Why we

Why We’re Called Patients

There is the old joke that doctors “practice” medicine. This is often followed by the line about seeing one when they finally get it right. But have you ever wondered why those of us on the other side of the exam table are called patients?

An RA diagnosis in itself is an exercise in patience because it is so difficult to diagnose. The aches and pains of RA resemble other, more common, conditions. And the symptoms are transient. You might feel terrible when you make a doctor’s appointment, then feel terrific by the time you actually see the doctor. While there are some indicative tests for RA, such as RF Factor and anti-CCP, they aren’t conclusive and up to 50 percent of patients are initially negative.[i] I am seronegative and it’s very frustrating to not have clinical evidence of disease activity. In 2002 my left elbow was terribly inflamed and swollen to twice its size. While I personally think this was my first RA “attack”, it wasn’t until 2008 (six years later), after multiple doctor visits and even surgeries, that I officially received my diagnosis.

Even after a diagnosis, it takes a lot of patience to be an RA patient. Unlike some diseases, there is no set course of treatment and drug therapies can take up to three months to determine whether or not they’re effective. Imagine taking your car in for a brake job and waiting for three months for it to work. While that’s not an apples-to-apples comparison, it’s really tough emotionally to (first of all) receive the diagnosis and hear someone tell you that you have RA and (secondly) not have an immediate solution. When we go to the doctor, we want an answer of what’s wrong and a definitive plan of action to make it all better.

Sometimes, like now for me, a drug regimen that worked can stop working. This requires even more patience as you search for an alternative and experience yet another period of waiting to see if it works. I’ve been through this before. In the six years since my diagnosis, I’ve been on seven different drug therapies (now starting my eighth).

The latest test of my patience has come getting approval for the new drug. Many RA drugs, especially the biologics, are expensive and require pre-approval by insurance companies. When my rheumatologist and I agreed we needed to make a change and decided on the next therapy, her office was supposed to contact the infusion company who handles the insurance filing and sets up the appointments. After a week of not hearing anything, I called my doctor’s office back. The physician’s assistant, who is new to the practice, had neglected to send the orders. We got that sorted out but it’s now a week later and I still haven’t heard anything. Now I’m calling the infusion company directly (and talking to voice mail). This will work itself out in due course, but what little patience I have is wearing thin. I still have RA. I still have all the pain and stiffness. I just don’t have the drug treatment to help slow it down. And when I do get it, I won’t know if it will work (at least for a while).

A comorbidity is a secondary condition that happens in conjunction with or as a result of a primary condition. For example, you might have RA and also have hip bursitis. I’ve decided that patience is a comorbidity of RA. If you don’t have patience before your diagnosis, you certainly develop it as a result of having RA.1

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. http://www.uptodate.com/contents/diagnosis-and-differential-diagnosis-of-rheumatoid-arthritis

Comments

View Comments (7)
  • Kelly Mack moderator
    5 years ago

    Totally relate to your post Carla. It takes a LOT of patience to be an RA patient. Sometimes medical providers and others just don’t understand that when you have a painful disease, it is not an added pleasure to jump through hoops and wait long periods to start treatment. Thanks for sharing your experience!

  • Carla Kienast author
    5 years ago

    Kelly: You are the poster child for patience! I can’t imagine going for weeks and weeks without a knee joint. Thanks for the post.

  • Carla Kienast author
    5 years ago

    Thank you, Connie. As you point out, we need all our resources to fight this disease — not only physical but emotional and spiritual as well.

  • Connie Rifenburg
    5 years ago

    Your post makes so much sense to so many of us whether it’s in a slow diagnosis (thank goodness my RA # screamed off the page) or the trial and error of the traditional drugs (adding this drug, subtracting this drug, 2 in the morning or 3 at night, and so forth) Then if/when they don’t work, weaning off them so you can try something else. Oh, and ofcourse the side effects…can we live them? do we WANT to live with them, do we HAVE to live with them or is there something else to try.

    Sometimes I wonder if people on the outside understand how frustrated WE are at this whole up and down lifestyle? It’s difficult to call upon patience when you’re hurting.

    I live alone, and altho I have family who CAN help, I try not to use their assistance unless I simply can’t do it myself. I personally know the frustration of dealing by phone with the insurance approvals, the specialty pharmacy tech (technician is not always the right word I’d use…more like receptionist!), and in my case, the financial cost of the biologic.

    I have written in the past about my trials to get funding for Orenscia which seems to be the only drug that keeps me from being completely bedridden. It has that dramatic an effect on my RA.

    But every year I begin in late December, calling all the different foundations that assist with financial medical needs. Even with Medicare and an Advantage plan, Orencia’s co-payment to me is $374/mo <—down from years past of $6-700/mo. The "cost" of the drug has ranged from over $2500/mo to $1600/mo through the insurance agencies. 2014 found me unable to find any monies left with foundations and unable to afford the monthly infusion for 3 months while I called and wrote letters, and begged for help to get back on it. [most funding is for one yr and has to be renewed every Jan].

    The Orenscia – for me – takes about 3 months to get into my system, and remains about 6 months at the most, if I have to stop it. I gradually go back to an invalid within 6 months of going off the infusions. We know this because the 1st yr it took 6 months to get funding.

    Because Biologics are so expensive, no pharmacy will allow you to pay on time, or be billed over the year (not that I could afford to cover $6,000./yr anyway)

    I wish … well, "if wishes were fishes, we'd all be well fed." Let's just say that patience is a necessity, not just a virtue for RA patients.

    I will say that this year, after a lot of begging, crying, writing letters, getting my Dr involved, Bristol Myers, who makes this drug, agreed to fund me for the rest of the year. That was in March 2014. My last infusion had been in Dec. 2013.

    By the time I got back on the infusion, I was up to almost 60mg of Prednisone to control the inflamation, plus other things treating fibromyalgia, etc, etc. During those 3 months, I gained the always wonderful weight from steroids, and had to begin the digression of them as the Orencia took over. (which is a hell in itself).

    For those with faith, I refer to this (tacked on my bboard)
    2 Corinthians 12:7-10 "The apostle [Paul] gives an account of the method God took to keep him humble, and to prevent his being lifted up above measure, on account of the visions and revelations he had. We are not told what this thorn in the flesh was, whether some great trouble, or some great temptation. But God often brings this good out of evil, that the reproaches of our enemies help to hide pride from us. If God loves us, he will keep us from being exalted above measure; and spiritual burdens are ordered to cure spiritual pride. This thorn in the flesh is said to be a messenger of Satan which he sent for evil; but God designed it, and overruled it for good. Prayer is a salve for every sore, a remedy for every malady; and when we are afflicted with thorns in the flesh, we should give ourselves to prayer. If an answer be not given to the first prayer, nor to the second, we are to continue praying. Troubles are sent to teach us to pray; and are continued, to teach us to continue instant in prayer. Though God accepts the prayer of faith, yet he does not always give what is asked for: as he sometimes grants in wrath, so he sometimes denies in love. When God does not take away our troubles and temptations, yet, if he gives grace enough for us, we have no reason to complain. Grace signifies the good-will of God towards us, and that is enough to enlighten and enliven us, sufficient to strengthen and comfort in all afflictions and distresses. His strength is made perfect in our weakness. Thus his grace is manifested and magnified. When we are weak in ourselves, then we are strong in the grace of our Lord Jesus Christ; when we feel that we are weak in ourselves, then we go to Christ, receive strength from him, and enjoy most the supplies of Divine strength and grace. " (from Matthew Henry's Concise Commentary)——-A favorite of mine on bad days

    2 Corinthians 12:7-10 "The apostle [Paul] gives an account of the method God took to keep him humble, and to prevent his being lifted up above measure, on account of the visions and revelations he had. We are not told what this thorn in the flesh was, whether some great trouble, or some great temptation. But God often brings this good out of evil, that the reproaches of our enemies help to hide pride from us. If God loves us, he will keep us from being exalted above measure; and spiritual burdens are ordered to cure spiritual pride. This thorn in the flesh is said to be a messenger of Satan which he sent for evil; but God designed it, and overruled it for good. Prayer is a salve for every sore, a remedy for every malady; and when we are afflicted with thorns in the flesh, we should give ourselves to prayer. If an answer be not given to the first prayer, nor to the second, we are to continue praying. Troubles are sent to teach us to pray; and are continued, to teach us to continue instant in prayer. Though God accepts the prayer of faith, yet he does not always give what is asked for: as he sometimes grants in wrath, so he sometimes denies in love. When God does not take away our troubles and temptations, yet, if he gives grace enough for us, we have no reason to complain. Grace signifies the good-will of God towards us, and that is enough to enlighten and enliven us, sufficient to strengthen and comfort in all afflictions and distresses. His strength is made perfect in our weakness. Thus his grace is manifested and magnified. When we are weak in ourselves, then we are strong in the grace of our Lord Jesus Christ; when we feel that we are weak in ourselves, then we go to Christ, receive strength from him, and enjoy most the supplies of Divine strength and grace. " (from Matthew Henry's Concise Commentary)——-A favorite of mine on bad days

    Carla, here's hoping that you are well on your way to getting the right treatment and relief of your "thorn" for a while. 🙂

  • Connie Rifenburg
    5 years ago

    whoops, I accidentally posted Matthew’s verses twice. Could someone one tell me how to delete one of them, or how to edit my post after hitting send? THANKS. and sorry for the extra-long post.

  • Darla
    5 years ago

    Great post Carla. I have felt the same way & now on Placquenil . Hoping for some
    relief soon. Told May take 3 to 6 months. Good luck on your new drug treatment.

  • Carla Kienast author
    5 years ago

    Darla: Good luck with your treatment plan. Don’t let it try your patience/patients!

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