Friday, February 05, 2016
Tuesday, February 02, 2016
Today is Rheumatoid Awareness Day. This post follows one of the blog promts from the Rheumatoid Patient Foundation:
Source: The Rheumatoid Patient Foundation
It is now possible for many people who have rheumatoid arthritis (RA) to go into remission. This in and of itself is mind-boggling to me. I grew up during a time when there were no treatments, and when the subsequent inevitability of progression lead to severe disability, wheelchair use, and often early death.
That was a bit bleak, wasn’t it? You bet it was. But it doesn’t have to happen anymore. In fact, my rheumatologist told me that she now only has two patients who use a wheelchair. And this is amazing. There is treatment that is keeping people out of wheelchairs!
That treatment as methotrexate and the Biologics, especially the latter. About a third of the people who try these meds can go into remission, and a significant proportion of the remaining may experience lower disease activity. Still, we need much more research, and many more meds, so everyone can get their disease suppressed.
Treatment approach changes
One interesting consequence of the facts that there is now treatment that can be effective is the impact it has had on the approach to treating RA. Historically, the maxim was “go low and go slow,” and doctors followed the pyramid approach. Someone diagnosed with RA would start on NSAIDs (nonsteroidal anti-inflammatory drugs), whereas disease modifying drugs (DMARDs) would not enter the picture until fairly late.
With what we know now, this is very obviously insane. NSAIDs deal with the symptoms, but do absolutely nothing to suppress the disease.
I still remember the first time I tried an NSAID. I was about 12 or 13 years old and the doctors handed me this drug which was still not approved. I still remember exactly where I was when they gave me that green and yellow capsules for the first time. That drug was Orudis (Ketoprofen), and it was an absolute miracle in terms of what it did to control my pain.
I still ended up in a wheelchair a few years later. Because it did not control the disease.
With the advent of the Biologics, treatment approach has changed. The first change is early and aggressive treatment. That means hitting the RA with everything you have in your arsenal the minute a diagnosis has been made, following the treat-to-target approach (see below). There is a small window very early on in the disease in which response to treatment is optimal. The earlier and more aggressively you’re treated, the greater the chances of remission. This is not say that you can’t go into remission later in the disease progression, but it might present more problems.
The second change to treat-to-target. This follows the approach used in treating diabetes and high blood pressure. The medication and/or the dose of the drug is continually adjusted over a period of time until the target — normal blood sugar or blood pressure — is achieved. With RA and other forms of inflammatory arthritis, the target is remission. Usually, a person will be asked to try a particular medication at a particular dose for three months or so, and then be reassessed. If there is still disease activity, the dose is adjusted or the medication changed.
Barriers to treatment are barriers to remission
Great! So everyone who is diagnosed with RA are now treated this way. Right?
Not so fast.
I still meet an astonishing number of people whose doctors are following at the very best a modified pyramid approach. And that’s barrier #1. The American College of Rheumatology has developed guidelines for the treatment of RA in its different stages. They are very clear on early and aggressive treatment following the treat-to-target protocol, indicating that methotrexate is the gold standard of first treatment.
So why don’t all rheumatologists follow this?
Well, doctors are human, too, with all the quirks, foibles, and biases that implies. Maybe they are older and stuck in a particular pattern, maybe they don’t necessarily agree with the ACR, and maybe funding sources won’t let them, especially when we are looking at Biologics.
Meet barrier #2.
Insurance companies and other sources of funding, such as various government programs, require you to go through a number of other medications, and for those medications to fail, before they shell out the big bucks.
On one hand, that is completely understandable. Why spend thousands of dollars every month for treatment, if another drug that costs a tenth of that would do the trick? Insurance companies are in the business of making money (not actually protecting you) and government sources of funding are using tax dollars. Reasons may vary, but is that when other people give you their money, they want to make sure that it’s because nothing else worked.
At its very basic, the system requires your doctor to follow the pyramid approach in your treatment. And it’s completely counterproductive.
The pyramid approach looks like it saves money, but It has a huge and initially invisible cost built into it. There is the personal cost to you and your family of the pain and illness involved in trying medication after medication that doesn’t work. Aside from incurring needless pain and suffering, this process is also more likely to allow the RA inflammation to feast on your body, causing damage to joints, organs, and more, potentially leading to disability and other medical conditions. And that’s expensive.
Preventing RA damage saves money. Preventing RA damage means you will lean less heavily on the medical system, and be less likely to have to stop working. A 2001 study of the economic implications of RA showed that the average cost per person was $10,410 per year, and that would have an incremental increase as the disease and disability worsened. Multiply that by the 1.3 million people who live with RA in the US (or by 1% of the population in whatever country you live in) and you can see how expensive the consequences can get.
I believe that in order to effect change in the treatment of RA, we need to talk more about the money. That is, the money it will cost society in the long run to not treat RA with the medications that are most likely to achieve remission. Presenting the treatment of RA as an investment in the future of the country, business, and an increasingly overburdened healthcare system, is a much more likely to make lawmakers, and for that matter insurance companies, listen. Utilizing the expensive medication now, will save millions, even billions, of dollars later. It will protect the workforce by enabling people to keep working. Working people have disposable incomes that they can invest in the economy.
In other words, using the expensive medication will actually support society and the economic infrastructure.
And then there’s this. Can you imagine what this would do for the lives of people who live with RA?
Friday, January 29, 2016
This little fellow celebrates a new feature here on The Seated View: Photo Friday! I want to get back to sharing my photos again, and what better time to do so than a week that has been ridiculously busy?
Have a wonderful weekend. There will be more words next week. Hopefully.
Tuesday, January 26, 2016
It’s damn near a miracle. And also a tragedy.
But let me start at the beginning.
Rheumatoid arthritis (RA) has always done a number of my stomach, and so has RA meds. It is a particular “blessing” to be hit with a disease that requires strong medications, and a sensitive stomach (the latter likely the consequence of the former).
I couldn’t love my biologic medications more than I already do. You should also know that I’m a bit of a side effect magnet. Enter GERD and acid reflux, two of the most pronounced side effects. Which were made worse when I had to switch my anti-inflammatory medication. Figuring out how to mitigate the fire in my midregion has been an interesting challenge. It felt like my stomach was trying to eat itself.
The last year as including quite the learning curve about what I can and cannot eat (no more gingersnaps), two trips to the emergency room with suspected heart attacks which turned out to be our two good friends GERD and Acid Reflux, and in addition to prescription medication, popping antacids and over-the-counter Zantac like candy. The latter of which are hideously expensive, and should probably not be taken in large quantities.
So I talked to my naturopath and she recommended two products. One is probiotics, which I have taken on and off for years, and found tremendously helpful for my stomach issues. I started taking them again and a larger dose than normal, but it wasn’t quite enough.
And that’s when my darling naturopath brought out another item from her bag of tricks. Namely, your Slippery Elm lozenges.
For the other people who are reading this and not familiar with this product, slippery Elm lozenges are usually meant for sore throats, and are available in different flavours. Sucking one of these lozenges helps coat and protect your throat and is hence a mainstay of singers, or so I hear.
Trophic’s slippery Elm lozenges are a little different than the others in that they also contain fenugreek. The texture is crumbly, and they taste a bit like licorice-flavoured dirt. This can initially be a little startling, but you quickly get used to it. If you like licorice, they’re quite tasty.
They are also an absolute miracle.
First you chew them, then you keep the crumbly mess in your mouth for a bit and let it blend with saliva until the sensation is a little slippery. Then you swallow.
Shortly after this, peace spreads in your midregion. Y’know, the one that was on fire, but now it is no longer. It is absolutely astonishing how well they work.
Before I encountered your Slippery Elm lozenges, I’d wake up several times at night because my stomach was a roiling vat of acid. Taking Zantac would only give me a few hours’ worth of undisturbed sleep. Now I take a slippery elm lozenge before I go to bed and sleep through until early morning. Not only that, taking one or maybe two throughout the day shuts up the constant complaining from my stomach, and actually allows me to eat. They have had a huge positive impact on my quality of life.
Naturally, you discontinued them two weeks after I’d acquired my first bottle.
This also affects my mother, who discovered these little bits of miracle at the same time, and for whom they have had the same astonishing effect. And, I can imagine, untold others who are now up a certain creek without the miracle remedy.
So, dear Trophic, I am writing this to ask you to re-continue making your wonderful Slippery Elm lozenges. Not just for me, or my mother, or the untold others who already know how wonderful it is. You see, I have friends who have the same problem. Quite a lot of friends, actually. All of whom would love to buy a few dozen bottles, as well.
What do you say? Want to help a girl out?
PS you wouldn’t by any chance have some extra cases of the stuff lying around in a corner somewhere? I’ll happily take them off your hands.
Wednesday, January 20, 2016
Earlier this week, we heard the news that Glenn Frey of The Eagles had died from complications of rheumatoid arthritis (RA), and other conditions. It was an uncomfortable reminder that this disease with which we live has a mortality risk. How do you live with that? Is it possible to create a good life with RA knowing that statistically, there are a number of things that might cut your life expectancy short?
The Facts. Ish.
Imagine I’m holding your hand. This part of the post is a bit scary.
Have you heard of the mortality gap? This term describes the shortened life expectancy of people with RA.
RA is a systemic disease. Inflammation affects not just the joints, but also other systems in the body, including organs, tendons, and the vascular system. The mortality gap has a lot to do with the effects of inflammation on those systems. We have a higher risk of heart disease and stroke, due to the impact of inflammation on the heart. We have a high risk of pneumonia, and other lung complications. There is the impact of RA in the neck. And then there are those wonderful rare side effects of the meds we take to control the inflammation.
The advent of the Biologics and their ability to cause remission, or much lowered disease activity, has had a significantly positive impact on the mortality gap. Many studies show that the mortality gap is closing. A recent study showed that in people diagnosed since 2000 (when Biologics came on the market), the risk of death from cardiovascular disease is now comparable to that of the general population. The reason for this is theorized to be Biologics.
Because controlling the inflammation controls the damage caused to joints and organs. Imagine that.
And then there is the other new study showing that women with RA have a 40% greater risk of death from cardiovascular and respiratory causes (hat tip to RA Warrior for the info).
And we’re back to freaking out.
Managing the risk
How can such different results coexist?
The study showing that women had such a dramatically increased risk of death used data from the Nurses’ Health Study, which has followed 100,000 nurses since 1976. For most of the 40 years since the study started, there were no treatments for RA. I believe that the results indicating 40% greater risk of death reflects the impact of uncontrolled RA inflammation. Compare that to the study of people who have been diagnosed since the year 2000, whose risk of death from cardiovascular causes is the same as the general population.
The difference between the two study populations is, I'm sure, access to effective treatment, greater awareness of the systemic impact of RA inflammation, and a switch in treatment approach that utilizes an aggressive approach to controlling the disease.
Still freaked out? I don’t blame you. Very few of us are the ideal RA patient, diagnosed after 2000, responding beautifully to treatment, with few effects of the disease.
So what do you do?
One, you get on top of your disease, and your health in general. You make sure that you are informed about your disease. You stay on top of your doctors so you don’t miss all the regular preventative care in the midst of the overwhelming RA diagnosis. You get in to see a cardiologist and other specialists, make sure you have an annual physical, and have detailed discussions with your family doctor about the systemic impact of RA, and what to do to manage the risk. And then you have serious discussions with your rheumatologist about staying on top of monitoring risk factors and disease activity, and get treatment that suppresses RA inflammation.
And then you live
And then you move on with your life.
You can’t live paralyzed by awareness of the risk factors and the many ways RA can contribute to your death. You don’t spend your life paralyzed by the fear of being hit by a car, despite the fact that you have a one in 11,000 chances of that (much higher than your chance of winning the lottery!).
Well, you can live like that, but it’s not much fun.
When I was a child, my parents told me I had two choices in life: I could cry or I could laugh. We all have that choice. You can spend your life focused on the terrible parts of this disease — and there are many — or you can shift your focus to that which gives your life meaning and joy.
This is not denial, because you will have those ongoing discussions with your doctors, and you will read the information that scares you. And after you read that information, you will spend several days being very aware of this fact about RA that is so very serious. Maybe even have a cry about it.
And then you will find a way to live with it. Of being enough aware of the symptoms you need to look out for that you’ll notice if you experience them, but not enough that this awareness takes over your life and all you see is risks.
You find a way to laugh. To live your life with joy, to notice all that is wonderful and bright and sunny. To laugh in the face of the disease, to make the most of this life you have been given. And when you die, as we all do regardless of the reason, you will be able to look back on your life and pronounce it a good one.
How do you cope with being aware of the mortality risk?