It can be scary to think about changing your treatment plan. In my most-recent article for rheumatoidarthritis.net, I provide some food for thought and discussion about deciding when it’s time to make changes. https://rheumatoidarthritis.net/living/when-is-it-time-for-a-new-treatment-plan/
Insurance companies have different rules for covering drugs depending on whether you get them from a pharmacy and administer them yourself, whether you receive them at a doctor’s office, or whether they’re administered in a hospital or similar health facility. My recent experience cost me an extra $120 just by walking across the street. Read more here: https://rheumatoidarthritis.net/living/same-drug-different-cost/
May is Arthritis Awareness Month. Usually starting in April I get inquiries from various groups asking my help in raising awareness of RA and other arthritic conditions. I don’t mind helping out a good cause, but I tend to point out (rather obviously, I think) that people who read my blog are already aware of arthritis. We don’t need reminding. In fact, what most of us want is to become UNAWARE of arthritis. We want all the pain, stiffness, fatigue and other symptoms and especially medical bills to just disappear so we are completely unaware that we’ve ever had the disease.
(This reminds me of the story of Johnny Cash when he played Folsom Prison. He was told not to sing any songs that reminded the men that they were in prison. His wry reply was along the lines of, “Why? Do you think they’ve forgotten?”)
Most of us are caught in the dichotomy of wishing people understood our disease better and going to great lengths to keep it invisible to other people. It’s a tough balance.
I do what most of us do. I show up when I’d rather lie down.
Invisibility is important to many people for lots of reasons. But awareness is crucial for a lot of important reasons, too.
I don’t necessarily want to repeat myself fully here, but in honor of Arthritis Awareness Month, I invite you to read a favorite post of my entitled, “Being (In)visible” at RheumatoidArthritis.net. https://rheumatoidarthritis.net/living/invisible/
Thanks for checking in.
I used to have a sign on my desk that said something along the lines of,
“I know you believe you understand what you think I said, but I’m not sure you’re aware that what you heard is not what I meant.”
Being a professional communicator for the majority of my career, I can tell you that it’s both about putting out the right message AND making sure that your audience hears and understands it. It’s amazing how a conversation between two people can be understood so completely differently by the people having the conversation. This happens between spouses, boss and employees, and certainly parents and teenagers.
IMHO, miscommunication is never more critical, however, than between doctor and patient. The amount of this miscommunication to me is astounding.
Earlier this week Pfizer issued a news release about the results of their latest findings through its global RA NarRAtive survey that assessed the quality of physician-patient communication and its relationship to RA disease management. The survey involved more than 1,700 rheumatologist in 15 countries and demonstrated disconnects between patients and physicians across multiple aspects of RA disease management.
What’s weird is that both physicians and patients agree that better communication means better disease management, yet significant gaps exist. I invite you to read the release and learn more about the RA NarRAtive via the links above, but here is an infographic that summarizes many of the important findings:
Sometimes you read something and you just want to say, “Well, duh!” because you think it’s so completely obvious you wonder why it’s making headlines in the first place.
The headline of an article I read recently is, “Persistent RA Activity Predicts Major Surgery — Researchers stress importance of securing low disease activity”. To an RA patient, achieving low disease activity (or even remission) seems not only obvious, but the Holy Grail of treatment objectives. It’s almost unbelievable that anyone would think otherwise. And if RA isn’t controlled, a logical outcome can be major joint surgery. So why does it take a major study to state the obvious?
There are some very significant reasons for this.
Read the rest of this article here: https://rheumatoidarthritis.net/living/well-duh-obvious-studies-important/
I just returned from a wonderful trip to the United Kingdom that included both England and Scotland. I’ll post more about those adventures and meeting up with the great Pollyanna Penguin in a later post.
As much as I think the UK and the US are similar, I am simultaneously surprised and delighted by the differences. Some of the things are subtle and you don’t notice them at first. Eventually I realized that I hadn’t seen a single television commercial for any prescription medications at all. (I am assuming that has a lot to do with nationalized medicine.) Then I realized that I seldom even saw commercials for over-the-counter drugs. But there was one that really caught my eye, and that was for Syndol, which is a pain-relief tablet that contains 8 mg. of codeine. Yes, codeine. That close cousin to hydrocodone that Healthline.com reports is abused more than any other drug in the United States. In 2014, the FDA expanded regulations on codeine products and nearly all require prescriptions today.
To satisfy myself, I went to the local Boots (a popular British pharmacy chain) and purchased a small box of the product. It was about $5 US for 10 tablets. It contains 500 mg. of paracetamol (the UK equivalent of acetaminophen or Tylenol), along with 8 mg. of codeine and 30 mg. of caffeine to help the drug work faster. Interestingly enough, the medication was recently reformulated – not to adjust the codeine levels, but to remove doxylamine. Doxylamine is an antihistamine and a sedative that is readily available in the US in such products as Nyquil and Unisom.
Okay, so codeine is not as strong as hydrocodone, but while it is an effective pain medicine, it is also an addictive opioid. I thought at first that the UK was not as concerned about the war on drugs in general and opioids specifically as the US, but a search of headlines proved that was incorrect. According to BBC, more than 3,300 people died in the UK from drug poisoning in 2014. But of these, the vast majority — two-thirds — (2,248) were from illegal drugs (including heroin and methadone). Of the remaining one-third related to legal and/or prescribed drugs, only 136 were related to codeine. (Tramadol accounted for 248 cases and diazepam, i.e. Valium, was linked to 258.)
I think what strikes me the most is that even with (or perhaps because of) the restrictive national health system in the UK, people who require pain medication are given easy access to not only basic pain medications (such as Tylenol and aspirin) but also more robust medications (including opioids) and the abuse rate from these medications is amazingly low. Syndol is just one example. I also found Voltarol gel over the counter, which is effectively the same as Voltaren gel for which I have to have a prescription in the US.
My point in all this (if there is a point), is that drug regulation needs to not only control drug distribution, but it must play a key role in helping ensure that people who need drugs, including pain medication, have reasonable access to them. Perhaps by looking at other countries’ experience and examples, such as that of our UK allies, we can help achieve that balance.
I hope today is a pain-free day for you. Thanks for checking in.
You know that question they ask? The one where they want you to rate your pain on a scale from one to ten. Sometimes there’s even a chart with a smiley-faced “one” that progressively changes into a very unhappy “ten”. I hate that question. First of all, the person asking it may not really care, they’re just filling out a form. Secondly, RA-related pain can vary not only from day-to-day but minute-to-minute, so how do you quantify it?
I once built my own pain scale based around Disney’s Seven Dwarfs. The scale ranged from “Happy”, meaning no pain, to “Doc” when it hurt badly enough to see a doctor, to “Dopey” when I had to take enough pain medicine that I wasn’t functioning very well. It wasn’t any more useful than the “one-to-ten” scale, but it was a lot more fun.
Doctors and patients both will tell you that pain is very subjective. What is extremely painful for one person can be perceived as mildly painful for another. There is a lot of discussion of why this is including individual tolerances for pain as well as associated emotional elements. And while perception really is often reality, it seems that it would helpful for everyone if there were clinical, quantitative ways to actually measure pain.
Which brings me to something very interesting that’s been happening to me.
Read the rest of the post here: https://rheumatoidarthritis.net/living/can-pain-be-measured/
Unfortunately I’m not talking about yummy vegetables or fragrant blossoms. I’m not even talking about gorgeous fingernails or long, lustrous hair.
I’m talking about weird lumps and bumps and things I’d rather not have.
I have already documented the cysts that showed up on my mammogram. Enough said about those.
Around the same time that those appeared, I was undergoing physical therapy on my left calf. My therapist found a rather large (painful) nodule on my tendon. As she put it, I have nodules where I’m not suppose to have them. Since then, there have been some smaller nodules show up in the same area.
And most recently, I had a sonogram which revealed a small nodule on my thyroid glad. We’re discussing a CT scan or MRI next. Thyroid nodules aren’t that unusual, especially as you get older — except for the fact that I’m on a drug that causes thyroid cancer in animals and may contribute to it in humans.
I will probably have Achilles tendon/ankle surgery in early summer and those nodules will get addressed then if they, in fact, need anything more than to be left alone. I have my annual physical in about a week and we’ll discuss the thyroid concerns at that time (and we’ll have my thyroid labs back by then as well).
Individually, none of this is very concerning and none of it seems to be directly related to RA. It’s just weird that I seem to be growing these weird lumps and bumps all at once. These have all popped up in the last 60 to 90 days.
I hope whatever lumps or bumps show up in your life are the result of wonderful adventures. Thanks for checking in.
For whatever reason, I’ve lately been reading a lot about the effectiveness of triple therapy for rheumatoid arthritis. The triple-therapy study was first presented at the European League Against Rheumatism Congress 2013 and published online June 2013 in the New England Journal of Medicine to coincide with the presentation. Triple therapy, which consists of three well-established DMARDs: sulfasalazine (a sulfa drug), hydroxychloroquine (Plaquenil), and methotrexate, was shown to have comparable benefits to a combination biologic/methotrexate therapy. (http://www.medscape.com/viewarticle/806430) These benefits included disease measures, function, and radiographic progression. All this boils down to saying the triple-DMARD therapy worked as well as a biologic/methotrexate combination.
So, if one is as good as the other, what’s the excitement? In 2013, the triple DMARD therapy was estimated to be more than $10,000 less expensive per year than the biologic-based choice. Given the rising cost of health care, that difference has no doubt increased since then.
The good news?
Read the rest of this post here: https://rheumatoidarthritis.net/living/good-news-bad-news-triple-therapy/
In the movie, The Counselor, Cameron Diaz’s character is accused of making a “cold” comment. She responds (paraphrased), “It’s the truth. Truth has no temperature.”
While I have a love/hate relationship with that movie, I love the quote. The truth is what the truth is. However, I’ve come to understand that we seldom (if ever) have the whole truth of any situation.
You may be familiar with the story of the blind men and the elephant. The blind man who felt the elephant’s trunk thought elephants were like snakes. The blind man who felt the elephant’s legs thought elephants were like trees. The blind man who felt the animal’s ears thought elephants were like fans. And so forth. None of them were wrong, but neither were they all correct either. They just didn’t understand the entire truth of the elephant.
Similarly if a botanist who studies plants, a zoologist who studies animals, and geologist who studies the earth were to visit the same remote island, their findings would be quite different. It’s not that they visited somewhere differently, it’s that their experiences are filtered by their perspectives.
I am feeling like that elephant or that island.
I have been sorting through my medical records relating to my disability claim. I have one doctor who sees me as a hip and knee replacement, another who sees me as a shoulder replacement and rotator cuff surgeries, another who sees me as torn retinas, yet another who sees me as a high blood pressure / high cholesterol patient. Even my (wonderful) rheumatologist sees me through the lens of RA. I have twelve different doctors that I see on at least a semi-regular basis, and they all see me differently based on their specialty and the condition for which they treated me. Even my primary care physician, who has the closest thing to a holistic overview to me as a person, tends to see me as a snapshot or perhaps a transverse slice. They treat me for what I need that day and, while I try to keep them in the loop with what’s going on elsewhere, they only really have glimmers of the rich tapestry of medical attention I get outside their office.
Unfortunately, unlike the elephant or the island, I need to be seen as a whole person with all my warts and titanium. It’s critical to build an understanding of my overall health picture so that (1) my health care providers understand any complicating factors and (2) the disability insurance people get a clearer picture of my capabilities (or lack thereof).
Wish me luck. Sometimes I feel a lot like the blind leading the blind (elephant).
I hope that whatever elephants are in your room today are friendly ones. Thanks for checking in.