What is Rheumatoid Arthritis?
I have been involved in questions and have given some answers lately about what is Rheumatoid Arthritis (RA)? This board of course is dedicated to Diabetes and we do not often reserve space or engage in the discussion of associated auto immune diseases and that is fair. We are after all a diabetes site, not a support site for other autoimmune diseases. I looked at the current list of autoimmune diseases. This is a nice description I found
“Some of the most common autoimmune diseases include rheumatoid arthritis, type 1 diabetes, lupus, Hashimoto’s thyroid disease, multiple sclerosis (MS), inflammatory bowel disease (IBD, which includes Crohn’s disease and ulcerative colitis), celiac disease, and asthma. The National Institutes of Health (NIH) currently labels more than 90 diseases as autoimmune disorders, and that number is certain to rise as scientists continue to identify and further understand the origin of other diseases” ("Autoimmune Disorders: When Your Body Turns On You," 2014).
RA is often confused with its cousin Osteoarthritis (OA). Like type 1 and type 2 diabetes they share many of the same outcomes, but they have different disease causing agents. RA is an autoimmune disease. It happens when ones autoimmune system malfunctions. OA is a disease of or deterioration of the joints. Sometimes from wear, other times injury. OA is very painful, but RA drugs do not work on cases of OA. In both cases we see Rheumatologists and like type 1 and type 2 we sort of coexist in the same space. Unlike type 1 and type 2, our drug paths do not cross except when it comes to pain medicine. We both use the same types of pain meds.
This blog is about RA. I have had it for a few over 15 years and while I always thought Diabetes was bad, (it is) my greater issue is RA. In the last few weeks several people have asked how I was diagnosed, and when, who did it and why. I hope I can answer some of the questions here.
In a way I was self-diagnosed. No I do not know at the time what I was, but I knew something was horribly wrong. The first thing that happened was that my son purchased a magnificent brand new Trans Am. It was beautiful and wow what a car. When he brought it to our house he asked his mom and I to go with him in this car for a ride he was so proud of. I passed. It was a letdown for him and it honestly hurt me as well. I didn’t go because the car was so low, I was afraid I could not get in out of the car. That was how much pain I was in at the time.
Second I took my other son to visit my alma mater as he was searching for a place to attend college (yes he made the right choice). Parents and were invited on a walking tour. I simply could not go. I sent my son alone. It broke my heart and I finally resolved that this was more than enough, something had to be done. So when I saw my endocrinologist I told him of my issues and he said blood work was in order. He took the blood work and immediately referred me to a Rheumatologist. When I saw the Rheumatologist I told him I was having difficulty sitting, laying down, and especially walking. His comment was that he was surprised I was walking around period. He said the RA factors were off the charts.
So something was wrong, but exactly what? One would think there is a simple blood test to confirm or deny this diagnosis. There is not. What my endocrinologist ran blood work for is call the RA factor. It is an indicator of disease, but alone does not say disease is present. Currently my RA factor remains pretty high, but because of treatment I am moving pretty well. The opposite can also be true; a person with a low RA factor can still have RA symptoms and issues.
When a rheumatologist says you have RA they are relying as much on art as science. The science of course is the blood work, but the bigger issue is observation of the patients. When I go to the doctor he does look at blood work, but he also examines my joints, and watches how I walk, sit and what I say about symptoms. Using all those factors the Rheumatologist makes a clinical judgment about the status of the patient. There is no definitive blood test.
Treatment then is a set of drugs that impact the immune system. The idea is to suppress the immune system in order to stop joint damage. So that brings me to what RA is. What happens is the autoimmune system turns on the joints of the body. Like islets in a type 1 diabetic, for some reason the auto immune system generates antibodies that attack the joints as if they are foreign parts of the body. I have to love the dedication of the immune system to do the job it thinks it has. Even if that mission is misguided and hurtful.
So the drugs that are used are designed to suppress the immune system’s ability to produce these antibodies. At first the drugs were rather broad based. That is the drugs suppressed a large part of the immune system. These broad based drugs were designed to certainly catch the part of the immune system that is responsible for RA. But it also suppressed the other parts of the immune system. One of these drugs is still used today Methotrexate. I currently use a weekly injectable Methotrexate to generally suppress the immune system activity; it also comes in pill form. However these drugs are only partially effective.
Over time more targeted drugs (called biologics) were introduced and they were less broad based and are designed to suppress only that part of the immune system that causes joint damage. These are often TNF inhibitors and frankly they are wonderful drugs. These drugs are often advertised on TV, under various names, but they all pretty much work the same.
Generally it is believed the first TNF inhibitor a RA patient uses is the most effective. That was certainly my case. I used a drug called Remicaide for many years. It was given in an IV and at first I went every 4 months then six weeks, then 4 weeks and finally the drug just become ineffective. I often say when it quit, it quit big time. Well in some ways that is a misnomer, we pressed it further and further until it simply was ineffective.
At that point I ran through a number of various other TNF inhibitors. Each one in succession was less effective for less time. As I recall I used about 5 of those drugs over a three year period. Finally, I developed a reaction to TNF inhibitors which while not common is one of the outcomes of repeated use the drugs. I had a Lupus like condition that hospitalized me for about a week. Incidentally Lupus is a separate auto immune disease and like RA and type 1 it occurs when the autoimmune system attacks the body. We have a small, but likely growing population of diabetics with Lupus in our community. If RA is bad, Lupus is much worse.
That left one drug choice for me at present. I take a drug called Rituxan and like drugs of old it is less targeted and does not focus on the TNF cells in the autoimmune system. Think of it as going back to more of a shotgun approach. For reference I have two IV infusions of this drug every 4 months, the maximum allowed by the manufacture and they do work well. Incidentally this is not a cheap disease, each infusion costs approximately $30,000 of which Medicare pays 80% and my secondary insurance thankfully picks up the remainder. Without the combinations of those two plans, there is no way I could afford $12,000 every four months for this treatment. That is the cost of the drug a little over $30,000 times two for each application minus the 80% covered by Medicare.
These are considered optional treatments; those who do not have insurance do not receive them. So while we know diabetes is a tough disease for some folks to afford, RA would be impossible to get the best care without adequate insurance.
So the upside is that things are working and working well. But like most of RA patients I am living on borrowed time. For me in particular since I can no longer use TNF inhibitors I have exhausted my options. At present there are no more drugs to use and if Rituxan fails I will be out of luck unless another drug is introduced that is not a TNF inhibitor. Right now it appears that drug companies are mostly working on TNF inhibitors so as I ride Rituxan, I have to hope something else comes along, because like with all RA biologic drugs, it will fail. No one knows when it will fail, but it will fail.
Second Rituxan lowers the body’s immune response to the point where other issues can crop up. Some of you remember that I had a bout of shingles. That occurred because the Rituxan lowered my immune response to the point where shingles could occur, things like this will be an ongoing issue.
So yes there is a small but growing group of RA patients in our community. I consider my friend Terrie the go to person for issues involving RA. She has had it longer and been on more drugs than I have. With some exceptions our paths tend to mirror each other and when I have a question she is who I go to. I suggest if you have questions you can ask me, or Terrie and I am sure there are other experts in the community. Feel free to ask, we are not happy we have the disease but like being type 1 (both of us are) we are happy to help if we can.
Autoimmune Disorders: When Your Body Turns On You. (2014). Experience Life. Retrieved April 3, 2014, from http://experiencelife.com/article/autoimmune-disorders-when-your-body-turns-on-you/