Predicting Rheumatoid Arthritis
Two new studies indicate that predicting Rheumatoid Arthritis disease activity might be within the realm of possibility. I think Rheumatoid Arthritis lives secretly within the bodies of many victims for years, like a haunting. Invisible activity in a person’s cells precedes diagnosis and many patients’ onset stories tell of years of suspicious symptoms.
New studies give hope of predicting Rheumatoid Arthritis years ahead of time
1) One new study I mentioned on Twitter last month found various isotypes of anti-CCP in blood samples of patients who eventually were diagnosed with Rheumatoid Arthritis. They found that anti-CCP antibodies are present in the blood from 1.1 to 5.9 years before joint symptoms are confirmed. “Anti-CCP2 antibodies of both the IgG and IgA isotypes pre-dated the onset of RA by several years and also, antibodies of both IgG and IgA isotypes predicted the development of RA, with the highest predictive value for IgG anti-CCP2 antibodies,” Arthritis Research and Therapy.
An older study I found on NIH (2006) had similar findings, with the anti-CCP preceding diagnosis for an average of 4.5 years. They concluded that predicting or preventing autoimmunity is a prospect “one cannot ignore.”
2) “Early changes in bone mineral density measured by digital X-ray radiogrammetry predict up to 20 years radiological outcome in rheumatoid arthritis,” Arthritis Research and Therapy. Researchers found change in bone mineral density of the hand predicted future joint damage by Rheumatoid Arthritis.
So what if Rheumatoid Arthritis can be predicted organically?
Someday we’ll be able to predict Rheumatoid Arthritis so that harsh symptoms and dangerous manifestations of RA can be prevented. But what does that mean to us now?
- It means it should not take years to diagnose RA or months be referred to a rheumatologist. If every GP knew about the anti-CCP test and was willing to use it, how much of a difference would that make?
- It means that the injuries and traumas that seemed to push some of our immune systems over the edge into full-blown disease may be less significant as culprits than we think. The disease may very well have been simmering for years until an inevitable moment.
- It means that the rare sliver of cheesecake I had at the end of the evening on my birthday was not the cause of the horrible pain in every single joint that I had all day that day. And it probably had nothing to do with the pain of every day for the last five years either.
- So much for so many myths on our parents’ wanting of us, hypochondriasis, or laziness as the basis for RA.
Recommended reading:
- 20 Essential Facts About My Own Rheumatoid Arthritis No Doctor Ever Asked Me
- More on tests for RA
- More on RA diagnosis
- Mistaken beliefs about a Rheumatoid Arthritis blog?
Interesting stuff, thanks Kelly
I’ve had really noisy joints for the last 10 years, with the exception of one knee, which is like my “golden knee” and definilty some indicators that I’ve ignored the last 2 years, now that I look back.
For my actual diagnosis, I went to a low/no cost clinic due to no insurance, and even they gave me a anti/ccp test, my initial RF test by another was done a year earlier when I had just a couple small symptoms, came back negative and they couldn’t explain the sausage finger, and just told me I jammed it or something. Coulda got a years jump on this! grrr.
Thanks for sharing that mj!
A percentage of patients won’t show that anti-CCP antibodies but most do. And writing some of the other posts on blood tests I learned that there is more than one kind of antibody to test and some are better or more expensive… so when a lab says “negative” it may not be the last word. Really a mess if one is depending on that, so blood tests aren’t the end all for RA diagnosis yet. Science just isn’t there yet… But like you said, many patients could “get a jump” on treatment if GP’s and clinics knew what test to run.
I mentioned pain to my GP for a couple of years before he finally tested my ANA levels last year. 6 years ago they were borderline at 1:80, and the only reason the test was run was because I was having recurrent miscarriages. When my GP ran it again, they were 1:320 with a homogenous pattern, so he suspected Lupus. (I also had a +RF, but it was 28, so not super high.)
Turns out my anti-CCP was “greater than 250,” so above what the lab would even quantify, and that gave me the RA diagnosis. If my ANA was creeping up years ago, it makes me wonder what the anti-CCP test would have been since it is so high now. I could have started treatments 6 years ago. Instead, it has been 8 months since my diagnosis, I only spent 3 months on meds before I lost insurance (finally have new – expensive – insurance so I can go back on) and I am already developing nodules on my knuckles and having my fingers turn and bow outwards. Not to mention my burning, screaming hip joints, and the more minor issues I have in the others.
Hi Megan,
Good to hear you can go back on treatment & I hope it helps your hips feel better!
I’ve always similar test results. Meds seem to make the Rf go down but not the ccp. Must have something to do w/ the way current treatments work.
We may be closer to being able to predict RA, and thus begin earlier and effective treatment which would result in less joint and systemic damage, and possibly even remission – but only for those who have adequate health insurance.
Poorly managed RA, can lead to disability, which is costly to not only individuals and their families, but also to health care systems and our economy. As a country, we must decide if we want a health care system that provides all Americans affordable access to health care or one that leaves millions without access to the medical care they need.
The only problem with this is that the rheumy would actually have to take you seriously and believe you before ordering the tests. My shoulder is probably my fault, my knees have been bad for most of my life because my knee caps aren’t sitting right, so I can’t count those. However, my elbow frequently acts up in a way that I have a very hard time using it, and occasionally my hands and wrists will act up. My hands were taking turns for a week; the affected couldn’t stay holding the steering wheel, but my GP was very quick to tell me that at 35 I’m “just getting old”. He claims that RA doesn’t affect elbows. He stopped me before I could get to my hands. I don’t think he’d have run the test without additional education on what RA is. He assumed that I only studied up on JA and knew nothing about adult RA.
Oh, Danielle,
A rheumatologist told you that RA can’t affect elbows? Is he board certified? I hear this stuff a lot & I believe what you tell me since I’ve met some of these type docs who scoff & make those comments like “you’re just getting old.” A general practioner can run the anti-CCP test – you don’t need a rheum doc to do it.
Trying to think of what to say to you. Anecdotal evidence is not worth much to some who are reading, but I’ll tell you I have RA in every joint & my doc confirms it, not denies it. If anyone is inteterested, we’ve done some surveys here about which joints can be affected there are some incredible lists in the 263 comments here and 19 more here about what docs say about that. There are more across the blog & all over FB for almost 2 years not to mention the 70 plus RA Onset Stories and all emails that I get – SOOOO that’s why I’m confident that my experience is confirmed. RA can affect the whole body. Wish it couldn’t!
Ok I re-read your comment – its the GP who’s so confused. If I were you, I’d request the tests.
I knew he was misinformed when he said that. I have a problem with not knowing what to say in person, and I’m “that type” that backs down easily with confrontation. I can’t argue to save my life :p I didn’t know what to say to him at that time. I think that he thought I am just paranoid because of my daughter. The arrogance just shocked me.
I am exactly the same way & I know that arrogance firsthand. That’s why I really feel for you. Last time I went in to see the doc I had talked to a friend w/ RA & she said, “Kelly take us with you. Imagine I’m there & you’re just telling me.” It did help me. This is the reason I’m working on the e-patient topic too – we all can do better to take care of ourselves. It’s so much different than taking care of our kids. I know you are a great mom. You deserve the same care Emily does. Please look at my story on the ePatients.net site when you get a chance.
Danielle,
Sorry to hear your GP was so misinformed – RA does affect the elbows –it has mine.
Not all docs are equal, there are good and bad, as in everything. My first symptom was a numb, stiff finger when I woke in the morning. I wouldn’t have gone to the doc, but my big, bossy sister made me see her GP. He didn’t dismiss this minor symptom, but ordered blood work and I tested positive for RA factor – and was shocked – I was only in my 20s at the time – this was 34 years ago.
The GP that diagnosed me, was an older and well-regarded doctor. I was fortunate that he had the knowledge and experience to know what to test for.
As Kelly has suggested, ask your GP to order this test – and get a copy of the results – it’s good to keep your own medical file.
Definitely get a second opinion and have the anti-CCP test ordered. My elbows are most definitely affected. If I sleep with my arm under my head, I can’t straighten it in the morning. Carrying my nearly-30lbs 1.5 year old does it too. Never had this problem with my first daughter.
I am one of those whose test negative for Anti-CCP. Although I can say that it was one of the first tests that my Rheum Doc ordered. He said if positive it meant a more aggressive course of RA. Although I have heard of many with RA who are Anti-CCP negative who have had ended up joint damage. However, I was relieved that my Rheum Doc tested for Anti-CCP….It showed to me that he did not skimp on the lab tests…Anti-CCP testing is a VITAL part of the diagnostic process. I was going to demand that it be done had he not tested for it.
This discussion is very interesting. When I was first dxd with RA we had a giant scare – the first test came back saying Lupus. However the next two tests indicated RA. These were all performed by my GP. I went to a superb RA Doctor- he had done much research on biologics, prior to settling on being a doc. He said I needed Enbrel asap. My Insurance fought him for months. He finally got the UW to administer my Enbrel to me weekly- then the insurance had to pay. Eventually the Insurance won and I could no longer see this doctor. I then went through 4 other doctors. All who agreed to my original dx of RA, Fibro, Reynauds and most recently Psoriatic. They all agreed Enbrel would be best but ended up with Orencia this past two years- because of insurance (Have Medicare now)I have had 1 Xray since dx in 2005- but I continue to give them 8 vials of blood every month. I called the docs office yesterday after reading this article- and asked them to send me the last 3 months of blood work and chart notes. I want to see what the doc is saying about my RA and what the blood tests reveal.
That said… It amazes me how many people are told you can’t get RA here or there- that discount a childhood or adult injury- I believe that RA is in your joints- and this pain radiates to the ligaments, tendons and muscles. I am very lucky my new doctor’s nurse is about 28 and she has RA and Fibro- She knows just looking at me what kind of a day I am having. If she has to quit because of this disease-I’m probably going to get another doctor. lol. Seriously- It is statistical fact that there are not enough qualified RA doctors to go around. Everytime I am at a University for tests I encourage the interns to consider RA-
I pray that we will see greater advancements towards a cure or even treatment. I have met so many people who are not getting good care that have this disease- and mostly I believe it is the Insurance companies who are dropping the ball- not the doctors. The doctors however need to go to some refresher courses.
Brenda,
Biologics are very expensive drugs – coverage will vary among private health insurance, and in some cases aren’t covered at all. The drug makers of biologics, however, do have assistance programs that will help even those with private insurance, cover their out of pocket costs or high copays.
These assistance programs may not be available to those on government health insurance like Medicare. Because infusion biologics are covered under Medicare Part B, they can be less expensive than injectable biologics that are covered under the Medicare drug plan, Part D, where the cost of an injectable biologic can cost 50% of the actual cost when in the gap in coverage – the doughnut hole. So, many RAers on Medicare, opt to take infusion biologics rather than injectable biologics simply because of the cost.
I agree we need more research for better treatments and a cure. Recently the House of Representatives passed legislation to cut funding to the National Institute of Health, the nation’s largest medical research center. Research at the NIH has provided the foundation for the development of many breakthrough drugs, including biologics and continues to fund biomedical research to better understand autoimmune diseases. The University of Oklahoma recently received a NIH grant to research juvenile idiopathic arthritis which affects 300,000 children in the U.S.
We need to contact Members of Congress and tell them to oppose cutting NIH funds and support investing in the health of their constituents.
Joie- I guess I am confused. Apologies if you thought I did not know how expensive biologics are- I am very familiar with the costs, I was pointing out the insanity of the insurance companies and Medicare/Medicaid opting to pay for an infusion when Enbrel a shot I could administer myself would be less costly. In my particular situation the only way I could get a biologic was to opt for a procedure administered by a doctor in the hospital. My doctor did not want me to have an infusion because of other medical concerns at the time(Remicade). He felt, based on his research for the Arthritis Foundation that Enbrel would work best for me, be less invasive and not create additional worries regarding infection. When I finally became eligible for Medicaid I then faced another hurdle with the doughnut hole. By that time Orencia was on the market and the doctors felt that since I could not afford to pay for Enbrel during the gap (4 months worth) that it was the best choice. I also had during this time an allergic reaction- they were not sure which drug it was and I was the first person ever tested for an allergic reaction to Enbrel. Turns out I do not tolerate sulpha based drugs.
I am a strong advocate for research. The laboratory I worked for when I first became ill, through grants – are searching for cures and treatments in RA, Diabetes and Heart Disease. As you say more research is needed and we all need to continue to call on our Legislators and endorse those foundations that are leading the crusade for more research on Arthritis.
Brenda,
I’m sorry! I didn’t mean to suggest you weren’t aware biologics were so pricey – obviously from your experience you are very aware of the problems the cost of biologics presents to those with inadequate health insurance.
The point I wanted to make was for other readers — that because of the cost, some private insurance plans have lousy coverage for biologics and just because one has Medicare, still doesn’t mean one can afford or choose the most appropriate or best biologic for them.
On other forums I’ve read how many on Medicare, have chosen an infusion biologic because of how it is paid for and how it is less costly to them than an injectible – even though you’d think an infusion biologic would be more costly because besides the cost of the drug, there is the additional cost of administering the infusion biologic. Go figure.
I think this problem with the cost of brand name prescription drugs for Medicare could be fixed if the government was allowed to negotiate for lower prices with drug companies, like the Veterans Administration does – but the Medicare Modernization Act of 2003 that created Medicare Part D – banned the fed gov from doing that. One more thing to write our legislators about – support and pass legislation to allow the fed gov to negotiate for lower brand name drug prices for Medicare.
I totally agree with you about the insanity of insurance – and our health care system – it can be too confusing and complicated – and very inequitable. RA can be better managed these days – but only if one has access to the doctors, tests and MEDS one needs.
There is plenty of good research going on in the pharmaceutical and biotech industry as well. I live it and see it every day. Unfortunately, many companies are laying off scientists in droves as well. You could staff a couple medium sized pharma companies with all the scientists and people that have been laid of in the last 8-9 years.
The NIH is a major source of funding, but there is also research funding through foundations like the Arthritis Foundation. Cuts to NIH funding will slow things down a little, but the search will go on.
I’ve been hoping to post soon on some facts that were given to me at ACR. The REF, under the ACR gives the most money to RA research now, raising over 30 million I believe in their recent campaign. And they give the highest percentage directly to research, several times the percentage given by AF. These are little known facts at this point. Also, I was talking with a patient yesterday who didn’t realize how much capital the pharm industry itself requires for CT / research. I believe that RA / JRA research gov. funding in this country is worse than pitiful, compared with other diseases, but it is a good point that NIH is not the only source by any means. There are other sources not mentioned here.
I am sad to hear of layoffs – I live next to NASA so we have seen thousands every few months the last couple years.
Brenda, excellent that you are getting copies of your blood tests. When I started doing this, I found out things the doctor didn’t notice that needed to be treated. One was iron deficiency anemia.
I have a similar story to all of you above, GP not listening to me, not taking any blood tests etc. It would have been great to get started on treatment earlier. After I pushed to see a rheum doc, my blood tests were very positive. Anti-ccp >250, RF 204, ESR 34, CRP 10. If only the GP would have tested, the answer was right there, so easy.
I think one big problem is the doc’s time crunch. It’s not like the old days when doctors spent a lot of time considering the patients symptoms etc. I don’t feel as though my doctor gets how RA affects me. Next appt I plan to have it all written up and maybe he will grasp it better.
Thanks Kelly for the great post.
My RA labs such as RF, have been negative from first getting sick, in the mid 1980’s. In fact, I was thought to have Crohns disease at first, since i was having GI issues, and fever and joint pain. Its a long story. Anyway, I had joint erosive damage on xray, back in the mid 1990’s. I was started on methotrexate then, and searched for other effective RA meds as well.
Despite all the erosive changes, my antiCCP antibodies were negative, even when the test first came out. Finally then , about 4 years ago, it became very highly positive. . I was well into the RA by then,about 20 years or so. The turn of the anticcp test though, did mark the beginning of the currently 4 year long flare, and the search for the right biologic.
I guess I always did like to do things backwards! That must be the reason that instead of the antiCCP test being positive first, I had fullblown RA and yet didn’t show the positive antibodies until later, much later.
Thanks for adding this information Julie. It helps show the complete picture. Early ccp tests could find a lot more RA patients early, but not all of them & we need more tests to be “discovered” but nothing will replace the testimony of the patient as we always say here. I’m so glad you were at least treated since you found a dr who knew how to identify RA when he sees it, regardless of your genetic tendency regarding certain antibodies, etc. Thanks again for taking time to share. Off topic: hug your little dog for me.
That’s the BIG Trick, finding the RIGHT Doctor! My tests were all positive, but it didn’t matter until I had a doctor that took me seriously and actually did these blood tests! Julie, I’m so glad you had that.
Maybe when I had bilateral epicondylitis(tennis elbow) for 2 years where I couldn’t grip a cup in my hand for the first 3 months, another time, right shoulder pain, could not sleep on my right side for over a year. Maybe this was before I had full blown active RA, it could have been palindromic then. I went to the doctor for the elbows and physical therapy, nobody thought it was anything else. My daughters remember that I would coat my hands with ben-gay and put on gloves so it would soak in. I just thought it was OA from gardening, still could be. All this started about 10 years before my diagnosis. I’m leaving some out, another time, there was the feet too.
I’m wondering if any docs recommend early screening for relatives of RA sufferers? I’m recently diagnosed, high positives for both RF and anti-CCP, and my rheumy said recent research correlates genetic predisposition and high anti-CCP tests (he’s asked for some family medical records although there is nothing that looks like RA in my parents to me). I’ve been wondering if I should suggest my sister think about getting the anti-CCP test, given the above. I think siblings are at a higher risk?
I don’t have a, umm, highly skilled/experienced GP (he’s very new and I’m his first RA patient) but he will order blood tests if I ask him to (sometimes I bring print-outs of medical articles in for him), provide referrals as I request, and, within reason, provide prescriptions for ancillary meds like painkillers, and NSAIDS if I run out between rheumy visits. He always provides me with copies of test results. I’ve decided this is worth his weight in gold. I think it’s worth finding a GP that will trust you and work with you on this.
As personalized medicine and genetics testing advances, that will be more common. I know I’m “watching like a hawk” about whether to have my kids tested.
You are RIGHT on about the GP- that is SO important to find one that will work with you running tests and learning about RA!! Way to go, Cassie.
This is kind of my theory – I was told by the DNA scientists where I worked that Auto Immune diseases may be genetic. This makes some sense.
I know in my husbands family: Mother and Father’s parents moms (hubby’s grandmas) both had RA. My husband’s brother John has Celiac, his brother Pat has RA, his sister Sue had a problem that caused a reversable palsy – my husband has all the symptoms of RA but no factor – he did have a heart attack at age 46 – very high triglycerides (his mother has high triglycerides) and his youngest sister has not shown any thing in the auto-immune yet.
My family: my mother had Rhuematic Fever as a child. My dad’s mother had RA and Chrohns- My dad had RA, his sister had Chrohns his other brother nothing. I have RA- my brother nothing. My son has Hodgkins-
All ailments are classified as Auto immune. The scientists found that if one sibling had an auto immune disease the other siblings would eventually be diagnosed with one. This discussion has me wondering what Gene or factor is common in all auto-immune diseases? And if we shouldn’t test our children, grandchildren periodically to see if they have elevated levels or a specific gene. Just a thought….
Autoimmune disease runs heavily on my father’s side of the family as well. His mom (my grandmother) had/has JRA/RA, which came on after rheumatic fever when she was in her early teens, and she also has Hashimoto’s. His dad (my grandfather) had Chron’s. They had 6 kids together. Two of their three daughters have confirmed AI issues (one has Hashimoto’s, one has Grave’s) and the third has fibro, thyroid problems and we think possibly RA as well. There are 14 of us in the next generation; out of us, one of my cousins has Chron’s, I have RA, and another suspects that she has something going on as well.
My rheum actually believes mine was dormant for a while before I started experiencing symptoms, at least once they found it. Took two years to get diagnosed, including being told it was “all in my head”. At the time of, and for at least 3 years before the symptoms, I was under a huge amount of stress. The doctor thinks this stress is what triggered the symptoms to start. At least NOW he thinks that…