Tuesday, February 09, 2016

With and Without: Rheumatoid Arthritis and Fibromyalgia Pain





Explaining the difference between rheumatoid arthritis (RA) pain and fibromyalgia pain isn’t easy. Articulating what pain feels like is extremely difficult to begin with, adding an attempt to differentiate different kinds of pain is even more of a challenge.

I have both RA and Fibro, the latter adding on to the party in 2004. Fibro is what taught me to refer to pain as being ‘loud.’ RA pain is deep and interior, and can leave you curled up in a fetal position, not wanting to move ever again. Fibromyalgia pain can be white static that makes it impossible to focus, and can feel like somebody is blaring a fire alarm in your ear for hours.

But still, does that tell you anything about the pain itself?

I have recently had occasion to do some in-person research. I can tell you that both can involve throbbing, but that’s where the similarities end.

A bit of back story
As have been evident from my repeated whining of late, I’ve had quite a humdinger of a cold for about a month. Because of this, I didn’t take my biologic for about the same amount of time. And really surprisingly, I wasn’t feeling it. In the past, I might’ve been able to skip one cycle, but then I start feeling a change. Nothing big, but pain and that soggy feeling so unique to RA would start to encroach around the edges.

This time, nothing. I was fine. There was even a moment when I considered if I might have become one of those people that we hear about in the myths who can stop their biologic and remain fine.

Yeah, that was too much to ask for.

RA makes a visit
I saw my doctor on a Monday, and was still too sniffly and cough-y for either of us to be comfortable with adding an immunosuppressant to the mix. And I was fine, so really, there was nothing to worry about.

I should stop saying these things out loud.

The next day something interesting happened. After stepping away from the computer to have lunch, a tendon in my right forearm was in a lot of pain. And not Fibro pain. This was different. This was Serious, intense, and deep. I was a little alarmed. It felt familiar. It felt RA-ish.

But then it went away, so I stopped worrying.

Until that evening, when the snow started coming in. I respond poorly to barometric changes, it always brings pain of one kind or another, and quite substantially so.

When I went to bed, I couldn’t sleep because of the throbbing in my feet. My toes were especially affected, and I paid a bit of attention to them.

The pain was in the bones, the joints, and especially the base joints in the toes on each foot, I could feel all ten of them throbbing with the rhythm of my heart. Each throb filled the space in the joints, pushing up against the boundaries, trying to expand. It had that deep feeling again, echoes of sound waves at the floor of the ocean.

RA. Without a doubt. Instant panic.

I woke up feeling fine the next morning, but nonetheless made an appointment to get my shot as soon as possible. I’d call that throbbing a shot across the bow. No need to wait for the full onslaught.

The fibro side of things
Thankfully, the shot worked beautifully. The RA withdrew, scuttling back into its cave with a final glare across its shoulders, and a low snarl.


And then the weather changed, as it tends to do at this time of the year. And I found myself in a similar situation, lying in bed in the dark, sleep held at bay by pain.

My feet were throbbing again, especially the forefoot and the toes. I closed my eyes and paid attention, thinking I might as well make productive use of the time and try to compare this pain to the other.

It took a while. This pain was hard to parse, encompassing all of the foot. I tried to listen to the bones and the joints, but it was hard to penetrate this buzzing throb. A throb, by the way, that didn’t have that direct line to the beat of my heart that the RA throb does.

And then, somehow, it came to me. The throbbing was happening in my skin and soft tissue between the metatarsals. I could feel that v-shape of the tissue between each bone in the foot, as well as the skin surrounding it. I could feel it because it was throbbing and buzzing and stinging and so very present.

But I couldn’t hear the bones. They were a negative space between and surrounded by tissue and skin, a non-feeling, a quiet that didn’t engage with the pain.

That may not tell you much about the pain, as such. It is more a story of its origin, and the origin's influence on the quality of the pain.

How would you describe RA and Fibro pain?
  

Tuesday, February 02, 2016

The Best Way to Achieve Rheumatoid Arthritis Remission and Barriers to Its Use



Today is Rheumatoid Awareness Day. This post follows one of the blog promts from 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?

Read all posts in the Rheumatoid Awareness Day blog carnival.


  

Friday, January 29, 2016

Photo Friday: Curious Squirrel


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

Miracle & Catastrophe: Finding a Natural Remedy for GERD and Acid Reflux




Dear Trophic,

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?

Sincerely,
Lene
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.