Why Rheumatoid Disease Patients Still Fall through the Cracks
“Well, at least it’s nothing serious.” How many rheumatoid patients have heard that, some even from doctors? Last week, after Danita’s story, I wanted to share with you this letter to the editor of Musculoskeletal Network, but health issues and life and a board meeting delayed me.
The letter below is my response to the Musculoskeletal Network article “Cardiovascular Risk in RA Patients: Falling Between the Cracks?” which reported on a new study published in Arthritis Research & Therapy, “Suboptimal cardiovascular risk factor identification and management in patients with rheumatoid arthritis: a cohort analysis.” University of Michigan researchers found that rheumatologists identify and manage cardiovascular risk factors less frequently than primary care doctors do and that even primary care doctors manage CV risk factors less frequently in rheumatoid patients than they do in the general population or in diabetes patients.
As you’ll see below, this has been a known issue for at least a decade.
Musculoskeletal Network reported: “The authors speculate that many rheumatologists overlook cardiovascular issues in their RA patients, assuming (correctly or otherwise) that the PCP is taking care of that. But according to these findings RA patients do not benefit from the same vigilance for CVD risk factors in primary care that is offered for patients who have diabetes.”
Letter to the editor of Musculoskeletal Network, the Journal of Musculoskeletal Medicine
Dear Editor:
Thank you for the February 8, 2013 article “Cardiovascular Risk in RA Patients: Falling Between the Cracks?”1 Falling through the cracks is a good way to describe a serious issue facing people living with rheumatoid disease: lack of attention with regard to cardiovascular disease (CVD) risk and other serious health threats that result from rheumatoid disease.
Studies have shown rheumatoid patients have a greater CVD risk than can be accounted for with the traditional risk factors mentioned in your article. Therefore, CVD risks tend to be underestimated in rheumatoid patients2. Most rheumatoid patients do not receive a cardiologic workup, despite recommendations of experts such as Sherine Gabriel3 (Mayo Clinic) and studies demonstrating the need for baseline or regular cardiovascular evaluation.4 One study concluded: “Annual CV risk assessment using national guidelines is recommended for all patients with RA and should be considered for all patients with AS and PsA.”5
Furthermore, Rheumatoid patients often need to consult multiple specialists, such as ophthalmologists, pulmonologists, and cardiologists as well as physical therapists or surgeons to manage musculoskeletal issues related to the disease. This is in addition to the excessive level of comorbidity for various problems that require additional care from gastroenterologists, endocrinologists, or spine specialists, for example. However, preventive measures and coordination of care are rarely adequate.
I agree with the researchers’ supposition that many assume primary care physicians manage these issues, and that they usually do not. And, I suggest the following explanations may account for much of the discrepancy that that these researchers recognize and that we see in our community:
- Many assume that the risks are much lower than they are or that when these conditions occur, they are not related to the underlying rheumatoid disease.
- Rheumatologists may not be equipped to identify or treat the several possible systemic manifestations of the disease.
- Years of living with inexplicable symptoms tend to make rheumatoid patients more hesitant to address additional medical problems.
Ten years ago The Journal of Rheumatology reported, “Patients with RA do not receive optimal health maintenance and preventive care services. Efforts should be made, on the part of all physicians who care for RA patients, to ensure that these effective preventive services are provided.”6 We implore the rheumatology community to work together with patients and with the Rheumatoid Patient Foundation to address this crucial issue through expanding medical education and public awareness relating to the systemic nature of rheumatoid disease and establishing of minimal comprehensive care standards.
Sincerely,
Kelly Young
President, Rheumatoid Patient Foundation
POSTBLOG:
While I appreciate the MN article, I have one further observation about their analysis of the Michigan study. MN wrote: “Rheumatologists may be well aware of the increased risk for cardiovascular disease (CVD) among patients with rheumatoid arthritis (RA), but a recent study suggests that they may be focusing on the rheumatic problem while passing the cardiovascular one to primary care providers (PCPs), who too often are failing to pick up the ball.”
There is a clue here to solving this problem. As long as extra-articular disease is viewed as distinct from “the rheumatic problem,” then rheumatoid patients will not receive adequate medical care. Non-articular aspects of the disease are not “complications” of rheumatoid disease. Statistics and educational resources must be updated to reflect the actual incidence of these issues in rheumatoid patients.
An interesting recent comment from a reader
Tammy: “I believe strongly that the Rheumatologist should be the primary care physician that coordinates all of the care of a person with RA. This is a chronic illness that can have dangers if a person is seeing different docs and taking different meds. Something will fall through the cracks in the care… it always does for me.”
Edit 6/22/13: corrected footnote
Recommended reading
- The Mortality Dragon: Do Rheumatoid Arthritis Patients Have to Die Early?
- 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
- Problems with Preventive Care and Rheumatoid Arthritis Mortality
- More Warrior articles tagged “Comprehensive care”
Footnotes:
[1] Musculoskeletal Network. 2013. Cardiovascular Risk in RA Patients: Falling Between the Cracks? Accessed February 14, 2013 http://www.musculoskeletalnetwork.com/rheumatoid-arthritis/content/article/1145622/2127440.
[2] Kaiser, C., May 29, 2012. Cardio Notes: Heart Risk in RA Miscalculated. MedPage Today. Accessed February 19, 2013 http://www.medpagetoday.com/Cardiology/MyocardialInfarction/32959.
[3] Science Daily. 2007. Predicting Cardiovascular Disease Risk For Rheumatoid Arthritis Patients. Accessed February 20, 2013 http://www.sciencedaily.com/releases/2007/11/071107181025.htm.
[4] Desai, S.S., Myles, J.D., and Kaplan, M.J. 2012. Suboptimal cardiovascular risk factor identification and management in patients with rheumatoid arthritis: a cohort analysis. Annals of rheumatic diseases. Accessed February 20, 2013 http://www.ncbi.nlm.nih.gov/pubmed/19773290
[5] Peters MJ, Symmons DP, McCarey D, Dijkmans BA, Nicola P, Kvien TK, McInnes IB, Haentzschel H, Gonzalez-Gay MA, Provan S, et al. EULAR evidence-based recommendations for cardiovascular risk management in patients with rheumatoid arthritis and other forms of inflammatory arthritis. Annals of the rheumatic diseases 2010 Feb ;69(2):325-31. Accessed February 20, 2013 http://www.ncbi.nlm.nih.gov/pubmed/19773290.
[6] Kremers, H.M., et al. 2003. Preventive medical services among patients with rheumatoid arthritis. The Journal of Rheumatology. PDF Accessed August 19, 2010 and Abstract accessed February 20, 2013 http://www.jrheum.org/content/30/9/1940.abstract.
I had a horrible time with getting my primary care physician to send me to a specialist. I had complained for several years prior to her agreeing to send me to a podiatrist and an orthopedic specialist…the rheumatologist came later, only after the podiatrist requested an MRI that revealed bones eroding in my foot. It isn’t just the heart problems it’s with everything related…teeth, lungs, etc. it doesn’t matter which physician/specialist I see. Unfortunately, primary care physicians no longer coordinate care, it is left up to the person with this horrible disease to stay on top of their health. It is scary.
Claudia, thanks for commenting.
I agree that is often the case. It also seems to depend upon the jurisdiction (country or state) and very much upon the doctor himself. Some PCP’s can and do coordinate care, but not a majority, from what patients tell us. AND, it’s so important that all types of physicians become aware of the heterogeneous & systemic nature of the disease (that we might need to see several kinds of doctors to be treated properly).
Sad, isn’t it? I saw a doctor when my regular GP was not available one day, and had just described the excrutiating pain I was in, in detail, when she looked with a curled up face, at me, and said, “well, I don’t see anything serious here…you have arthritis.” I wanted to cry. I’m so glad she’s not my regular doctor or rheumatologist.
I was told by my primary the blood tests were negative so it’s not RA no need to see rheumatologist but follow up with an orthopedic see if its carpal tunnel. That was a year ago, now I’m on plaque nil, methotrexate, Celebrex , and just started enbrel 4 weeks ago and the pain, fatigue and weakness continues. I agree that the primary should be the rheumatologist but my question over the past year is when should you attribute the pain to something that requires a specialist and when is it just RA pain?
Alba, I don’t think it’s possible for most rheumatologists to be the primary doctor, but they should still be able to help you know when something may be related to the RA and what kind of specialist to see. One thing I’ve always said is that it’s a bad idea to assume any new symptom is “just RA” in case there is something that needs to be addressed or in case something could be done to get you relief.
Here’s another reason we (or at least I) may fall through the cracks someday when it comes to cardiovascular risk and disease: I always have chest pain, shoulder pain, neck pain and jaw pain. I often feel nauseous and woozy. I often get flushed or suddenly overheated. Every time I hear the ‘warning signs’ of heart attacks in women, I want to shout, “BUT THAT’S HOW I FEEL EVERY DAY!” How are we to know when the same exact symptoms represent a real heart attack as opposed to the myriad of painful and annoying symptoms that we all experience every day? After a few trips to the ER that I’ve later found to be unnecessary once I was there and they’d checked me out, I tend to get complacent and try to talk myself out of thinking it could be my heart; should I actually go to the ER every time it feels like I should, they will start sending me to the psych ward or at least write me off as a hypochondriac, and then when or if it really is my heart, I’ll be the girl who cried wolf. And I know this is ridiculous if it really could be a life and death situation, but I want to avoid the embarassment of yet another scene in the middle of the night with sirens and paramedics at our door and all of the neighbours in our close-knit community wondering what’s going on… I don’t want to be the house that’s frequented by ambulances. I’m wondering if there’s some sort of home device that RA patients could use to determine whether it really is something happening with the heart, thereby separating the false alarms from true cardiovascular troubles so we know when we really need to go in or call 911. Does anyone know?
Hi Lisa
Just thought I would throw my two cents worth as others may find it useful. I have severe RA over the past two years and am on a biologic and Arava plus plus. Since Christmas I have had four major chest pain events. Very painful starting in the left jaw joint, then down the neck and all around the chest. Oxycontin kills it but my doctors have been concerned that it might be a real heart attack. After seven hours of testing – MRI, stress test ++, three days in hospital and an angiogram then results indicate that the heart is in good shape. The implication is that my RA has arrived in the chest joints. I think there are about 23 joints in and around the chest. The treatment, should I have another attack, is to use Oxycontin or Endone and blast the pain away!!! I suspect that eventually the RA may attack the pericardium if my new and third biologic fails to arrest progress. From Sydney Australia.
Once again, thank you Kelly for an exceptional analysis of research and then tying these findings to the actual lives and medical treatment of people with rheumatoid disease. The idea of a comprehensive set of standards for rheumatology care in your post jumped out at me. I will be very interested to see further information about the process you might be considering for developing these standards from the patient perspective in cooperation with the rheumatology community. From all your work and the work of RPF, it seems timely for these standards to be drafted building on the ACR Guidelines of 2012 and other algorithms for treatment.
As in any profession, there are excellent PCPs and there are not so excellent PCPs. Rheumatologists probably will never be allowed to act as a “primary” due to the Medicare rules — it took something like 20 years for Medicare to allow gynecologists to act as a primary for women of child-bearing age.
good point Jessica. I see that happening de facto for a few patients, but for most that would not be the practical solution anyway.
I agree that it would be best if the care of rheumatoid disease patients, especially those with more aggressive or severe disease, could have their care managed by their rheumatologist, since so many of our non-joint problems are connected to inflammatory disease.
I really like my rheumatologist and have seen her for 10 years. A couple years ago, I asked if she could be my primary care physician also, and she said her rheumatology department had made a decision that they did not want any members of their department to function as primary care physicians. I think that was a poor and short-sighted decision.
There could be a middle ground though – where even though she can’t help manage all your health issues, she still helps you manage all of your rheumatoid-related issues. Of course that would only work with a doctor who is very knowledgeable.
Another good middle-ground solution would be a rheumatologist who will communicate / coordinate with a general physician so she at least knows what bases are being covered and which still ought to be addressed.
Once again the RA Warrior hits the head of the nail!
Kelly you are spot on with several of your analysis’ and comments in reference to my personal RA/RD history.
“Non-articular aspects of the disease are not “complications” of rheumatoid disease”
In my case it is the disease, Constrictive Paricarditis caused by RD was my path to the Mayo in 2001 for a Pericardectomy. Post treatment left me with a pacemaker and an active CV treatment plan. NO articular involvement!
I consider myself blessed to have found a PCP who is a Cardiologist and my Rheumatologist who coordinates care with my PCP.
My personal healthcare path brought me to this ironic pinnacle of benefits that I now enjoy, primary care being a dual focus of Cardio Vascular and Rheumatological care.
Lucky me, ahead of the learning curve due to RD choosing my heart to attack and play havoc with first!
Your Fan!
Janette
Hi Janette,
thanks for sharing. I’ve actually met a couple of patients who have a cardiologist as a primary doctor. A key point in your comment is having doctors who are willing to help you coordinate the care (ie: talk to each other). I wonder what could be done to encourage that or make it easier for doctors to do that.
Lisa, I’ve done the same thing! I have often had symptoms that seem to be heart related to me! I am very lucky to have a doc that is watching this very closely. I see her as often as I see my rhuematatolgist these days.
Thanks again Kelly for your great work!
First off, I am in Australia so our medical is slightly different. But I thought I would let you know the following.
On top of RA I was recently (2010) diagnosed with T2 Diabetes. With Diabetes, I had an initial review by a Diabetic Nurse, who sat me down and worked out a “Care Plan”, the government here covers 5 visits per year for the care plan, that outlined who I should go to.
So this was:
A podiatrist
A Dietitician (2 visits)
An optomotrist
etc…
This gets reviewed annually.
Why I mention this is because in the years (38 years) that I have had RA I have only ever been reffered to a Rheumatologist. No other associated care provider for any related illness that I am likely to get.
Very odd.
Thank you for your input, Glen. It does seem like this disease is a bit behind diabetes & some others when it comes to even recommendations of comprehensive care, much less prescriptions for it.
Using a rheumatologist as a primary care physician is an interesting idea. Don’t you have to first be board-certified in internal medicine before getting the accreditation to be a rheumy? I think that’s how it works for rheumatologist, endocrinologists, and a few other subspecies. This means they are fully qualified to diagnose and treat adults.
I would, though, worry a little about the tendency to see everything through the lens of rheumatology. For example, I (like many others around here) have thyroid problems. My endocrinologist would make a fantastic PCP, but I don’t think he knows squat about rheumatology, and my first rheumy was not too familiar with Graves’ disease and the drugs used for it. Of course nobody knows much about the interplay of the two problems, even though both are autoimmune.
I have a great family practice doc, but she’s quick to refer me out, too. (Probably a good thing: she ordered labs, and when my RF came back negative she assured me I could scratch RA off the list of possibilities.) She does look at all my labs and other tests, though, and on occasion her office has called to make sure I’m following up on things she sees in those and doesn’t like, low white counts for example. My experience with rheumatology is pretty limited- a little under a year and no clear diagnosis- but I’m starting to get a sense of how obscure it is. Orthopedic surgeons don’t recognize it, at least not before your hands fall off, my dentist had no idea if the huge honking hematoma in my mouth could be a side effect of MTX or Humira, and my optometrist was only familiar with plaquenil as a potential troublemaker for eyes.
Coordination of care is the biggest single problem in medicine from what I have seen. For anyone with more than one diagnosis, it is frustrating at best, dangerous at worst.
This is timely as my PCP has sent me for a cardiology workup, because we’ve exhausted everything else. When I walk up stairs I think I’m going to pass out and my heart pounds like crazy, but not during other activities. Odd things like that. We’ve exhausted blood sugar, blood pressure, etc etc. I put it off forever because it’s just one more thing in a list of weird symptoms to deal with. Thankfully my PCP (a wonderful physician’s assistant) already knew that I am more at risk for cardiovascular issues because of my autoimmune disease. My rheumy never mentioned it, EVER.
And what just as strange is that if you do ever have CV issues, they will likely never make it into your rheumatologist’s chart. Most rheum docs have little view of the big picture of the wake this disease causes in their patients’ lives.
Ms. M,
If you ever get to the bottom of your CV issue, would you please please please share that with us. I have the same symptoms and have been blown off by virtually every doctor I have seen, including my rheumatologists. They have no idea what a profound impact these symptoms are having on my life and I am also worried that they are missing something significant. I will do the same if my doctors finally take these symptoms seriously and figure out what’s going on. Thank you.
I’ll try to remember to update. My appt. with the cardiologist is in 2 weeks.
Hi Kelly,
I’ve been trying to figure out how to reach you to see if you had heard of RA patients having cardio problems. Then you come up with this article. THANKS!
Now what to do. I love my rhummy but he expects my GP to take care of any “side” issues. Problem is, my poor GP isn’t really up on all the side effects of RA, although he does understand RA isn’t just arthritis” and is very compassionate. And I’m just learning of the varied effects of the lovely disease.
My BP is VERY erratic in the 120’s then in the 160s then back again. My pulse from the 60’s to over 100 RESTING. GEEZ!
Has anyone else reading this site have these problems? Before RA, I NEVER had a high BP and my pulse was in the low 60s resting. Any input would be helpful.
Thanks Kelly, for all you do as sick as you are. Bless you!
Diana
Dear Diana,
Your case sounds just like what the article was addressing.
And it sounds like your docs are nice – they just aren’t covering all your bases with the RA. It’s wonderful to have doctors who are compassionate & don’t dismiss your issues! But it’s also important that they figure out how to help you get whatever care you need with this disease. If they don’t know an answer, make sure they give you a referral to a doctor who can help you figure it out.
Thank you for your kind words!
By the way, to read more articles on this site related to heart & RA, click here to see the list: https://www.rawarrior.com/tag/rheumatoid-arthritis-and-heart/
What I hope one day is that all doctors will realize these aren’t actually “side” issues, but part of the disease that should be addressed as a matter of course.
Thank-you Kelly!
I’m a little frightened by this whole cario thing because I’ve never had to concern myself with it before and i’m at a loss and feel so helpless as to what to do next.
Like I said, your article is timely.
Bless you and may YOU find a good rhummy!
Diana
I feel like I’ve fallen through the cracks. My insurance co. just dropped my coverage to visit my chiropractor because I have chronic pain. The policy stated if a person doesn’t see improvement the coverage will stop. My husband can see the chiro because he has acute problems.
My RA doc and chiropractor have written letters to send to the ins. company and the Insurance commission.
Hallo I am Daniela from Queensland,Australia.I have RA since 2002 and I am 58 years. I too like Lisa have this weird chest pains,neck pains,jaw and facial pains. My rheumatologist only looks at the disease itself and how the medication works or doesn’t work, so I told my GP who ordered a virtual angiogram which found no problems with the heart and no atherosclerosis. Simptoms are however persistent so I am putting it down to the disesase playing games with my body.Very unsettling!I am also in the care of an excellent Naturopath doctor and though natural medicine is not healing the disease ,is helping a lot with digestive problems due to the 7 years of Methotreaxate damaging the esophagus.I was on Enbrel for 27 months but had to stop it because I developed severe neutropenia I am now on Humira 12 months and have mild neutropenia so depending on the monthly blood tests if it gets worse I may have to stop Humira as well. So Good Luck to all of us with this RA. I hope that one day a cure will be found for all of us.
My PC has tried to take on the job of co-ordinating my care and has been clearly reading up on RA. When I first became ill, she recognized the symptoms and got me that rheumotology appointment even though the blood work was negative. When I talked to her about a second opinion, she agreed with me about the dearth of choices in the area and told me what she would do in my place. She has talked to me about lung issues and heart issues and she doesn’t know everything but I know if I have concerns I can talk to her and depend on her to take them seriously and treat them with respect. I feel for anyone who doesn’t have a dependable PC to help co-ordinate our often complicated care and to advise us. This is a chronic – life long – disease. Why do diabetics get so much attention and we get so little? Where is our coordinated care? My PC does so much for so little. I know she doesn’t make the kind of money that those specialists do, but what a responsibility!
Thanks, Leslie. Great input this morning.
A PCP who is curious to learn & listens well is so valuable. I’ve written about how thankful I am for mine too – although some guidelines & expertise about the disease would go a long way toward supporting what the PCP & I can accomplish together.
There are probably many answers to that diabetics question. One is certainly that we know so much more about diabetes & have for several years. We are a few years behind in the science with rheumatoid – many doctors still don’t realize the impact the disease can have – partly because as we see in comments here – if patients do get cardiology care (or eye care, etc), it rarely ends up in the chart at the rheumatologist. That’s why I said we need more complete data.
Research from Mayo Clinic over the past decade began to confirm these issues even exist. Years ago when two people in my own family died early with rheumatoid disease (heart related), I don’t think anyone realized there was a connection.
This topic is so very true and frustruating. I have had one sided jaw pain since my RD symptoms began, and associated it with RD. It’s not hard to dig up info concerning TMJ and an arthritis link. I have seen my dentist about this, he suspected tmj with some arthritis link. Ok fair enough. I just started Enbrel, and had an uptick in the jaw pain, so maybe not arthritis…, fair enough. I called my Rheum, and she sent me for a panoramic xray to look for signs of arthritis. I fully expected a TMJ diagnosis caused by arthritis. Just got the results, no mention of either, “just” some early peridontal disease, even though I just got a dental cleaning last month with no mention of this. So now I worry there is some infection that has been festering forever somewhere in my jaw, hence it increasing due to Enbrel, so I’m going back to the dentist. Now I’m sure I will have the dentist say “arthritis” again, and the Rheum won’t accept any responsibilty either. So here I am, with unexplained jaw pain, and no doctor that will even address it, they keep pushing it back on each other. Maybe I will try and ENT dr. next. I have fully realized that I’m in the drivers seat here, or nothing will EVER happen. I’m not even sure I want to fix the jaw issue, but I at least want an answer as to WHY it hurts. You would think that is the least they can do. The funny thing is the drs look at you for being a hypochondriac, or give you grief for looking stuff up on the net, but to me it’s a direct result of not getting answers and living with pain. A couple appointments ago I told her “what would you expect me to do after waiting for months of being in pain for an appoinment, of COURSE people turn to google”
Have you been taking fosamax or other drugs prescribed as bone builders. I am having jaw problems (osteonecrosis of the jaw)as a result of years of bisphosphonate drugs. Not sure on the spelling of that group of drugs. Because many of us have taken prednisone for years and years, our bones are so fragile that bone saving meds seemed sensible. We are so often in the “damned if you do and damned if you don’t” category.
Great response, Kelly, as always! I’m 48, not overweight, but suddenly have begun experiencing severe pitting edema in my lower extremities (my 13 year old daughter “wow, Mom, your calves look like a really obese woman’s!!”). I’m sure it’s either the kidneys or the heart (or both), but no one wants to “own” this part of my body – the Cardio says it’s the RA, the Rheumy says see a cardiologist. So, it goes unaddressed and untreated – save for home remedies. Frustrating when you know there’s something really, really wrong! Thank you for all you do for this community!!
Before I was officially diagnosed with RA, I was having severe symptoms of pain, swelling, stiffens in all joints starting from my shoulders to my toes, plus issues with my breathing.. It took a year and a half before my primary care Dr decided I needed to see a specialist and that was with the threat of a lawsuit..Little did I know that my sed rate was over 500, while my Dr told me nothing of this. When I finally saw my rheumatologist, he was in a sate of shock and dismay that I was not in his office before then..I was literally one step away from a wheelchair. I can see how a lot of patients and symptoms are put on the sidelines for what ever reason, it is sad.
Dear Kelly,
I completely agree with the quote you sited from Tammy. I’ll take it one step further and say that most specialists are unfamiliar with rheumatoid arthritis symptoms that overlap with their medical specialties. Any prescriptions I receive from specialists other than my rheumatologist make me very nervous. I’ve had concerns about systemic cardiovascular inflammation and I’ve even asked my general practitioner if I should take a daily low dose of aspirin to reduce inflammation. Her response was “Why would you want to do that?” I really don’t believe they understand the systemic effects of this disease.
When I first read the article I started to cry. I was finally diagnosed with RA in 2003 when it reared it’s ugly head FULL BLOWN a couple months after the birth of my daughter. I am now 45 and have been diagnosed with Congestive Heart Failure Left, Cardiomyopathy, and I have the Cadillac Model (meaning that it has 3 leads/wires) of an ICD (automatic internal cardiac defibrillator or internal cardioverter defibrillator) in my chest. By May of 2011 I had been very sick for over a year. I was constantly getting bronchitis (atleast treated for it anyways), I was shorter and shorter of breath, constantly nauseated and was weak and just wanted to sleep, and swelling in the legs and feet. I had been complaining to my PCP and my Rheumatologist about this AND the fact that my BP was a lot higher than it was normally and not going down. My PCP, as I said, kept treating me for bronchitis and telling me that the elevated BP was because I was sick. The Rheumatologist said the elevated BP was because I was in pain, the swelling was just a flare up, and as for the rest, “follow up with your PCP”. In May of 2011, my PCP’s Nurse Practitioner performed my regular “yearly” checkup. At this point, I REALLY started to complain about everything. Something else HAD to be wrong. She made me an appointment with a Gastro MD. One week later I am in ER with pneumonia and the ER Phy. is begging me to follow up with a Cardiologist she contacted while I was there. She was very thorough and had begun asking me questions to which my answers were the complaints I had been giving my PCP and my Rheumatologist the whole time. After I researched heart failure and saw the symptoms, I just could not understand how my PCP or Rheumatologist could not have had this even cross their minds, and I had no clue. I was devastated and felt betrayed. By the time I saw the Cardiologist, I was between 15/20% heart function. Thankfully I have since managed improvement. We definitely need help in keeping us from falling through the cracks any further. I have started by questioning them both about meds and treatments, and I ask a lot of questions of my Cardiologist who is the sweetest man who has been very helpful and if he does not know an answer, he tries to find me one. He has also told me often that his door is always open. Thank you for being an advocate and an additional voice for us all.
You’re welcome Julie. I’m so glad you got help in time and are improving!!
All I can suppose is it’s the lack of education about the disease that caused your doctors to sort of shrug off your symptoms the way the did for so long. I know many of us are shaking our heads since you shouldn’t have had to go through that – and because some of us have been shrugged off too sometimes.
Julie, I’m afraid that when doctors see a 45-year-old woman, heart disease of any sort is the furthest thing from their minds. That’s probably even more true if you are of a normal weight and generally present as “healthy” other than your joints. From Kelly’s article it is clear that the CV complications of rheumatoid disease are not widely known among medical professionals. Your story is really scary: 20% of cardiac function is not a good place to be!
Hi Glen,
That Care Plan is available for those of us with RA in Australia. It’s just that not many people know about it. Why? Umm,…..we’re falling through the cracks.
There is no coordination of care for RA sufferers in Australia either. I am hoping, that with websites like this one (thank you Kelly!) we can spread awareness and knowledge that will lead to change.
BTW You can have physiotherapy too with your Care Plan.
I am going today to get my blood work results to see if I have RA. I am so new to all of this and while I have symptoms, they are minor. My cardiologist is the person who encouraged me to get the blood work. Now, after reading this article and your comments, I see why.
Joanne J, do you mean CIMZIA? If so I started it 4 weeks ago, and I do feel better. I was also on MTX, but stopped this week, My Rheumy is trying the CIMZIA alone, for the next few months. I get tired and feel a little flu like for a couple days, but overall, swelling is down and I feel a big difference. The injections are kinda big and thick, and the injection site looks weird for a week or so, but it’s worth that to get some relief. Good luck to you.
Hi, just wondering if anyone has tried Cimvia yet. I’ve been on Enbrel foe almost a year, and haven’t been feeling as good lately. My doctor said my body isn’t responding to it anymore, recommended Cimvia. It’s on the way for shipment.
I have no diagnosis, but am one of those patients who googles symptoms and I’ve been having them for quite some time. So I went to the doctor yesterday and brought up the fact that my fingers, hands and wrists hurt about 75% of every day. I also told her the heels of my feet and my toes are extremely painful every morning for about an hour and some days the pain just stays. She looked at me and said “have your fingers been swollen at all?” I said yes, but not terribly where one would just notice it by looking. Then she totally changed the subject (not even bothering to look at my hands or my feet) and while checking my heart beat and breathing she notice some moles on my back and made a big deal about the moles which another doctor ended up looking at and letting her know they were nothing to be worried about. At this point I felt like “here we go again – brushing me off.” I had a year prior been in to see her because of hip pain which I still get from time to time. At that appointment she said it could be bursitis or it could be RA, but lets just watch it. I’m not an agreesive or even an assertive person and I get really nervous around doctors because they always make me feel like nothing I say is a valid concern. So she finally asked if there was anything else she could do for me and I said. “Can you check me for any autoimmune diseases?” She said “Well we can’t really just check for all autoimmune diseases since they require different tests.” I said well I’m concerned because I have several other family members who have autoimmune diseases and want to be checked.(I have two aunts who have two separate skin autoimmune diseases 1 of them also has Hashimotos, a cousin who has celiacs, my sister has scalp psoriasis) I have no idea why I can’t just come out and ask her to check me for RA – I guess it’s that fear of being made to feel my concern isn’t valid and so I beat around the bush thinking, hey I already gave you some clues as to what’s going on here. So she says well does anyone in your family have thyroid problems? I say yes I have an aunt with Hashimotos. Two other aunts with Thyroid issues, my mother had surgery on her thyroid when she was a baby and my grandmother had thyroid issues (all of whom are on my mother’s side). This doctor also already has this information as I typed up an entire family medical history and gave it to her a year ago. She says well we’ll test your thyroid. Ok. At least I got something. I just really wanted as much of this taken care of in one appointment as possible so I don’t have to keep going back. So frustrated and now am thinking about going to a different doctor, but I’ll wait to see what the Thyroid panel brings back.
The problem I am having is if I complain about anything other than my RD to my Rheumy he says you will have to see your PCP. Even though it clearly states on his window and everything he is also Internal Medicine and Rheumy. Then I go to my PCP and say something and it is well it could be related to your RD or RD meds call your Rheumy. So were do you turn. It is also scary when you go to Urgent Care and you know more about RD than anyone who works there. These people are suppose to be educated medical professionalist, really come on.
In response to the comment that a rheumatologist should be the primary care physician for a person with Rheumatoid Disease my response is that would be WONDERFUL…now can we get the doctors to agree?
My primary care physician will send me to the rheumatologist, the rheumatologist will send me back to the primary care physician…no one seems to know who should take care of what, and it is frustrating. I know I have stuff that needs attending but I don’t know whose attention to bring it to.
Meanwhile, my health proceeds to decline.
It is not fair to patients. It is not the best for their health, either. It is obvious that there needs to be a better way to go about this.
Jennifer
Dear Kelly and fellow RA sufferers:
I am now beginning to understand what everybody has been going through with doctors and them not understanding. I am at my wit’s end right now. At my last Rheumy appt., my doc suggested that I don’t have RA, because he doesn’t see swelling in my hands. I said they are still very painful. He said, “But there’s no swelling.” He thinks maybe I have osteo. I said, really? So here’s my questions to my friends here: does osteo attack your hands, feet, ankles and most recently, shoulders? My neck right now is so sore I want to cry (but I am at work so I won’t). Does osteo give you low grade fevers? Does it make you so fatigued it reminds you of when you were pregnant? I test negative for the RA factor, but when I take prednisone, my pain magically disappears. I was given Plaquinel last year and it took away most of the pain, and the swelling of my ankles, but I had such bad tummy issues (bloating, gas, etc) that my rheumy took me off. Last night I woke up crying because my shoulders hurt so bad. Tell me, am I crazy, or do you think this is RA?? My doctor put me on a lower dose of Plaquinel now and I take tramadol, which seems to help with my fatigue more than anything else. Quite frankly, I don’t know what to do. I also have back problems, which I have been going to the chiropractor for. It helps, but I don’t hold the adjustments for very long. Thanks for letting me vent. I live in the U.P. of Michigan and we don’t even have a rheumatologist closer than 55 miles. This board is such a blessing.
Marti, I have experienced almost the exact same thing. I have a new rheum who now suggests that I don’t have RA because of lack of substantial swelling. I am seronegative, but with very painful hands, feet, shoulders, knees and cervical spine of 15 months. I have also experienced a dramatic reduction in pain and increase in mobility with 10mg of prednisone. My feet look identical to the picture that RA warrior posted a few days ago.
Let me know if you’d like to correspond by email.
Kim
Kim,
It is so good to know I am not alone! I’m not sure what to think about what’s going on with me, but I do believe it is some sort of auto immune disease. And I would love to correspond via e-mail. I refuse to take prednisone any more because I gain so much weight and I feel bloated and then I get even more depressed. Unfortunately, I do not have a very good body image of myself. I will take it if I absolutely have to but only for a week at most.
Have you had the Anti-CCP test done? I am RF sero-negative, but my anti-CCP is sky high I guess. My rheumy treats me pretty agressively due to that. I rarely have swelling, but always have pain. He told me that high Anti-CCP is associated with a more agressive Rheumatoid Disease, so he treats and believes me even without the swelling.
Hi Marti!
I’ve asked Kelly to put us in touch. And I totally know what you mean about prednisone!! I have a love/hate relationship with the drug.
Kim
Marti, You need to find a new rheumy. R.A.seems affect different people in different ways.A good Rheumy should know that.
Marti- I’m not sure how to go about it, but I’d love to email you. I’m also in the U.P., and I’m having exactly the same problem.. Low blood inflammation markers, doctors not finding any swelling, but a ton of pain that gets much better with prednisone and methotrexate. My doctor discontinued methotrexate last August because he couldn’t feel any swelling and I’ve been in agony ever since. I’d love to compare notes about doctors around here if that’s at all possible.
Megan, where are you in the U.P.? It is so frustrating up here with doctors! Aaargh! You can email me at marticat@hotmail.com. I would love to hear from you so we can compare notes.
Hi Marti
I am so very sorry to hear that you are struggling with a diagnosis! It is tough enough to struggle with pain without having to deal with doctors who don’t listen.
Have you been tested for the CCP antibody? It is one of the more reliable tests for RA at the moment (although not 100% reliable as some RA patients still test negative). Then there is also the new Vectra DA blood test to consider.
Has your doctor performed an ultrasound of your joints? The ultrasound will pick up whether there is inflammation and joint damage(even if it is just a little bit)…my doc performs ultrasounds whenever I have the slightest bit of pain.
It does sound like RA to me (I’m not a doc tho’) – especially if the pain is on both sides of your body and you struggle with low grade fevers and fatigue – classic symptoms!!! If your doctor doesn’t help you – maybe you should consider going for a second opinion?
best of luck!
Diane,
No, I haven’t had an ultrasound as of yet, but I’m pretty sure they have run every blood test imaginable. So many of my symptoms point to RA, but also there are so many other autoimmune things it could be. I thought maybe I had that hypermobile joint syndrome because my joints are super loosey goosey lately, I can touch the floor w/the palms of my hands, my thumbs are double jointed also. My rheumy said I wasn’t double jointed enough for me to have that. I told him it would explain why I completely tore my ACL from swaying to music. He said that wasn’t his area. WHAT?! Why would he not want to investigate every possible thing it could be? Some doctors are overpaid for the amount of doctoring they actually do.
Hi Marti. Here in Namibia we do not have rheumatologists too, the nearest is in South Africa. My experience is the same most of the time I do not have swelling, I think it might be due the medication; cortisone, Celebrex, methotrexate and now Arava as from yesterday. But I found the pain in my feet, shoulders, hips and spine unbearable.
If you are lucky and having a Medical fund, it also would be a little easier, so hard times for some of us here. My best medication at the moment is a little God given 19 Months old, grand daughter (Lee-Ann Smith)who put a smile where it belongs most of the time. Regards Hentie Smith
Hentie:
I am so sorry that you don’t have any good medical facilities close to you. Boy, sometimes I complain when I really shouldn’t. It is awesome that you have a beautiful blessing like a granddaughter to ease your pain. I really love your spirit! I guess some prayers for each other wouldn’t hurt either. You take care!
Hentie,
I am so sorry for your difficulties, but glad for your grandbaby. They have stopped a lot of people using Celebrex here, but it offered me such amazing relief for such a long time. I still use it as a back up when nothing else works, but I don’t take it every day. Best wishes to you.
Hi Marti the same thing is happening to me. My vectra was 13 which is nothg the dr said im either in remission or the combo of meds i am taking is working so she won’t change a thing. But what she did mention is i do i have osteo and yes it is painful with swelling which i have on one hand and she said fibromyalgia so that might be where your pain is coming from. All i keep saying is my hands my hands but it is osteo i can’t open anything anymore. I have questioned if i even have ra but my ccp antibodies at one time came back off the charts so i guess the meds are working. I hope you feel better take some advil and alittle pain is better then much
Karen, the Vectra is a good tool, but there is no blood test for disease activity that works on everyone. If you still have painful and swollen joints with a high anti-ccp, it could likely be RA. I’m sorry your hands hurt so much.
Marti, we must have the same doctor! (Except that I live 1500 miles from you!) Does he interrupt you before you can answer the last question he asked? Claim that there is no swelling, even though the fingers on one hand are about 50% larger than on the other? What a friggin’ prince.
The genius I just saw says that the narrowing of almost ALL the joint spaces in my hands (not present a year ago) is due to “a little osteoarthritis” in my PIP joints, the bone loss around the joints is “subjective” and doesn’t matter, the deformities in one finger and several toes don’t exist, and has no explanation for the pain and loss of ROM in knees, elbows, a shoulder, etc. His big suggestion was that I go off my meds.
No, Marti, you are not crazy. Living in a remote area is tough. I had over an hour’s drive to go see this last guy after my local rheumy closed her practice. Medicine is both an art and a science. Too many of these people have forgotten the “art” part of it.
I hope no one is offended, but from this description, it sounds like they have forgotten the science part as well.
(How many of these guys are out there?)
What’s really scary is that this guy is head of the rheumatology deptartment at a teaching hospital. What hope is there for his students, the next generation of rheumys?
Reminds me of the newly minted rheum doc “Dr Tylenol” https://www.rawarrior.com/keeper-or-loser-im-not-giving-up-but-what-do-you-think/
Yes, we are getting a new generation with some same old notions. We have to reach them at the medical school level.
Some of these “doctors,” and I use the term loosely, shouldn’t be doctors. I had a really good nurse practitioner I was seeing, and she was wonderful. She would actually do research on me when she was home! She said she considered me a puzzle and it intrigued her. It was amazing to have someone who listened to me and seemed to care. Of course, her bosses moved her 60 miles away and now I can’t see her. I miss her terribly. I wonder if these doctors realize how much of an impact they have on our lives. It’s a shame how some of them treat us like we don’t matter and like we are making stuff up. A good doctor is truly hard to find and if you have one, hang on for dear life!
Marti ,
I am so sorry your rheum do not belive you .
I am also serum negative. Have very bad swelling and pain . Also have fibro which my rheumy seemed to zoom in on and blame for every think.
Until my last app i had not seen him for 5 months and was on no treatment . At my last app i was so bad could barley walk and could not use my hands at all.
So at last he took notice of me .
Put me on Simponi Injection.
I had been on Humira Enbrel and other stuff so when they did not work he said it was the fibro .
So i know how you feel.
Maureen Hugs to you .
It is amazing how many of our stories sound so similar. My hope is that rheumatolagists will become more aware and compassionate with their patients. If we speak (scream) loud enough, maybe we will be heard. That is why we should never back down, and never give up.
Marti
I’m sorry for your crap Rhuemy. I am also serum negative, but have had pain, deformity, swelling, joint seperation & malfunction etc. Thank God, I have a great Rhuemy. I wonder if these guys know that their attentiveness and willingness to find relief for our symptoms actually effects our day to day lives and ability to work? I get the impression from everyone’s stories that some of the Dr’s y’all have to see act as if you are there for a hangnail or some seasonal allergies. I am appalled at the disrespect and dismissal so many of us have had to deal with. We have avoided biologics so far, because my Rhuemy knows how important my work, with the public, in the world is to me. Biologics just supress the regular immune system too much to make that a viable option. Marti & everyone else, please hang on, keep looking, keep asking questions. Find a great NP or PCP if you have to. Someone who will treat you and your RA with respect and deference and help you maintain the quality of life that is acceptable to you for as long as this disease will let you! Trust that you know what is normal for you and your body.
Exactly the same happened to me. I was diagnosed in 2008 in France, I have just moved back to the UK and at the first rheumatology appointment the rheumy said he wasn’t sure I have RA because my hands were not as they should be for the period of time I have had it. My feet however are stiff and I have clawed toes so they seem right!
He ordered xrays and blood tests to be done and I see him in July. I have meanwhile written to my French rheumy and asked him to put in writing how he got to his diagnosis.
best of luck to you Coral. Are the new xrays of hands or of your badly affected feet?