infliximab (Inflecta).

There are risks involved with using biologics. You can have an allergic or hypersensitive reaction. By suppressing the immune system, biologics increase the risk of infections, or diseases such as tuberculosis, hepatitis b, and hepatitis c. Some biologics interfere with the effectiveness of vaccines.

There is a huge list of possible side effects from each biologic, which has to be considered when making the decision to take them. Biologics are given by injection or infusion because they are proteins that are quickly digested, and they would become inactivated if given by mouth (in pill form.)

Combination therapy involves using both DMARDs and a biologic. PsA often involves several types of inflammation so a combination of a DMARD and a biologic are often used. It can help target a variety of inflammation issues that are very unique to each individual.

Pre-existing medical conditions, such as active infections, liver or kidney disease, cardiovascular disease, or a history of cancer, can complicate the treatment of PsA. Other medications you take can also change the way PsA medications work for you, as well as increase the types or severity of side effects.

If remission occurs, DMARDs and biologics are reduced but not discontinued. If you discontinue these, the disease will reactive later. The difficult part here is that, often, when the original drug that worked is reintroduced, the body no longer responds to it. For this reason, it is essential to continue with a successful drug on a maintenance dose even once remission has been achieved.

At the end, if you tried multiple DMARDs, biologics, and combinations, and you still are not finding functional relief, there are still options — very expensive and illusive options — available to you. These come in the form of clinical trials of new treatments and stem-cell therapy. Stem cell therapy is an emerging treatment that offers a great deal of promise for those with PsA. However, the FDA has not approved any such treatments, and all stem cell therapies are presently considered experimental and investigational.

As you can see, treating psoriatic arthritis can be a very daunting task. In my opinion, only a highly-trained expert in the field of rheumatology has the education, background, and experience to make that determination.

One of my biggest pet-peeves is when I hear a fellow PsA-sufferer say “My rheumatologist said I could try this biologic or that biologic,” leaving the patient to choose, when he or she clearly does not understand the implications well-enough to make that decision. I am all about patient choice, but in this case, I feel it is unacceptable to ask a patient, with no medical or rheumatology background, to choose, when it is so highly unlikely that the patient will really be able to make a informed decision.

Please don’t think I am saying a PsA patient is not “smart enough” to make this decision, or “capable enough” to understand something it took the rheumatologist 10+ years of medical school to learn. I personally have advanced degrees, and consider myself to be very intelligent, and yet, I know without dedicating 10 years or so to a very specific medical education, I am simply not capable of making that decision. My choice would be nothing more than a guess based on a very rudimentary understanding of the processes involved. When confronted with this type of decision, I always turn it around, and ask the rheumatologist “In your expert-opinion, which would you choose if you were the patient in my situation?”