DMARD Notation

Do you ever read medical articles (or your doctor’s notes) and ask, “What does THAT mean?!”  RA patients soon become adept at interpreting the special language used to discuss treatment of their disease. We have to keep current, though, because as science makes new discoveries, those discoveries will be incorporated into medical practice and into journal articles.  It can be startling to suddenly come across new terminology.

When we are first diagnosed, we quickly learn the term DMARD:   Disease Modifying Anti-Rheumatic Drug.  We learn that these are traditional pills whipped up in the laboratory, including things like hydroxycholorquine (hcq), methotrexate (mtx), and sulfasalazine (ssz).

When I was first diagnosed, there was a relatively new term BRM: Biologic Response Modifier. Biologics (enbrel, humira, remicade, etc.) are the big guns that doctors go to when traditional DMARDs aren’t enough.  They’re still DMARDs, just a more powerful kind. Things have changed, and although more and more biologics are available, we just don’t see the term BRM any more.

The terminology seen now tacks a few lower-case letters onto the front of the DMARD to designate specifically which type:

csDMARDconventional synthetic DMARDs are those traditional small-molecule medications synthesized chemically: methotrexate, sulfasalazine, hydroxychloroquine, leflunomide, gold salts, etc.

tsDMARDtargeted synthetic DMARDs target a specific molecule.

bDMARDbiologic DMARD is the term used instead of BRM. Biologics are living cells – think genetic engineering, rather than mixing chemicals in a beaker.  These can be broken down into two types of biologics:

  • boDMARDs are original biologics
  • bsDMARDs are biosimilars

It will be interesting to see what new discoveries await.  I wonder how the notation will have changed in another ten years.

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Making Life Easier

RA can make it challenging to accomplish tasks that we once considered easy.  Rather than struggle and be frustrated, or give up activities we enjoy, it makes sense to adapt.

Opening Doors – Just say no to doorknobs.  Save your pennies, then swap out those pesky knobs for levers that work even when your hands don’t.

doorhandle

If you have significant issues with doorknobs and can’t afford levers, get creative. Occasionally a business will change out all the locks in their building – and will change all the levers, even those that don’t lock, so that everything matches.  They work perfectly well, but there isn’t much market for used commercial door hardware. If approached right, some locksmiths might give you a bargain (as long as you realize that it’s clunky, commercial hardware and not the lightweight stuff you normally find in houses).

Laundry – First, get a good sorter and train everyone in the house in its use.  I keep my three-bin sorter in my laundry room and taught the kids how to separate their clothes into whites/mediums/darks as soon as they were able to dress and undress themselves.  If I could do it over again, I’d get a fourth bin for denim. We do have a separate bin for clothes that require cold/delicate handling. This method makes things much easier because I don’t have to bend and reach and go through various contortions to retrieve everyone’s dirty clothes and sort them into their respective loads.  When a bin is full, I dump things into the washer. It’s that easy.

That said, there are different styles of sorters.  I highly recommend finding one that has separate bags that lift off the frame, not a single bag with multiple compartments. This will allow you to pick up the bag and empty it into the washer, rather than having to bend over multiple times to dig every last sock out of the bottom of the bag!

In an ideal world, only dry items would go into the sorter, but in the real world, children toss wet socks and washcloths into the sorter and eventually the bag mildews.  Therefore, I highly recommend getting the style that has bags which easily slide off their hangers.  This means that the bag can be tossed into the washing machine and dryer along with the clothes.

laundrysorter

My other laundry tip has to do with detergent.  If your hands or shoulders get to the point that pouring detergent into the washer is difficult/painful, spend the extra money for individual pods.  I’m pretty frugal (I have five children, so can’t afford to throw away money), but have decided that these convenience packs are worth every penny.  It works out to 15 cents per pod; I use one in most loads, but two on socks and dirty jeans.  There is a similar option for dishwasher detergent.

laundrydetergent

Hanging Rods – Closets with rods that hang at (or above) eye level are poorly designed, in my opinion, and not a friend of anyone with shoulder issues. If you have trouble reaching up to hang your clothes, consider modifying things so that you can hang your clothes at waist height.  Fortunately, my closet has rods at two heights; when my shoulders started causing problems we swapped things around so that my husband had all the top rods, and I got all the lower ones that I could reach easily.

closet

Berry Picking – There’s nothing like trekking up into the mountains to get huckleberries.  The peace and quiet, back-to-nature, time with the family… it’s heavenly. Months later you get to re-live the pleasant memories while enjoying the berries you’ve preserved. Unfortunately, huckleberries are tiny little things (half-the size of a blueberry), and not always easy to grasp.  This year I discovered two tools that I love.  While I used them for huckleberries, they’d also work on blueberries, gooseberries, and various other berries (not so great on wild blackberries, imo, but cultivated ones might be okay).  Do these tools work?  I have five gallons of huckleberries in my freezer for us to enjoy all year long. 🙂

The first tool I found is oh-so-imaginatively called a berry picker.  You just stick it under the branch, then gently comb along the branch from the center of the bush out. The berries fall into the picker, while the leaves (mostly) stay on the bush.  A little debris gets mixed in with the berries, but it’s quite easy to shake the container gently and get the leaves to fall out.

berrypicker

The second tool is made by the same company, and just as creatively named:  berry cleanup tray.  This was not something I planned to purchase, but it was suggested when I ordered my berry picker.  I don’t usually fall for those gimmicks designed to part you with your money, but this had very good reviews and my Raynauds-afflicted hands do not appreciate being immersed in cold water.  After some experimentation, I discovered that the most efficient method is to pour the dry berries into this tray and shake it gently.  Most of the debris will fall out of the tray (exactly as designed).  I then grab my blow-dryer and turn it on the low/cool setting; this blows the remaining debris off of the huckleberries. Note that this method is best used on dry berries.  Wet leaves stick to huckleberries and the tray.  It’s a pain.  First get rid of the debris, then rinse the berries after all the leaves and twigs have been removed.

berrycleaner

Don’t struggle, making tasks harder than they need to be, and don’t give up things you enjoy.  Invest in tools that will allow you to do the things that you both need and want to do.  What are some gadgets you’ve discovered that make life easier?

Yes, it matters what we eat!

The science is clear. It matters what we eat.  Research that is especially pertinent to people with any type of autoimmune arthritis is the apparent link between diet and inflammation.  Barry Sears, PhD, calls RA (and other types of autoimmune arthritis) “screaming inflammation.”  He also claims that it’s possible to stop the screaming.  Unfortunately, he doesn’t go so far as to claim a cure.

Between mtx, ssz, and a biologic, my RA symptoms seem to be mostly under control.  It’s taken a while, but I’ve discovered that when I make different nutritional choices, I can drop the “mostly” from my “mostly under control” statement.

In pursuit of better health, I’ve been changing the way I eat.  Honestly, it’s a struggle.  Food choices are habits, and like any other habit, it’s hard to break.  Add to that the fact that I have a family.  If we go three days without any grain products, they all start begging me to bake bread!

I am discovering that I must plan.  Without menus planned in advance, I wander around the kitchen and grab easy foods, then get hungry and snack between meals, and it’s a terrible cycle that perpetuates itself and makes me feel awful.  Planning makes a world of difference.

But what to plan?  Unless my goal is to join the circus as the fat lady who can’t walk, planning to eat cinnamon rolls is a bad idea.  Although many diets count carbohydrates, newer research also considers the glycemic load of carbohydrate-containing foods.  It’s not just the number of carbohydrates, but the amount of insulin your body needs to produce to metabolize the glucose from those carbs.  The goal is a slow, steady release of glucose, not a dump-it-all-at-once release which then leads to a crash.  Have you ever eaten a sugary snack, then needed a nap?  That’s due to the snack having a high glycemic load.  The Insulin-Resistance Diet, The Anti-Inflammation Zone, and Grain Brain are unanimous in recommending that people control their glucose levels.  Meal plans need to consider glycemic load.

This is incredibly important for anyone with RA, because it turns out that not only does dumping glucose into the bloodstream leads to a release of insulin, this release of insulin stimulates the body to make arachidonic acid, which is a building block of inflammatory proteins.  Dumping glucose increases inflammation.

Glycemic Index and Glycemic Load

Controlling the release of glucose into the bloodstream is important.  The rate at which that release occurs is quantified by a number called the glycemic indexFor fats and proteins, the glycemic index is zero (fats and proteins don’t lead to a significant release of glucose into the bloodstream).  For carbohydrates, the glycemic index tells how fast the food’s glucose will be released.  High-numbered foods release faster than low-numbered foods.

Many people consider not just the raw index, but also the amount of the food eaten.  Obviously a whole pineapple will release more glucose than a modest-size bowl.  The load is easily calculated by multiplying the GI by the number of carbs in the food to be eaten, then dividing by 100 (to make the number sound smaller).  Even easier, google “glycemic load of ___.”  I like the website http://nutritiondata.self.com.  All sorts of nutritional information is included, including the estimated glycemic load:

glycemicload

So What?

The goal for most women should be a glycemic load of no more than 15 at every meal.  Most men, being larger, can aim for 20.  And, before you ask, no, we don’t get to save up from one meal to pig out at another!  The goal is steady levels of glucose in the bloodstream.

So is a glycemic load of 15/20 (women/men) a target or a limit?  It’s an upper limit, but very low can be bad for two reasons.  First, the brain needs glucose to function.  Second, low blood sugar can make you feel hungry (maybe it’s the brain saying, “Hey! I need some glucose!”), so although it’s important not to ingest too much in the way of a glucose source, it’s also important to get enough.  The glycemic load should probably be at least 8-10 per meal (5ish for a snack).  While it’s important to not eat too much, it’s also important to eat enough.

Application

If I serve cinnamon rolls for breakfast, a 2-roll serving contains 516 calories, 81 g of carb, and has a glycemic load of 57.  This means, basically, that if I eat half of one cinnamon roll it uses up the entire allowed glycemic load – and I still need protein and a nap.  In contrast, a breakfast containing a fried egg with hashed browns and bacon contains 495 calories, 27g of carb, and has a glycemic load of 12.  It’s delicious and filling, and will last me until lunch time.  Basically, we should be getting our carbs from fruits and vegetables, not from grains.

By keeping an eye on the glycemic load of the foods to be eaten (as well as balancing proteins and carbs) I’m discovering that it’s easy to get enough food and never feel hungry. I’m feeling better, and as a bonus, my extra weight is slowly coming off.  What we eat has a huge impact on how we feel.