The Immune Fingerprint and Rheumatoid Disease
I’ve made up another term because I haven’t heard of anything suitable: “immune fingerprint.” It occurred to me that while we talk about how the disease Rheumatoid Arthritis (or Rheumatoid Autoimmune Disease) affects us, one key to understanding disease activity may be considering how we affect the disease. If a disease disrupts the immune system, causing the body to attack itself, then the effect it has on the body could be largely based upon the particular immune system in question.
Let’s look at some simple examples. Think about the various ways which different immune systems (in different people) respond to a bee sting.
- One person has a feverish red lump for a week.
- Another person goes into anaphylactic shock.
- A third person is perfectly well with no perceptible symptoms.
Someone was once amazed to discover that each person has a unique fingerprint. Later it was shown that we each also have a unique voiceprint, iris scan (eye fingerprint), and of course DNA sequence. Truly, the closer we’ve looked the more uniqueness, we’ve found.
Turning to our immune systems, consider the differences in the ways each person in a family responds to a simultaneous cold virus (yes, a virus can mutate).
- They have measurably different levels of fever.
- They have varying degrees of congestion.
- The cold lasts a varying period of time.
If our immune systems are unique, it should not surprise us that we do not respond in identical ways to stimuli. This produces the variety we see with response to allergens in the environment or sensitivities to foods, of course. Our “immune fingerprint” is a plausible, albeit simple, explanation for this diversity.
When a disease like Rheumatoid prompts the immune system to accelerate its activity and malfunction by treating tissues in the host body as targets to be destroyed, we would not expect the results to be identical in each person.
- They have differing patterns of swelling, tenderness, stiffness, pain, or weakness, fever, fatigue, redness, or rash.
- They have dissimilar patterns of disease activity: constant versus flaring; a few joints versus all joints.
- They have varying degrees and types of destruction in joints or organs.
The “immune fingerprint” is also one way to understand the differing responses people have to immune-altering treatments. A minority has an excellent response to current treatments, some do not respond at all, while some enjoy remission. It would seem to be ridiculous to imagine that only certain patterns of expression of the “immune fingerprint” are considered valid patterns of immune disease activity, whether it’s “conspicuous swelling” (another new term, two in one day!), CRP, fever, or something else. Of course, the hundreds of comments on just the posts linked below, and tens of thousands of others by our readers demonstrate the effects of the “immune fingerprint” with RA.
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Recommended reading
- Rheumatoid Arthritis Swelling, Take Two
- Courses of Rheumatoid Arthritis
- Rheumatoid Arthritis Swelling: My Confession
- Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
Excellent concept…a powerful way to look at the spectrum of auto-immune diseases.
Brilliant! This perspective makes me and my “non conformist illness” feel validated. Bravo. You just lifted an incredible weight off my mental shoulder.
This is a great point, and something I feel that rheumatologists and their nurses sometimes forget. I’m only 22 years old, and in only four months have been unresponsive to 4 – 8 pills of methotrexate, plaquenil, and .8ccs of subcutaneous injection methotrexate. When I call my rheumatologist’s office, I find that the nurses sometimes respond as if they expect me to react in the same way that they have seen other patients react to the treatments I’ve been working with. I have been in excruciating pain for months because I was being treated in the same ways as other patients, and they had had eventual success. The fact of the matter is, though, that my illness is different than anyone else’s, and I will likely need different treatments. We all respond differently to the RA in the first place, as well as to the medications that we are given.
Thank you for this post, as always!
Excellent post, Kelly! Your insights are right on the money with your ideas about the “immune fingerprint.” I especially liked the part about mutation. I have palindromic RA, so my disease moves around, and I feel like I play wheel o’ disease every day– but that’s MY immune fingerprint.
Love you! Keep up the terrific work!
Researchers make up terms all the time – go for it! I like this one. I think the immune fingerprint is what they are looking for when they talk about looking for markers that will allow them to personalize treatment so that instead of just trying one DMARD after another until we find something that works – or worse, nothing that works – we can immediately focus on the right answer.
love this article and totally agree with you about our own immune fingerprint. Since it would truly explain the way each of us responds to the same treatment, who has a chance of having more complications than others, who flares constantly as oppose to those blessed to find remission. We are each unique and yes even our immune systems we’re unique. Thank you for putting into words what so many of us feel each and everyday.
Kelly, thanks for your post and the new terms! I am sure that in the future (maybe many years), we will develop tests to find exactly what genetic abnormality we carry (the immune fingerprint), and we will know which of the many drugs will work. I think for a specific person, we will be able to know whether it is best to target TNF, B cells, T cells, IL6, any or all. The immune system is so complicated. Some of us respond wonderfully to some drugs, others not at all. I believe there are understandable bases for these difference; we just don’t know them yet.
Way to Go Kelly…..you hit this one right one the head. You have made this so simple for someone without RA to understand. Not only that , you put it in such a way that even the Dr’s should get it..they all won’t but what a simple way to explain it to them. It’s really frustrating when you don’t always fit into the criteria. Yes, we all have our unique symptoms, responses to the disease and it’s treatments. The only thing we all have in common besides the diagnosis is the desire to be free of it’s effects on our bodies and ours lives…well and maybe just be free of the disease itself too. I urge everyone to share this with your family, friends and your Dr too. I am. It just may be the beginning to help others understand RA. It is such a good analogy, so simple and so pure. I am so glad you were able to explain it this way Kelly. It makes it easy for anyone to understand. We just need to promote it.
Kelly You are a genius!
What a nice way to start my day, Nicole! HUG & Smile! 🙂
Loved this post! I have a Rheum doc that is reluctant to diagnosis me with RA and will only say it’s inflammatory arthritis because it’s not acting “typical”. Typical for him is a positive RA factor, extreme pain and joint deformity. I have had an elevated CRP, swelling, pain, and fevers. He says he’s “old school” and that some other Rheum docs might diagnosis me with RA. I’ve decided it doesn’t really matter. I KNOW what I have. I really like the term you’ve coined, “immune fingerprint”. It makes complete sense. As a mom of five children I can attest to the way each child’s immune system deals with a virus as it runs through the house. I can tell you how each child will react based on previous experience. And, they ARE NOT ALL THE SAME!
I love the onset stories here and see myself in many. Thanks for all you do Kelly! Your site and the wealth of information here has been with me through the initial diagnosis and, it’s the first place I go in search of answers!
There is a very important old post here from 2009 called Is there a typical RA? (See the archives at bottom of right sidebar for link.) Or you might want to put the word “typical” in the search box here to see what comes up – it is a very interesting what I’ve learned over the last 3 yrs – and btw, I’m a mom of 5 also. 🙂
Wow this is wonderful explanation & one I will be sharing with my group. What a clear & consise way to describe RAD. Thanks Kelly x
Wow excellent article/description Kelly & one I will be sharing with my group. What a great way to describe how RAD affects each of us so differently.
Ditto…Ditto…Ditto…….you have helped to alleviate some of my self doubts since being dx a year ago. Even though I have a fairly high rheumatoid factor and high inflammation markers, my symptoms do not always fit the RAD textbook info. Thank you again! You are a shining star!
Janet, I think I’ve found about 2 people ever whose do match it. It’s faulty. I don’t know why we have “self doubts” as you say or blame ourselves – I know the feelings. As if we could “do our RA wrong.”
You’re welcome. Thank you for taking time for the kind words.
Kelly, you have taught me more about RA than I ever learned from my mother (who had RA from her twenties and whose “immune fingerprint” was very different from mine) or from nursing school (and I was a practicing RN for about 13 years). I know that when my feelings are hurt by friends and family who don’t understand RA, I can find encouragement from you and your readers…and can move past my “hurt feelings” and get on with what ever the Lord has for me to do this day. Thank you!
I do have a question for you and your readers about handicapped parking spaces. I’ve been in a flare for most of the past year+ and seldom venture out alone. My husband or daughter drops me off at store fronts and then parks, but on those rare occasions that I am alone, all I can do is pray that a parking space near handicapped parking is available. I commented once to the grocery store bagger who helped me load groceries in the car (a feat that seems like climbing Mt. Everest to me these days) that I’ve been too embarrassed to ask my doctor for a handicapped parking permit, and he looked at me like what do you need a handicapped space for?
I’d love to know if others with RA have a handicapped permit and if they struggle with requesting one.
Patricia, That’s all very familiar. 🙂
I do think many of us have them. I remember talking about it when I got mine a couple years ago and the discussion that followed. I’ve heard others mention it on Facebook as well. Please do ask your dr & try to not be embarrassed. I think I said this to mine: “One more question. What do I need to do to get a handicapped badge?” and I was handed a form to take to the dmv. If your dr doesn’t realize you need this, then your dr doesn’t understand your condition very well which is another problem many of us have, but hopefully you do not.
Thanks for responding, Kelly. I once downloaded that DMV form, filled it out, and took it with me to my next RA appointment…just couldn’t bring myself to ask the doctor to sign it. Think I’ll try again. =)
I am fairly new to ra…been diagnosed for a little over a year and already…my ra doc has tried to say I am depressed and might have fibromyalgia since after only two biologics I am not better. I reminded him that research shows that not everyone responds in fact I read only 40 percent improve at all and that only 5% ever get complete remission….I asked if he thought this was true and he agreed. So I said lets keep trying then…we still have more biologics to try and joked “please don’t fire me” even though, I have read that this really happens. I appreciate your thorough research and have learned so much from your site to equip me when I do go to the doctor on what to expect and what not to put up with.
God Bless you Kelly:)
Joanne, I just want to say way to go for advocating for yourself. I don’t know why most of us seem to have gotten the “well maybe youre just depressed or have a chronic pain syndrome” when the actual clinical trials show the odds are not in our favor that the treatments will relieve our symptoms. But we do and you did a great job responding to it – I tend to hope that such encounters will benefit other patients as well since you may make an impact on how he thinks. Maybe he’ll think twice next time he wants to just “give up” and blame fibromyalgia or depression when a person is known to have a disease that is very painful & difficult to treat like RA / RAD.
Not only do we each have an “Immune fingerprint”, but the RA that attacks us also has different “RA fingerprints”. Those who are supposed to know these things tell us there is no known cause for RA. That seems to be the majority consensus. But deep research into RA and RA groups will find that many have RA due to a Leaky Gut. That is what caused mine. I had Giardia for a full year, undiagnosed despite multiple dr. visits, lab tests. Got sick and tired of being told I was suddenly allergic to dairy, or gluten. Only after being diagnosed with RA a year after the Giardia had started trashing my intestines did I run across someone in an RA forum speaking about the possible link between Leaky gut and RA. The light went on. No question in my mind. Also no question that the damage that was done by the Giardia (later confirmed by a colonoscopy) is permanent, and my Leaky Gut is a permanent condition, allowing bacteria to enter my bloodstream, triggering RA. I was very very lucky. The forum was also discussing using antibiotics to treat RA. I bought the book (Henry Scammell, The Road Back Foundation), and during my follow-up visit to the Rheumatologist I asked to be treated with Minocin. Flash forward nearly 6 years,the RA is in remission. I did have some setbacks…due to using generic drugs that were changed in composition and no longer worked. I went downhill rapidly, within 3 months no longer able to turn the ignition in my car without a pair of pliers (we do get very creative with this disease!). Finally switched to the BRAND Minocin, and gradually over several months regained my physical “normalcy” – altho it took nearly TWO YEARS for the index finger on my left hand to fully be able to curl up. So I HAVE been in the horrid pain that RA can bring…went as far as to purchase a walker, and used it around the house. Was looking at the idea of purchasing a motorized wheelchair. But I KNEW that the antibiotics HAD worked for two years, so had faith that somehow they would work again. They did. Brand name only. My treatment works because the cause of my RA is a bacterial one. Perhaps not all are. (However, there is a LOT of evidence via forum chats and blogs that shows various issues such as colitis, colon surgery, ulcers will contribute to RA).I wish EVERY RA patient would be able to use the non toxic, highly efficient drugs that I use and have similar results!! So sad that many COULD but do not know about it, and they will not hear about it from their Rheumatologist. (Mine is still wondering why this works…).
Great post, and great response. I would have to agree – an individual ‘immune fingerprint’ is a simple explanation that everyone can understand – very well written.
Just as important I think is the idea that there may be many causes of RA (bacterial, genetic, environmental, even dietary) which goes a long way to explaining why different treatments work for different people.
Kelly, you are such a blessing to me and those of us just learning to deal with all of this baggage. This is so simply put after all the new terms and meds and the list goes on…..something we all can relate to. We are Not alone and we are not crazy!!!
Blessings for all you do.
D
Thank you so much Diane. That means a lot to me you took time to say that.
I have been attempting to determine the real onset of RD. I strongly believe that I had onset of Lupus in 1998. I was hospitalized for what was thought to be PTSD. While in hospital, my left knee sundenly become swollen. I thought it may have been from walking up a steep hill? I am obtaining those records now. I am willing to bet given a radical weight loss then as well means I have had this for seventeen years. At the least, the issue of multiple trinket fingers and thumbs, establishes tenosynovitis.
My question is this. How many people with RD have had a Tonsolectomy ? The second question is how many did not take to vaccines? I had three while in grade school. I never developed the circular scarr. They said I had a natural immunity? Could these potentially play a role in early indentification of immune issues?