Playing the Waiting Game with Psoriatic Arthritis
Waiting, Waiting, Waiting
It seems like from symptom onset to getting some relief is spent in a never ending waiting game. Often, the first symptoms of psoriatic arthritis are simple to brush off. It is easy to find plenty of reasons to blame those first aches and pains felt in fingers and feet. Early morning stiffness that gets better after breakfast is easy to explain away on a bad night’s sleep or overdoing it the day before. So what do we do? We wait to see the doctor.
Finally, we decide that something might actually be wrong and decide to call the doctor. The first stop is primary care. Usually, you can get into your primary care doctor pretty quickly. Once there, even with a good doctor, convincing them that your symptoms are real can take some effort. You will be sent for blood work and possibly x-rays. What do we do? We wait a week or two for the results.
Once the results come through, we wait to hear from the doctor about what those results might actually mean. If we are lucky, then we get a referral to a rheumatologist. Rheumatologists, at least the good ones, schedule months out, especially for new patients. What do we do? We wait months to see another doctor.
Your next appointment finally arrives. Now, you are more certain that something is wrong. Pain has spread from your fingers to your hand and wrists. Your morning stiffness lasts longer and now comes in the evenings too. More likely than not, this first visit will result in more blood tests possibly an MRI, and likely a prescription for prednisone. What do we do? We wait for more results.
Two weeks later, you have a follow up with the rheumatologist to confirm diagnosis and make a care plan. Chances are, you will be prescribed a DMARD such as methotrexate or leflunomide. We take the medicine as prescribed. Meanwhile, the pain continues to worsen and begins to really take a toll on daily life. Your hands might feel weak. It may be difficult to do simple tasks you took for granted before like opening jars or taking long walks. What do we do? We wait months to see if the medicine helps.
Several months later, you are back at the rheumatologist’s office. Now your back hurts as well as your knee. You both decide that the methotrexate isn’t working. This is where the real waiting begins. It is time to move on and try a biologic such as Humira, Enbrel, or an infusion therapy like Remicade. These are special medicines that require prior authorization from your health insurance carrier. What do we do? We wait, sometimes close to a month for authorization from insurance for a biologic.
If you are lucky, the authorization for the medicine comes through. Then you have to schedule an appointment to learn how to correctly administer the medicine, or if you go the infusion route, then you wait for an appointment at the infusion center. Now, we wait patiently for your next attempts to feel better.
Biologics are administered on varying schedules depending on which one you take - sometimes weekly, monthly, or longer. But the one thing that they have in common is that oftentimes the effects aren’t immediate. You go through a series of loading doses spread out over a few weeks or a month. Then, it is back to waiting. We wait to see if this next medicine works. I am now three months into my second attempt at medicine, patiently waiting with each dose, to feel better.
If you are one of the lucky few, you might start to eventually feel better. Others start a cycle of trying two or three different mixes of medicines to find one that will hopefully halt the progression of damage to the joints. Once you find one that works you never really know exactly how long it will work for. Sometimes you could successfully take that medicine for years. On the other hand, your body could develop antibodies to the medicine, then you start the waiting process all over again. Does anyone see a pattern here?
So What Do We Do While We Wait?
Research - Spend some time to be an informed patient. Just proceed with caution-consider your sources of information and stop if you feel any anxiety over what you learn.
Pray - If you are a person of faith, spend some time in prayer and reflection. It is good to have a reminder that in all the waiting, you are not alone.
Write Letters - Yes, real actual pen and paper letters. Reach out to friends and family that you have lost touch with in all the business of living. Let others know you are thinking of them. Sometimes one of the best things we can do when we feel in pain ourselves is to take the focus off ourselves and reach out to provide some comfort to others.
Offer Support - There are many groups on social media, filled with people going through the same things as you, seeking solidarity and comfort. Take the time to share your experiences with others on this journey. There is a lot to be said for feeling a little less alone in all the waiting.
Living with PsA has tested my patience like nothing I’ve ever experienced in my life. And trust me, I have three small children so my patience is tested daily - I’m pretty well versed in patience. But there is something about feeling your body get worse and worse with very little control over it, while simply waiting for the next step in the process. It is no wonder that the average length of time from symptom onset until diagnosis is over 2 years. When you are dealing with a disease in which time is of the essence and the damage is irreversible, the waiting can be all the more frustrating. What are some things that you do to pass the time? Have you found yourself waiting, and waiting, and waiting?
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?