Ever since December 2007 we have had a interloper in our refrigerator. It is a fairly large box, about the size of a cake box, and it has taken up half of a shelf in our fridge for over 4 years. This nicknamed "cake box of pain" is simultaneously despised and loved and it's time in fridge is limited.
This box holds the medicine provided to me as part of in a NIH sponsored drug study called CombiRx. After being diagnosed with multiple sclerosis in 2007, I was lucky enough to qualify for the study. That is, if lucky means that the month before the end of the enrollment period a lesion showed up in an MRI of my brain which, in combination with the lesion in my upper spinal cord, gave me the diagnosis of MS. (For more on MS and my diagnosis, check out this old post.)
It was great timing. At the time I was 2 years into a 3 year postdoc position, meaning I could find myself unemployed in a year and with a diagnoses of a disease that had unpredictable symptoms and progression. Would I even be able to work in a year? The study allowed me to get care with out having to declare my illness to any insurance provider who would give me the dreaded "pre-existing condition" if I had to change insurance companies. Another bonus, the drug was provided for free (and these are not cheap drugs!). Another big plus in a nerdy way was that I was actively participating in science based medicine!
This was a 3 year trial testing the efficacy of combining two of the most drugs common drugs to treat relapsing remitting MS. One is Avonex, an interferon based weekly intramuscular injection, the other Copaxone, a daily subcutaneous injection of amino acids. Half the study subjects were on both active drugs, the other half on one active drug and a placebo. Note, neither of these medications actually cures MS, but instead it reduces the frequency of relapses. Reduce the relapses, slow down the damage to the nervous system, and prolong active and healthy David. Both drugs reduce the relapse rate by 1/3, and all kind of interesting questions will be answered by this study. Are both meeds better than only one? Is one better than the other? Are there genetic markers in common to all participants? Hooray science!
Not sure if you picked up on it, but both medications need to be delivered by injections. With needles. I have always hated shots and had an active dislike/fear of since a little kid. Now I needed to give myself daily injections! The first month of the study was really difficult. My daily routine was to settle in to take my shot and, after two hours of procrastination, holding needles close to my skin, psyching myself up to do it, repeating the process, maybe 2 hours later I would finally have done it.
The daily shot is not so bad, being delivered by an injector that I simply hold to my skin and push a button that plunges the shot into the skin and delivers the drug. I rotate injection sites on a daily basis and go from thighs to upper arms, to stomach, to the side/back of my torso (love handles). While the shot itself is not painful, it gives me a stinging welt that I keep a heating pad on for half an hour to alleviate the discomfort. These shot locations get pretty disfigured - mottled, discolored, and usually bruised and swollen. I really hate this shot although at the beginning, I would have picked this for my therapy. Even though the study has kept me healthy, I would have been really pissed had I been injecting myself with placebo for 4 years.
The other shot, the weekly shot, is given into the muscle of my thigh via a 1.5 inch needle, which, at the beginning, was basically a nightmare made reality! Not only did I need to take a shot, but I actually had to push it into my own leg. To her credit, Ali was really interested in doing it, but considering her no nonsense approach to life, the whole scenario would have involved screaming, hysterics, panicked fleeing, and would have ended up with submitting to the shot only after I had been knocked unconscious with a blow to the head. While only weekly, this shot came with the great side effect of flu like symptoms - chills, aches, fever, generally feeling horrible for 8-12 hours after the shot. So I would take the shot on Thursday night and hope to sleep through most of the worst of it and have a crappy Friday morning. Luckily the body gets used to it and the flu time gets shorter, and after about a year and a half I could sleep through it and not notice any effects. It got bad again when Connor was born and I was awakened during the worst of the effects, which of course would keep me from going back to sleep. Now flu time lasts only 4 hours.
So I am mostly used to the shots now after after 4 years and over 1200 injections, and I am mostly okay with all the other little details of life now that I have to take medication on a daily/weekly basis. The medication needs to be refrigerated at all times, which means I can no longer head out for monthly excursions to explore the Congo. (It was challenging traveling with a month of meds to NZ this year, but completely doable). It looks like I get beaten daily now when I have my shirt off, but since I have found my life partner and don't need to impress anyone with my godlike physique (Budda), I can enjoy my slow descent into middle age and hideousness. But beyond having to explain to Connor at some point that I take shots because I have a crappy disease, all these things are pretty manageable.
The CombiRx study ended in December, a full year longer than I expected. For being a guinea pig for science, I got 4 years of free medicine and excellent medical care, meeting with a neurologist every 3 months, a fleet of nurses and case managers obsessed with my health, and an MRI every year. Most importantly, I have been incredibly healthy, having no relapses and my EDSS score has actually slowly improved since starting (I am now a 1.5). I was unblinded just before Christmas, and found out I was taking both the active medications as I suspected. I have chosen to go with the once a week shot, and approval for my choice of medications is now with my insurance provider. My insurance company (and I) will start paying for my therapy within a month, and I have enough of the daily drug to last me until the end of April when I will happily take my last daily shot.
The end of the trial is also my last hurdle with respect to disclosure. Not sure why, but now that I am no longer part of the study, I don't feel like a have a secret to keep any more. I kept my disease status secret for 4 years, only notifying close friends and family. I have just started telling my coworkers, and I no longer care or worry if anyone knows. As a close friend of mine told me this summer, this was sort of my coming out story, and it is really liberating in a strange way. Farewell, cake box of pain!
This box holds the medicine provided to me as part of in a NIH sponsored drug study called CombiRx. After being diagnosed with multiple sclerosis in 2007, I was lucky enough to qualify for the study. That is, if lucky means that the month before the end of the enrollment period a lesion showed up in an MRI of my brain which, in combination with the lesion in my upper spinal cord, gave me the diagnosis of MS. (For more on MS and my diagnosis, check out this old post.)
It was great timing. At the time I was 2 years into a 3 year postdoc position, meaning I could find myself unemployed in a year and with a diagnoses of a disease that had unpredictable symptoms and progression. Would I even be able to work in a year? The study allowed me to get care with out having to declare my illness to any insurance provider who would give me the dreaded "pre-existing condition" if I had to change insurance companies. Another bonus, the drug was provided for free (and these are not cheap drugs!). Another big plus in a nerdy way was that I was actively participating in science based medicine!
This was a 3 year trial testing the efficacy of combining two of the most drugs common drugs to treat relapsing remitting MS. One is Avonex, an interferon based weekly intramuscular injection, the other Copaxone, a daily subcutaneous injection of amino acids. Half the study subjects were on both active drugs, the other half on one active drug and a placebo. Note, neither of these medications actually cures MS, but instead it reduces the frequency of relapses. Reduce the relapses, slow down the damage to the nervous system, and prolong active and healthy David. Both drugs reduce the relapse rate by 1/3, and all kind of interesting questions will be answered by this study. Are both meeds better than only one? Is one better than the other? Are there genetic markers in common to all participants? Hooray science!
Not sure if you picked up on it, but both medications need to be delivered by injections. With needles. I have always hated shots and had an active dislike/fear of since a little kid. Now I needed to give myself daily injections! The first month of the study was really difficult. My daily routine was to settle in to take my shot and, after two hours of procrastination, holding needles close to my skin, psyching myself up to do it, repeating the process, maybe 2 hours later I would finally have done it.
The daily shot is not so bad, being delivered by an injector that I simply hold to my skin and push a button that plunges the shot into the skin and delivers the drug. I rotate injection sites on a daily basis and go from thighs to upper arms, to stomach, to the side/back of my torso (love handles). While the shot itself is not painful, it gives me a stinging welt that I keep a heating pad on for half an hour to alleviate the discomfort. These shot locations get pretty disfigured - mottled, discolored, and usually bruised and swollen. I really hate this shot although at the beginning, I would have picked this for my therapy. Even though the study has kept me healthy, I would have been really pissed had I been injecting myself with placebo for 4 years.
The other shot, the weekly shot, is given into the muscle of my thigh via a 1.5 inch needle, which, at the beginning, was basically a nightmare made reality! Not only did I need to take a shot, but I actually had to push it into my own leg. To her credit, Ali was really interested in doing it, but considering her no nonsense approach to life, the whole scenario would have involved screaming, hysterics, panicked fleeing, and would have ended up with submitting to the shot only after I had been knocked unconscious with a blow to the head. While only weekly, this shot came with the great side effect of flu like symptoms - chills, aches, fever, generally feeling horrible for 8-12 hours after the shot. So I would take the shot on Thursday night and hope to sleep through most of the worst of it and have a crappy Friday morning. Luckily the body gets used to it and the flu time gets shorter, and after about a year and a half I could sleep through it and not notice any effects. It got bad again when Connor was born and I was awakened during the worst of the effects, which of course would keep me from going back to sleep. Now flu time lasts only 4 hours.
So I am mostly used to the shots now after after 4 years and over 1200 injections, and I am mostly okay with all the other little details of life now that I have to take medication on a daily/weekly basis. The medication needs to be refrigerated at all times, which means I can no longer head out for monthly excursions to explore the Congo. (It was challenging traveling with a month of meds to NZ this year, but completely doable). It looks like I get beaten daily now when I have my shirt off, but since I have found my life partner and don't need to impress anyone with my godlike physique (Budda), I can enjoy my slow descent into middle age and hideousness. But beyond having to explain to Connor at some point that I take shots because I have a crappy disease, all these things are pretty manageable.
The CombiRx study ended in December, a full year longer than I expected. For being a guinea pig for science, I got 4 years of free medicine and excellent medical care, meeting with a neurologist every 3 months, a fleet of nurses and case managers obsessed with my health, and an MRI every year. Most importantly, I have been incredibly healthy, having no relapses and my EDSS score has actually slowly improved since starting (I am now a 1.5). I was unblinded just before Christmas, and found out I was taking both the active medications as I suspected. I have chosen to go with the once a week shot, and approval for my choice of medications is now with my insurance provider. My insurance company (and I) will start paying for my therapy within a month, and I have enough of the daily drug to last me until the end of April when I will happily take my last daily shot.
The end of the trial is also my last hurdle with respect to disclosure. Not sure why, but now that I am no longer part of the study, I don't feel like a have a secret to keep any more. I kept my disease status secret for 4 years, only notifying close friends and family. I have just started telling my coworkers, and I no longer care or worry if anyone knows. As a close friend of mine told me this summer, this was sort of my coming out story, and it is really liberating in a strange way. Farewell, cake box of pain!
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