[NOTE: updated on Feb 21, 2013 — added a couple new injection suggestions near bottom of post]. I’m posting fast-and-furious because my life is in super-fast motion right now, and I need to get y’all caught up to “today” rather than telling historical stories. Reading a blow-by-blow account of someone’s life, rather than a historical account of past events, allows the reader to be “in the moment” with the author, experiencing all the twists and turns, and makes for far more interesting reading! My past posts have served to provide some medical history/background, but very soon (maybe after this post?) we’ll be all caught up and current with today.
Enough disclaimer, now back to the regularly scheduled program …
Multiple sclerosis, briefly, is an autoimmune disease in which the body attacks the myelin sheath that surrounds/protects the neural axons in the “white matter” part of the brain (the “white” actually comes from the myelin, which is a fatty tissue). The way I think of the situation is to consider an electrical wire: the plastic stuff that surrounds it serves as an insulator, and is analogous to the myelin. The wire conductor (the metal part of the wire) inside is like the neural axon. When the myelin in the brain is compromised or made to disappear altogether, the axons are exposed, and the electrical signals that travel in them can get jumbled and/or not get to where they need to go. Sort of like an electrical short-circuit in the brain. The resulting symptoms due to this short-circuiting include eye problems (like the optic neuritis I experienced many years ago), twitching, numbness, difficulty in walking, balance problems, and cognitive issues (for example, I have a difficult time finding “the right word” when I speak or write).
Immediately after diagnosing me with MS, my neurologist stated that she wanted me to start on a “Disease Modifying Therapy”. There are a couple of different options, but she said my only choice would be Copaxone. Other options can harm body organs like the liver, and she said she didn’t want to have to worry about those issues. No one really knows how Copaxone, a mixture of about 4 amino acids, works. At one time, it was thought that the drug acts like a myelin “decoy”, coaxing the body to attack the drug rather than itself. But I believe this oversimplistic explanation is largely considered incorrect, and a more elegant explanation is that the drug enhances the production of cells in the body that actually suppress the autoantibodies that attack myelin. A quick overview is given here: http://www.mult-sclerosis.org/Copaxone.html.
Copaxone is a daily subcutaneous injection consisting of 20 mg of fluid. In other words, it is administered under the skin, in the fat layer, rather than in the muscle tissue. A nurse was sent out to to my house to train me how to do my injections. We practiced for well over an hour on a little half-sphere with a blobby texture. I learned how to use an autoinjector, as well as to inject manually. Given my unnatural sense of squeamishness towards all things needles and medical procedures, I knew immediately that the autoinjector was going to be my best friend.
Then came the moment of truth: I had to demonstrate that I had been properly trained, by injecting myself, while she and my dear significant other, looked on and critiqued. Per instruction, I heated the injection site area with a warm compress first. It took me a couple of tries before I could bring myself to touch the button on the autoinjector that did the deed. The button makes a distinct “click” when triggered, and that noise was the only way that I knew that the needle had even gone in. I was ecstatic! I felt nothing! And when I counted to 10, per instructions, and withdrew the autoinjector, I could see that the syringe was indeed empty and mission accomplished. I hugged the nurse, I was so happy that I was able to carry out the execution, without nary a pain. But …
… within a couple of minutes, my joy turned into pain. My belly, the first recipient of Copaxone, felt like it was both badly bruised and set on fire. I guess the nurse anticipated this reaction, because she grabbed the bag of frozen peas that I had previously laid out in the prep area and slapped it on my stomach. The cold helped, but that mother hurt for many, many hours. I had a terrible bruise that showed up the following day, that didn’t go away for several days. Despite the “shiner” on my stomach, I proceeded with injecting in a different area, the following night. And oh. my. gosh. Same story: needle didn’t hurt at all, but the after-burn was unbearable. I stopped taking injections for about a week — I felt that I needed to talk with some folks, make sure that what I was experiencing was “normal”, and that I wasn’t in fact having a bad allergic reaction or something to the drug.
I have to say, the company that manufactures Copaxone has a great team of support nurses. In talking to one over the phone, I realized that I should change my injection technique. In case any of you out there are having similiar issues with your injections, I recommend the following (the below steps made the difference between being able to tolerate this drug and just giving up):
1) heat up the injection site, as recommended (this step wasn’t what made the big difference, however)
2) VERY IMPORTANT: when injecting, HOLD THE LOWER PART of the barrel just barely against your skin with one hand, and use the other hand to push the top part downward and to hit the release button. This step is what made the difference — before, I was pushing the autoinjector with force required to close the gap between the lower and upper pieces, but that force was sufficiently strong such that I was pushing the tip of the autoinjector significantly into my fat rolls. Don’t let the tip of the autoinjector “dent” the surface of the skin as you push the upper part of the autoinjector, but rather use one hand to keep the autoinjector’s lower half fixed, just barely touching the skin. Once I learned this trick, I haven’t bruised at all.
3) The above is easy to do, if you are injecting your stomach or other easy-to-reach place, but next-to-impossible if trying to do your hips. Another trick (that the Copaxone nurses will never tell you): take a piece of tape, or a rubber band, and force the 2 halves of the autoinjector to come together, so that you can use just one hand to both place the tip of the injector gently against your skin and also hit the trigger button. Caution: the gap between the 2 halves serves as a safely lock … as long as the halves are apart, the trigger button cannot be pushed down. But as soon as you force the 2 halves together and keep them that way with tape or a rubber band, then the autoinjector is “armed and dangerous”, so don’t hit that button until you are ready!
4) As soon as you withdraw the needle, apply pressure to the injection site. I get a clean washcloth, and press firmly on the site for the amount of time it takes me to count to 60.
5) I immediately then throw a cold bag on the injection site. I’ve found that the bags that come with the Copaxone in its shipping container are perfect for this purpose — put them in the back of the fridge (not in the freezer), and they are then plenty cold enough to do the job without being so frozen that they aren’t pliable.
6) Exercise! That’s right … I have found that the single best thing I can do to get rid of the after burn is to jump on my elliptical and work-out the pain.
[Note: the below blue-font additional suggestions added on Feb 21, 2013 after successfully meeting a entire-month-without-skipping-an-injection milestone]
7) Remove a whole week’s worth of syringes at a time and place them in a dark place, where they can warm up to room temperature before use. Get another week’s supply when you get down to one remaining syringe. Before insertion into the autoinjector, try to bring the pre-filled syringe up to body temperature by placing it under your arm pit (or between your knees if you are sitting, or against some other clean and warm body part) for ~5 minutes or so.
8) I find that I need to keep track of the injections at a level of accuracy that is unachievable by just marking them in the little diagram included in the Copaxone injection diary. I started marking the injection sites with a permanent magic marker directly on my skin (taking care not to let ink get on the injection hole itself, but just mark a dash nearby). But the ink was washing off too quickly, so I hit upon a better idea: the small round band-aids! They don’t wash off, they are small and fairly discrete — perfect! I place one over each injection site, and only remove them when I am on my 3rd return visit to a particular body part. This strategy allows me to keep track of the last 2 injections that occurred in a particular injection site area, which is sufficient to know where to stick the needle and avoid these “sensitive” spots. To be even more discrete, one could use scissors to cut up the sticky tape portion of a bandaid into little squares, and then just place a square near the injection site. They don’t come off until you remove them.
9) Poke the corner of a sterile gauze up into the end of the autoinjector after the autoinjector is loaded with the syringe and the cap has been removed, in order to sop up any drops of medication sitting on the outside of the tip of the needle. I’ve read that the medication can cause discomfort to the skin if it comes in contact with the skin, which is the motivation for insuring any excess fluid is removed from the outside of the needle.
I hope the above helps anyone having some of the same problems I was having. That said, things still aren’t perfect with me — I don’t get the bruises, and the after-injection pain lasts for maybe an hour or two, rather than several hours, but even weeks later, I can tell you where every injection site I have is located — they itch, they swell up on occasion and become warmer than the surrounding tissue, and there is still some pain (a deep aching pain, like an older bruise). I hope that these issues resolve, as time goes on.
Now, all that said, I have a confession: I’ve now skipped 4 nights without an injection, after previously having made such great progress. There were a couple of reasons for bailing out this week, one of them being that I had a particularly stressful week at work, arriving very late home at night, and I just couldn’t muster up the energy to do the shot. As for the other reasons, I’ll save that discussion for the next post. Tonight is Friday, I don’t have a stressful presentation to uppity muckity-mucks tomorrow (as I had earlier this week), so I will be crawling back on the bandwagon tonight with the intent of really sticking with it this time, no excuses.
PS: my heart goes out to all the families involved in the terrible school shooting tragedy today in Connecticut. Such profoundly sad loss of life tends to provide perspective: my own health concerns seem so insignificant by comparison to such tragedy. I am grateful for my health, life, loved ones and friends. We may never know what tomorrow holds, but we do have today. Make the most of it.