Rock versus hard place

In my last post, I talked about different treatment options that can help to slow, or even stop, the damage caused by certain types of arthritis.  These therapies can make a huge difference in the lives of people with arthritis, but did you know that the side effects also pack a mean punch?  This is week five of ‘things you might not know about arthritis’.

One of the last medications that my mom tried was methotrexate, which is a disease-modifying anti-rheumatic drug (DMARD) that can be taken either as a pill or by injection.  Methotrexate is only taken once a week, and doctors recommend that it be taken on a “less demanding day” because some people feel unwell for up to 24-48 hours after taking it — such as headaches, feeling tired, nausea, or loss of appetite.  Additional effects are numerous, although rare, and include everything from increased sun sensitivity to hair loss to liver damage.

My mom didn’t talk to me very much about her medication, and to be honest, I rarely asked.  We lived 350 km apart, and so I didn’t see her day-to-day struggles first hand.  When we spoke, she wanted to talk about happier things.  We only started to talk about methotrexate after she started to experience a host of other health complications that landed her in the hospital for her 61st birthday.  Her problems were ultimately chalked up to an inappropriate combination of meds that threw her blood counts into complete disarray and caused her to feel terrible all the time, all of which happened after her doctor increased her dosage of methotrexate to help address the progression of her rheumatoid arthritis.  She eventually got things sorted out, but only after months of juggling pills and feeling awful — awful from the side effects of her meds, and awful from the pain and inflammation of RA while she waited for the meds to do their job.  Rock, meet hard place.

I know this doesn’t reflect everyone’s experience.  I also have no doubt that methotrexate would have helped my mom much more if it had been available earlier in her life.  Nevertheless, it speaks volumes to me that this treatment is one of the best options available, given what she had to go through to make it work.  It may well be effective, but at a cost.  And it isn’t as easy as just remembering to take a few pills.

I wish I had asked more questions and showed more compassion.  I wish she had told me more, so that I could have shaken off the assumptions I carried for many years just because they were never challenged.  But I understand better now, and I hope you do too.  Cheers.

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Hurry up and wait!

I’m late! Indeed, I am overdue in delivering week four of ‘things you might not know’!  This won’t actually shock anyone who knows me.  I’m always late paying parking tickets, and it’s virtually guaranteed that I will never return a library book on time.  I’m also behind on my running program, but that’s a story for another day.  Alas, this week, you’ll get back-to-back posts to make up for my tardiness.

Sometimes, it really doesn’t pay to be late, particularly when it comes to being diagnosed with arthritis. I have mentioned here before, inflammatory arthritis (such as rheumatoid arthritis) needs to be treated early and aggressively.  But did you know that some of the most effective medications can take weeks or even months to show results, and multiple medications might be needed to control the disease?  Here’s a great analogy from an Arthritis Society publication:

“Think of arthritis like a fire in the joints.  Imagine there was a fire in your kitchen. If you left it burning, it would eventually destroy the kitchen and likely spread to other rooms in the house. The same is true for rheumatoid arthritis. If you leave the fire of arthritis burning, it will eventually damage the bones and cartilage. The idea is to get the fire put out as quickly as possible to prevent the joints from becoming damaged. Again, if your kitchen was on fire, it might take two or three fire trucks with their hoses to put the fire out. The same is true for arthritis. It might take two or three different medications to put the fire out.”

There are many promising treatments available that can slow, or sometimes even stop, the progression of the disease.  Disease-modifying anti-rheumatic drugs (DMARDs) are a class of medications used to treat inflammatory types of arthritis, such as rheumatoid arthritis. DMARDs slow down the biologic processes that cause the persistent inflammation (pain, swelling and stiffness) in the joints. DMARDs are important because they help to prevent damage to the joint.  (Unfortunately, DMARDs cannot fix joint damage that has already occurred.)  The challenge is, DMARDs generally work well but they take time to work. Most DMARDs will start to work in about six to 12 weeks, but some may take longer – up to three or four months.

Likewise, biologics are a class of medications specially designed to treat inflammatory types of arthritis.  Like DMARDs, biologics are used to suppress inflammation and help prevent damage to the joint, and the two can be combined.  But biologics also take time to work. Some people may notice the effects of the medication  within days or weeks, but others may take three to six months to feel the effects.

Six months is a long time to wait if your house is on fire.  That’s why early diagnosis and treatment is so important.  It’s also why continued research into arthritis treatment is necessary, hopefully to develop new treatment options that will work faster, to help minimize the amount of permanent damage that people suffer.

Thanks for reading.  Stay tuned for the next instalment.  I won’t make you wait so long this time 🙂

Did you know? Arthritis ain’t cheap.

This is week three of ‘things you might not know about arthritis‘, which means there are only 40 weeks left until the Lausanne marathon!  In turn, this means that I am on the verge of complete panic about my ability to train well, owing to an annoying foot thingy that I’ll tell you about another day. For today, I wanted to tell you – in case you didn’t know – that arthritis ain’t cheap.

Earlier this week, I read an unnerving news story about a study which says that one in 10 Canadians have trouble paying for their prescription medication. The study points out that when patients are unable to afford their medications, it can lead to higher costs down the road for the health care system. That was a stark reminder for me about the cost of arthritis, not just in terms of the health effects it has on those who have the disease (and their families), but of the economic cost to society.

In late 2011, the Arthritis Alliance of Canada released a study which reported that arthritis is the most common cause of disability in Canada, and has a significant impact on costs to both the public health care system and the economy. The study estimates that osteoarthritis (OA) – the most prevalent form of the disease – and rheumatoid arthritis (RA) cost the Canadian economy $33 billion through direct healthcare expenses and indirect lost productivity and taxes. CBC did this report when the report was released last year, if you’re not inclined to read the whole study.

Perhaps more importantly, the study also clearly states that “Without a doubt, arthritis’ greatest burden is on the personal lives of those living with the condition and on the lives of their families.” There’s no doubt in my mind that this is true, and it reminds me how important it is to share information, so we can  try to change that. Thanks for reading 🙂

Did you know? Kids get arthritis too!

Welcome to week two of ‘things you might not know about arthritis‘!

Did you know that arthritis isn’t just an ‘old person’s disease’.  According to the Arthritis Society, arthritis is one of the most common chronic illnesses affecting children and affects 1 in 1,000 Canadian children under the age of 16.  That’s a lot of kids.

Kids with arthritis face unique challenges compared to adults.  This story describes some of those challenges, including the very real problem that some people don’t believe kids when they say they have arthritis. It also describes an awesome summer camp organized by the Arthritis Society, where kids spend time with other kids just like them who are learning to manage the disease.

In this video, Amanda describes some of the treatment that kids like her go through.

And in this video, you can learn more about how kids’ lives are affected by living with arthritis, in their own words – which are more powerful than anything I could write. It’s worth taking a few moments to watch, and to remember that arthritis affects more people than we realize – both young and old, and in between.  They all need your support.

That’s it for this week.  Check back next week – you might learn something new!

It’s not all about the money

Since I started my Joints in Motion campaign, several people have asked me what else they can do to support my campaign, in addition to making a financial donation.  What an awesome question! (And one that I wouldn’t otherwise have thought to write about, since I’m not very good at asking for things.)

Here are few ideas:

Tell a friend.  Better yet, tell more than one!  You can share the links to my  online donation page, to this blog, or to my Facebook page.  The more people who know, the more people who can help!  And then they tell two friends, and they tell two friends, and so on … anyone else remember that commercial?

Tell your company.  Businesses can donate too!  Tax receipts are issued for all donations of more than $15.  Some companies even have matching donation programs where they will match a personal contribution that you make.  Cool eh?

Make suggestions.  There are limits to my creativity, and I would welcome your fundraising ideas.  Maybe you have something you could donate for a silent auction?  Or perhaps you have an idea for a special event to raise money?  (That doesn’t mean you have to help me organize it, but that would be cool too!)  Some options might be more practical for me than others, but it all starts with a gem of an idea.

Spread the word.  My Joints in Motion journey is about raising awareness as well as funds.  Share what you know about arthritis, especially if you learn something new, so others can learn too.

Be supportive.  Sometimes I’m my own worst enemy.  A well timed  hug or a kind word means more than you can know 🙂

Remember that I appreciate every contribution that you make, big or small.  It all makes a difference.  Thank you!

The answer to the ultimate question

Of course, the answer is 42.  If you’re not a rabid fan of the Hitchhiker’s Guide to the Galaxy, you can learn more about it here and here.  For the purpose of this post, I just accept that the answer really is 42, at least for today anyway.

Clearly, 42 is the number of full kilometres in a full marathon.  (No disrespect intended to those last .2 kms — I hear they’re a really bugger.)  More importantly, today marks 42 weeks until I run a marathon in Lausanne, Switzerland!  In honour of this quirky fact, I am launching 42 (.2) things you probably don’t know about arthritis.  Each week for the next 42 weeks, I’ll post something new, as part of my goal to raise awareness about arthritis.

The first thing you might not know is that there actually more than 100 kinds of arthritis.  These include everything from relatively mild forms of tendinitis (like tennis elbow) and bursitis, to crippling and systemic forms such as rheumatoid arthritis.  There also also pain syndromes like fibromyalgia and arthritis-related disorders, such as lupus, that involve every part of the body.  There are other forms of the disease, such as gout, that almost nobody connects with arthritis, and other conditions – like osteoarthritis – that many people think is the only form of the disease.  The common denominator for all these conditions is joint and musculoskeletal pain, which is why they are grouped together as ‘arthritis.’

With all these different forms, it’s quite likely that someone you know is directly affected by some type of arthritis. They might not talk about it and you might not even know they have it, but for those people who have some form of arthritis, it’s very real and can have a huge impact on their lives.

That’s it for this week.  Check back next week – you might learn something new!

Happiness is a tired puppy

I’ve been feeling quite under the weather for the past while, and haven’t had the mental capacity to write a good post.  So instead, I thought I’d share a happy picture, because who doesn’t love a picture of a cute dog?  This is Zwin, my 8-year-old Belgian shepherd.  He loves to run.

Belgian Shepherd in the grass