Introduction 11-17-08
As many of you already know, earlier this year, I was diagnosed with Rheumatoid Arthritis. For those that hadn’t heard…surprise! This year has been a long and difficult journey, to put it mildly. To be diagnosed with this disease at such a young age has been tough to swallow. Because of that, it’s been hard to share it with those around me, including family and close friends. I apologize for that. My goal with this blog is to keep everyone who chooses to read it informed on the latest news. I have follow-up appointments with my rheumatologist every 6-8 weeks, so I intend to update it at least that often, if not more.
So many people have heard of RA but don’t know exactly what it is, so I’ll include a little RA primer here. RA is an autoimmune disorder that causes inflammation of the joints. The term autoimmune disorder actually encompasses quite a few diseases, including Lupus, Crohn’s Disease, MS, Addison’s, Grave’s and a host of others. Healthy immune systems are designed to defend the body against infection and disease. The immune system of someone with an autoimmune disorder is programmed differently. Instead of attacking infection and disease, the immune system attacks its own cells. In RA, the immune system attacks the lining of joints, called the synovium, which causes inflammation and swelling. As the disease progresses, it causes damage to the joints and can eventually begin to damage other areas of the body as well, including internal organs. In addition to the damage the disease can do, RA patients also have a higher chance of developing Lymphoma than the general population does. The longer the disease goes uncontrolled, and the higher the severity, the greater the risk of developing Lymphoma. There is no cure for RA. There are treatments, but they all come with a cost. The most common treatments compromise the immune system – in an effort to get it to stop attacking itself, it has to be weakened altogether. Therefore, the risk of infection is extremely high. A common cold becomes cause for concern.
Those are the RA basics, now for my story. In my case, it began with a general feeling of achiness, which I attributed to stress. Unfortunately, I had been complaining to my original primary care physician here in Texas for several years and he blew me off. My mistake was allowing him to brush me off so easily; had I known what that mistake would ultimately cost me, I would’ve stood on my head to get his attention. In late 2006, I found a new doctor and started the process of getting established with her. In the summer of 2007, I started to complain of pain in my hands and feet. That triggered the search for the cause, which eventually led me here. My PCP attempted to manage the symptoms herself, as is common practice, while searching for a cause. My blood tests showed signs of inflammation. At that point, we knew we were looking at something systemic – if it was showing up in blood tests, it wasn’t a localized problem. She referred me to a rheumatologist when she felt that we’d ventured out of her area of expertise. Unfortunately, rheumatologists are difficult to get appointments with. Her first choice was not covered by my insurance at all and her second choice had a three month waiting list. In September 2007, I took the first appointment I could get, which was for late December. In mid-December, my company announced we would be changing insurance carriers, and suddenly her first choice was a possibility. I quickly called and was excited to hear that she had recently left her previous group and had joined another; therefore she didn’t have a waiting list! I made an appointment for January, just as soon as the new insurance kicked in. She sent me off for more tests – blood tests, x-rays, skin biopsies (yes, skin biopsies), and a thyroid ultrasound. Turns out, thyroid disorders and RA have similar symptoms and upon examination, my thyroid was extremely tender to the touch.
Ultimately, it was discovered that I have a mass or nodule on my thyroid. It is solid and large enough to warrant a closer look. A biopsy was done in February – not a procedure I’d like to repeat anytime soon – and it was determined that the mass is benign. It has been re-scanned and while it has not disappeared or even decreased in size, it has also not increased in size and I am considered stable at this point. Of course, it will require regular monitoring, but I was given the all-clear to go a year before it has to be re-checked again. With the biopsy coming back benign and my blood tests showing normal thyroid counts, we were back to RA as the cause of my pain.
The official diagnosis came in March. I was put on steroids at that point, which I promptly had a reaction to. Red rashes are not a good look on me! My medication was changed out to a different form of steroids and I’ve been on them ever since. Taking steroids at high dosages for longer than three months poses its own risks, but it’s a risk we’ve had to take. I was also put on what is called a Disease Modifying Anti-Rheumatic Drug (DMARD). This particular drug can cause vision problems, so it requires special eye tests…of course it does!! At the same time, I was given anti-inflammatory medications to try to bring down some of the inflammation in my joints. Because of the inflammation, on any given day, my joints are bright red, swollen, and hot to the touch. It takes a couple of hours in the morning before I’m able to completely flex everything, because the stiffness creeps in overnight. The week before last was such a miserable week that the stiffness never disappeared. I felt like I had baseball mitts for hands because of the swelling and stiffness.
In June of this year, I was started on something called a Biologic Response Modifier drug. The first of these was an injection given once a week. When it failed, I was switched to another drug in the same class, which is an injection given every other week. That drug is also failing. My next choice is a rather toxic medication that was originally designed as a cancer treatment; in fact, it is widely considered to be the drug that ushered in the age of chemotherapy for cancer treatment. Yes, you read that correctly – chemotherapy. It’s also had great success in treating rheumatoid arthritis though. Because of the toxicity, it will require blood tests every 4 weeks. I have been told, on more than one occasion, that getting pregnant on this medication will result in a 16-headed baby. In fact, if you read the literature, the medication is actually used by some doctors to induce a medical abortion, so the likelihood of even being able to carry a child to term is slim to none, 16 heads or not. It stays in the body even after the treatment is stopped. I’m told you have to be off it for at least 4 months before attempting to get pregnant. However, if it works, once I’m on it, it will be difficult to come back off of it, since it will be the only medication to touch the inflammation. If it doesn’t work, I won’t be capable of caring for a child and the point will be moot.
That’s how severe this disease is. I’m to the point now that I no longer pick up friend’s babies for fear of my hands seizing and the potential for dropping them. I cut my hair short again a couple weeks ago because I can no longer hold a blow dryer long enough to dry long hair. I have difficulty cutting meat and usually resort to having someone do it for me. I drop things easily. I have trouble with bottle caps that are screwed on too tightly. On really bad days, I have trouble undressing after work. To say that the disease causes humiliation is to call Hiroshima a “little bombing” - an understatement, to be sure. It’s frustrating, maddening, frightening, and enlightening at the same time. You learn who your true friends are. You learn your mental strengths. You learn to hide your weaknesses.
As of my last appointment (November 10th), we made the decision to begin the toxic DMARD because it’s believed that my form of RA is too severe to be treated with the regimen I am currently on. The fist full and syringe full of medications I take isn’t enough! My rheumatologist stopped counting at 40 inflamed joints at this last appointment. My body cannot continue to withstand such high levels of inflammation, especially since we don’t know exactly when this began. It’s likely been going on for years, undiagnosed. My toes are already showing signs of deformity, as are several fingers. And there’s that nasty little side effect to worry about – Lymphoma. Additionally, the biologic response modifiers have, according to some literature, increased the likelihood of Lymphoma in some patients. Other literature shows that the increase in Lymphoma is just because of the disease, not due to the medications. Whatever the case, it’s a lingering issue that has to be taken into consideration with every decision – because the longer this goes on, the higher my chances get.
I’m told the first few doses of this new medication are difficult. The side effects are what you would expect from chemo – extreme fatigue, nausea, vomiting, hair loss, etc. Hopefully those will decrease over time, as my body learns to process the medication. I’ve been warned that I may miss some work though, in the first few weeks. Thankfully, it’s a once a week medication, so hopefully the side effects will be contained to the first day or two after taking the meds, not repeated day after day. I took my first dose this past Friday evening and handled it relatively well. I spent most of the weekend in bed, had a horrendous headache, severe dehydration, and the world did seem to be spinning off its axis, but no vomiting, so I’m considering myself to be extremely lucky.
I’ve also been prescribed folic acid to go with this medication, which is supposed to help with the side effects. I’ve already been on 50,000 IUs of Vitamin D a week because my Vitamin D levels were non-existent. Plus daily pain meds, stomach acid reducers because of the steroids, and various other medications. In other words, I’m a walking pharmacy! I do believe I’m single-handedly keeping my local Walgreens in business. The every other week injection alone is $1800 a month. Thank god for insurance!!
So, that’s the saga that has been my RA journey. My next appointment is December 10th (only 4 ½ weeks between appointments this time). I will post another update then, if not before.
So many people have heard of RA but don’t know exactly what it is, so I’ll include a little RA primer here. RA is an autoimmune disorder that causes inflammation of the joints. The term autoimmune disorder actually encompasses quite a few diseases, including Lupus, Crohn’s Disease, MS, Addison’s, Grave’s and a host of others. Healthy immune systems are designed to defend the body against infection and disease. The immune system of someone with an autoimmune disorder is programmed differently. Instead of attacking infection and disease, the immune system attacks its own cells. In RA, the immune system attacks the lining of joints, called the synovium, which causes inflammation and swelling. As the disease progresses, it causes damage to the joints and can eventually begin to damage other areas of the body as well, including internal organs. In addition to the damage the disease can do, RA patients also have a higher chance of developing Lymphoma than the general population does. The longer the disease goes uncontrolled, and the higher the severity, the greater the risk of developing Lymphoma. There is no cure for RA. There are treatments, but they all come with a cost. The most common treatments compromise the immune system – in an effort to get it to stop attacking itself, it has to be weakened altogether. Therefore, the risk of infection is extremely high. A common cold becomes cause for concern.
Those are the RA basics, now for my story. In my case, it began with a general feeling of achiness, which I attributed to stress. Unfortunately, I had been complaining to my original primary care physician here in Texas for several years and he blew me off. My mistake was allowing him to brush me off so easily; had I known what that mistake would ultimately cost me, I would’ve stood on my head to get his attention. In late 2006, I found a new doctor and started the process of getting established with her. In the summer of 2007, I started to complain of pain in my hands and feet. That triggered the search for the cause, which eventually led me here. My PCP attempted to manage the symptoms herself, as is common practice, while searching for a cause. My blood tests showed signs of inflammation. At that point, we knew we were looking at something systemic – if it was showing up in blood tests, it wasn’t a localized problem. She referred me to a rheumatologist when she felt that we’d ventured out of her area of expertise. Unfortunately, rheumatologists are difficult to get appointments with. Her first choice was not covered by my insurance at all and her second choice had a three month waiting list. In September 2007, I took the first appointment I could get, which was for late December. In mid-December, my company announced we would be changing insurance carriers, and suddenly her first choice was a possibility. I quickly called and was excited to hear that she had recently left her previous group and had joined another; therefore she didn’t have a waiting list! I made an appointment for January, just as soon as the new insurance kicked in. She sent me off for more tests – blood tests, x-rays, skin biopsies (yes, skin biopsies), and a thyroid ultrasound. Turns out, thyroid disorders and RA have similar symptoms and upon examination, my thyroid was extremely tender to the touch.
Ultimately, it was discovered that I have a mass or nodule on my thyroid. It is solid and large enough to warrant a closer look. A biopsy was done in February – not a procedure I’d like to repeat anytime soon – and it was determined that the mass is benign. It has been re-scanned and while it has not disappeared or even decreased in size, it has also not increased in size and I am considered stable at this point. Of course, it will require regular monitoring, but I was given the all-clear to go a year before it has to be re-checked again. With the biopsy coming back benign and my blood tests showing normal thyroid counts, we were back to RA as the cause of my pain.
The official diagnosis came in March. I was put on steroids at that point, which I promptly had a reaction to. Red rashes are not a good look on me! My medication was changed out to a different form of steroids and I’ve been on them ever since. Taking steroids at high dosages for longer than three months poses its own risks, but it’s a risk we’ve had to take. I was also put on what is called a Disease Modifying Anti-Rheumatic Drug (DMARD). This particular drug can cause vision problems, so it requires special eye tests…of course it does!! At the same time, I was given anti-inflammatory medications to try to bring down some of the inflammation in my joints. Because of the inflammation, on any given day, my joints are bright red, swollen, and hot to the touch. It takes a couple of hours in the morning before I’m able to completely flex everything, because the stiffness creeps in overnight. The week before last was such a miserable week that the stiffness never disappeared. I felt like I had baseball mitts for hands because of the swelling and stiffness.
In June of this year, I was started on something called a Biologic Response Modifier drug. The first of these was an injection given once a week. When it failed, I was switched to another drug in the same class, which is an injection given every other week. That drug is also failing. My next choice is a rather toxic medication that was originally designed as a cancer treatment; in fact, it is widely considered to be the drug that ushered in the age of chemotherapy for cancer treatment. Yes, you read that correctly – chemotherapy. It’s also had great success in treating rheumatoid arthritis though. Because of the toxicity, it will require blood tests every 4 weeks. I have been told, on more than one occasion, that getting pregnant on this medication will result in a 16-headed baby. In fact, if you read the literature, the medication is actually used by some doctors to induce a medical abortion, so the likelihood of even being able to carry a child to term is slim to none, 16 heads or not. It stays in the body even after the treatment is stopped. I’m told you have to be off it for at least 4 months before attempting to get pregnant. However, if it works, once I’m on it, it will be difficult to come back off of it, since it will be the only medication to touch the inflammation. If it doesn’t work, I won’t be capable of caring for a child and the point will be moot.
That’s how severe this disease is. I’m to the point now that I no longer pick up friend’s babies for fear of my hands seizing and the potential for dropping them. I cut my hair short again a couple weeks ago because I can no longer hold a blow dryer long enough to dry long hair. I have difficulty cutting meat and usually resort to having someone do it for me. I drop things easily. I have trouble with bottle caps that are screwed on too tightly. On really bad days, I have trouble undressing after work. To say that the disease causes humiliation is to call Hiroshima a “little bombing” - an understatement, to be sure. It’s frustrating, maddening, frightening, and enlightening at the same time. You learn who your true friends are. You learn your mental strengths. You learn to hide your weaknesses.
As of my last appointment (November 10th), we made the decision to begin the toxic DMARD because it’s believed that my form of RA is too severe to be treated with the regimen I am currently on. The fist full and syringe full of medications I take isn’t enough! My rheumatologist stopped counting at 40 inflamed joints at this last appointment. My body cannot continue to withstand such high levels of inflammation, especially since we don’t know exactly when this began. It’s likely been going on for years, undiagnosed. My toes are already showing signs of deformity, as are several fingers. And there’s that nasty little side effect to worry about – Lymphoma. Additionally, the biologic response modifiers have, according to some literature, increased the likelihood of Lymphoma in some patients. Other literature shows that the increase in Lymphoma is just because of the disease, not due to the medications. Whatever the case, it’s a lingering issue that has to be taken into consideration with every decision – because the longer this goes on, the higher my chances get.
I’m told the first few doses of this new medication are difficult. The side effects are what you would expect from chemo – extreme fatigue, nausea, vomiting, hair loss, etc. Hopefully those will decrease over time, as my body learns to process the medication. I’ve been warned that I may miss some work though, in the first few weeks. Thankfully, it’s a once a week medication, so hopefully the side effects will be contained to the first day or two after taking the meds, not repeated day after day. I took my first dose this past Friday evening and handled it relatively well. I spent most of the weekend in bed, had a horrendous headache, severe dehydration, and the world did seem to be spinning off its axis, but no vomiting, so I’m considering myself to be extremely lucky.
I’ve also been prescribed folic acid to go with this medication, which is supposed to help with the side effects. I’ve already been on 50,000 IUs of Vitamin D a week because my Vitamin D levels were non-existent. Plus daily pain meds, stomach acid reducers because of the steroids, and various other medications. In other words, I’m a walking pharmacy! I do believe I’m single-handedly keeping my local Walgreens in business. The every other week injection alone is $1800 a month. Thank god for insurance!!
So, that’s the saga that has been my RA journey. My next appointment is December 10th (only 4 ½ weeks between appointments this time). I will post another update then, if not before.
Labels: arthritis, rheumatoid
posted by Amanda @ 10:45 PM
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