What is Rheumatoid Arthritis?

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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.

Reference

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/

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rick

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It is a crippling disease with extreme pain(when the drugs don't work) and an ugly disease that can cause death. That's what RA is! I wish I didn't know it! It fairly well wrecked my life!

Hi Rick!! :)

Thank you for writing this blog. It is well written and informative. I wasn’t aware that there were so many autoimmune diseases. Thanks for the bit of humour...always needed. :) It's good to hear how other people have experienced RA. We are all different and so are our stories. Just like Diabetes.

As you know, I was dxd. with Type 1 D when I was 3 y/o(52+ years ago), then severe RA at age 24(31+ years ago), Raynaud's, Asthma, and OsteoArthritis(8 years ago). Chances are, there is something else brewing.

I had symptoms of RA not long after my first Child was born. My first symptom was severe pain in the groin(lower hip) area. Thank goodness my MIL was standing behind me cuz she caught me as I fell backward, from the pain. Then some finger joints were swollen, stiff and painful and a few other painful joints crept in.

It took a year before I was dxd. but I was thankful that I was sent to a rheumy and he dxd. me very quickly with severe RA. I had no clue what it was since many Specialists aren't big on info unless you know what to ask. I didn't. I found the usual basic info in books, so it didn't sound too bad. No internet back then. I figured it was like the Arthritic pain that the older People get every once in a while. Surprise! I found out it was worse.

We experimented with different drugs until we found the right chemical cocktail for me that worked. I have been on 20(I may have lost count) medications for RA so far. The only ones that worked for me were Indomethacin, Vioxx, Gold injections,Imuran and steroids. I seem to be a Person with whom only the older drugs work. None of the newer medications(Biologics) worked for me. Strange but true. I'm glad that I was able to try them though.

As you know, in 2005, my youngest Brother died. He had Type 1 D and RA also. I was heart broken and I ended up with Shingles the next month. Shortly after that the Imuran stopped working. I went through 6 Biologics, Methotrexate, Indo, and Prednisone the last 9 years. I seriously thought I was dying Spring of 2013. I had lost 19 pounds, had lost most of my muscles, was really tired,just wanted to sleep, could barely walk, had thinning hair, was pale, had lower BP, little appetite, was always stiff and in extreme pain. My Hubby had gotten me a wheel chair. I had missed my RA appointment at that time, so when my Rheumy saw me the next appointment, he was shocked and frustrated. He took me off the Rituxan, Methotrexate and Morphine.

I am back to 126 pounds, got my muscles back through exercise and food, my sed rate is normal and I do feel better usually 4-5 days of the week. I still have bad days when the pain is great(bad)but I'd rather be here than where I was. I don’t need the wheel chair yet. :D The Biologics and/or the Methotrexate went against me and caused all these problems.

I wouldn't wish any disease or hard times on anyone and definitely not severe RA. Hopefully they will find a cure for it before countless more Children(JRA) (like our Friend Trudy from Tud and my Cousin) and adults are attacked.

I'd be Happy to help anyone with RA also. Don't be shy! :) Thanks again Rick. I'm thrilled that the Rituxan is still working for you. :)

*I submitted this post 3 or 4 times but it didn't show up. If they eventually do, not to worry, I'll delete them.

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Terrie, I have always looked up to you as my mentor on this disease. Though we had different paths we seem to tread the same water, except the biologics have worked for me. You are very brave to share your story and I deeply appreciate your kind words.

Yes like diabetes the disease does act in very different ways, progresses faster or slower. One thing I did not mention is that roughly 70% of the diagnosed cases in the US are in females. It is an odd statistic and it is not known if the reason is that men simply push it further without treatment or if their cases are milder, thus not seeking attention. This is especially odd since juvenile RA breaks down at closer to a 60% - 40% female to male diagnosis.

One would think if the population of overall RA cases is more evenly divided in the juvenile RA population the total population would more mimic the Juvenile RA population. So it is not known if it is quirk of statistics or as men age, we tend to age out of the most active onset phase.

I was 45 as I recall when DX'd however I had certainly had the disease for a few years I was not aware of what was happening. For me the Trans Am moment as I call it was a watershed event. As much as I so wanted to ride in my son’s new pride and joy, I just could not do it. I never got to ride in his car and it caused dual hurt, shame on my part and a hurt feeling on his. We have both come to recognize why, but some things are just too important to forget.

In writing the Blog I am hopeful to educate our community a little bit about RA and its tendency to follow us type 1's around. It’s a shadow I wish I had never learned about first hand.

If you feel extremely tired, if you have swollen joints (usually on both sides of the body), if you feel very stiff feel stiff in the morning, if walking is painful or the world seems to moving at a fast pace while you are dragging along, and especially if you have these symptoms and are type 1, ask for the RA factor test and if it is out of range, see a Board Certified Rheumatologist. Yes the disease is tough, but not treating it makes it worse both in the short and long run.

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Thank you for sharing Rick and Terrie. I applaud you and others like you, who fight with bravery,two auto immune diseases or more at the same time.

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my only addition is to get a board certified rhummy. You want someone who understands the ins and outs of the various drug therapies. There is no room for amateurs in this world of very high stakes drug therapy. A mistake can be deadly. Heck my guy who i like a lot knew what the drug induced Lupus was all about. He knew to go after it in a dual way with steroids like no tomorrow and heavy duty antibiotics like the ER doc wanted to do.

Had it been up to the ER doc or PCP both good doctors I might not have made it. I am fortunate he was willing to follow his judgement and trust he knew what to do. No one was able to do both they simply were not trained well enough in the biologic drug therapies.

When you are in a tough position with these biologics you want the best expertise you can buy. These are big big drugs and when they work they are great. But when they go bad, they can go bad quick.

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Thanks for the information guys. I only hope I don't add this to my little stable of illnesses.

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Thanks Rick, Terrie, Eucritta for this valuable information and personal stories. Terrie mentioned my Juvenile RA. I got it at the age of 12, which was the Dark Ages for treatment. I had many severe episodes of it, spending many months in my teens confined to bed in great pain, and I don't recall taking even an aspirin. Over the following years, the episodes became less severe, and I went into remission sometime in my 30's. While all my joints are somewhat damaged, I still walk (one complete knee replacement), type on my computer, live life--and deal with my other four autoimmune conditions!

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Eucritta, I swear by my pharmacy for many reasons, but yes one of those great reasons is RA. I know if I run out of a script or need a long used drug that has expired over the weekend, I can get 2-10 days and I get it with a smile a knowing nod. Mail order just does not act int hat manner. By the way I use a CVS and those folks are a like family to me, so corporate can also be local.

Trudy, I am so thankful my RA came on in middle age instead of in my childhood. I know it is wonderful how joints can be repaired these days. I have a nice new hip and yes my right foot still sticks out like to the side and it riding my bike requires pedal extensions.

I have also been told on autoimmune disease increases the risks of having more. I have three so Trudy I am trying to catch up with you. I tease that I want 5 autoimmune diseases before I leave this world. My doctors roll their eyes and say that they will keep that from happening.

Thanks all for the wonderful comments. I am so glad we have this kind of expertise on TUD.

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Thanks for this enlightening discussion everybody! My osteoarthritis is getting worse rather rapidly. You know, docs are looking at the possibility that my fibromyalgia is also autoimmune related. It is a complex set of overlapping diseases and syndromes and I am glad we can discuss them all here!...Judith in Portland.....Blessings...

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I have read a few articles in arthritis today that fibromyalgia is now considered an autoimmune syndrome (Syndrome because it is a group of interrelated issues without a specific known cause). But some researchers are starting to focus on the autoimmune system as the potential root of the issue. I do know some research is being done about using some of the broader spectrum RA Biologic drugs. Some research using methotrexate and Xeljanz are having some promising impacts, but they along with Remiciade are harsh drugs and not always well tolerated. It is interesting that fibromyalgia is mostly (but not always)confined to females, much like RA was often thought to be a primarily female disease until the 70's when more men began presenting with RA issues. As I said in my article above it is not fully understood why this occurs and if the percentages are actually representative of the disease or suggestive of treatment being sought. It might be that women simply seek treatment and men do not. Again it is not completely known, but like RA, there may be a gene set, more common in women that this disease targets.

I for one am happy to say that I have RA in one regard. That is that I am male with a disease profile that is mostly female. When people suggest I get in touch with my feminine side, I point out; I am in touch every 4 months when I have the two days of IV's. :)