Video: Good Rheumatoid Arthritis Doctors Treat Patients
Rheumatoid Arthritis doctors who treat patients are good docs.
Good doctors examine patients carefully and listen to their reports of symptoms. Good Rheumatoid Arthritis doctors don’t rely on lab tests to tell them who has RA and who is in remission. Good doctors treat patients, not charts.
I’ve met a few rheumalogy specialists who have told me that sed rate is the sole indicator of rheumatoid disease activity. However, I’ve read the journals. I’ve talked with thousands of patients. And I’ve met a couple of good rheumatologists who have taught me that blood tests, even sed rates, do not track well with disease severity or disease activity.
If you enjoy my video, please “Like” it on YouTube and share it through Facebook or Stumble or Twitter. This is an important topic for RA doctors and patients.
Psst read about How Dr. Space Heater got the name – click here.
Recommended reading:
Kelly,
I’m glad you found a good doc. That makes a big difference. From some of the stories I’ve read, I feel lucky to have the docs that I do. From my PCP that recognized my symptoms and quickly referred me to a rheumatologist to the rhematologist that I have that did’t necessarily treat me according to my conflicting lab results and responded more to my symptoms of pain, stiffness and inflammation.
One comment about a “bad” doc that really struck me from somewhere in your blog was a comment made by someone that said something to the effect of “I’m a Rheumatologist and I treat inflammation not pain.” Pain is a very real symptom of RA and should be treated if the patient needs it. I just can’t fathom the logic of that doctor’s statement. If you had a broken bone would you accept a doctor saying, “I only set and cast broken bones, I don’t treat the pain.” or if you went in for surgery, “I only cut you open and fix what’s wrong, I don’t treat post-op infections.”
Yes doctors are smart people, but sometimes their logic and thinking is flawed. It is sometimes hard, but you really need to be your best advocate. I’ve wanted to yell at and dress down a doc myself in the past, but that wouldn’t have gotten me anywhere. I find the best approach is to push in a way that respects their position as a physician.
A cure for RA might never come, but we can always dream. I’m encouraged by the advances in the last decade or so. While not perfect they’re a step forward. Sometimes it helps to put chronic diseases in context. A very good example of this is diabetes. If you look back to the turn of the century, a diagnosis of diabetes was a death sentence much like many cancers still are today. We still have no cure for it, but now diabetes is a manageable disease and many people can live relatively normal lives.
There’s so much I could say. I’m glad you’re still reading – or listening – in this case. ;D
One idea: RA damage is not always caused by what we consider “inflammation” – at least the kind that we can measure. I’ve read abstracts that I can barely understand that show me some researchers know this. And I’ve met patients with all “negative” blood tests who have tremendous erosion, deformity, and tissue destruction occuring. So, docs who think the “inflammation” is all that RA entails have a bigger problem than just being insensitive. Their patients are subject to greater damage due to their misconceptions of the disease – & subsequent under-treatment of it.
Another thought on inflammation: Our measures are inadequate. It may indeed be present when we say it’s not. Some examples have shown that tests are a snapshot & it can vary through a day or a month and the “markers” we have can be influenced by many things, including longterm otc nsaid use. There are even “inflammation” markers that can be caused by obesity, but are not present in very sick RA patients who are withering from the disease. Inflammation is not something that is well enough understood to use in the way some clinicians do – as the “all in all.”
I have a lot to say about the diabetes comparison. I’ve used that comparison for a long time & it is a good one to study when considering our next decades. I hope I’ll publish a post soon. I know I did quote a rheumatologist who explained there are vital contrasts that other rheum docs must understand. I’ll go see if I can find that link. —
Got it – okay here is a recent one I’ve quoted by Dr. Pincus but there are other “comparisons” and “contrasts” to be discussed – as I said.
Of course, you are also right that pain itself should be acknowledged and treated. Patients tell me of a wide variety of responses to this as well: From rheum docs who say “RA is more painful than broken bones. It is the hallmark of RA” to rheum docs who say “Don’t ask me to treat your pain. That is not my concern.”
No arguments from me on your response. Lately I’m tending to think that the inflammation is only the outward symptom of what is really causing the joint damage not the cause of the damage itself. I’m still studying though.
Have you ever run across anything that explains the mechanism behind the symmetry of RA? I was thinking about this a few weeks ago when my knees were just killing me. I’d never had any history of knee problems, and then one day both knees simultaneously were stiff and really painful. It was like my body said, “We’ve been working over the fingers and toes for a while, lets give those a rest and go after the knees.” What is it about some joints that cause them to be affected equally on both sides of the body while other joints are spared?
That is a fascinating line of questioning. I have no clue about symmetry. And why some don’t even have it (obviously one of many variations of RA)! I’ve always been perfectly symmetrical even w/ sx on a daily basis. I had no idea of what RA is & what was occuring. Yet it moved quite sytematically through my body in a regular fashion you could compare to a military campaign. Could it have to do with the synovial fiberblasts (sp?) I’ve read that move through the hosts system quite early in the process? I’ve seen DIP’s flare – each one in a row for months – and then it moves up the fingers to the next joint – in both hands of course. There must be a clue here.
And yes, there are some patients who do have some joints spared, but others who have all joints involved – that was a stunner to me when I first got busy online. I was shocked to learn how different we are in that. Must be another “variation” of the disease. This is the advantage we have as patient researchers or patient journalists honestly: We are more likely to accept what other patients tell us about their disease since we notice these differences first hand. I worry that too many researchers are like the doctors in the current discussion. They are working with too many pre-concieved ideas about RA that aren’t nec. right. I hope not. Do you think so?
It is way too hard to generalize since researchers span the spectrum from people finding new targets to discovering new drugs to clinical testing to suggesting new treatment regimens. The people on the cutting edge are definitely thinking new, but you always have to contend with the status quo. For a stark example of this look up the story of Ignaz Semmelweis.
Well, we are laughing out loud in my house right now that none of us could remember the name of the guy who “invented germs.” Haha. As a homeschool mom of 5 kids born with midwife care, I knew the story. But I think we may remember the name from now on.
I think so, Kelly. I think they spend so much time studying their medical books, that if something isn’t in those books – they just immediately discount it. The problem there is: the human body is much more complex than we will ever fit into a book or into a series of lectures. What reason would I have to lie about having a problem that ruins my life? Why can’t they listen to us?
Also someone mentioned symmetry… I am one of the RA’ers who has RA on one side mostly in each type of joint. I have no pattern or reason figured out for this – and RA doesn’t have any reason to it in general; considering I have flares whenever my body decides to give them to me. I have it everywhere in my body, but it’s worse on certain sides. For ex. my right wrist is really bad, but the left looks almost normal. My left elbow – horrible; my right elbow – almost normal. I guess I should be thankful?!
Sorry about your joints. LOL. I’ve looked at a couple of books about RA that were wrong. That’s when I decided I had to write about it myself. :-/
I like the story about switching docs. I just made that leap myself, after some time of thinking about it and what the consequences might be (good or bad). I just saw the new doc on Monday and he did some x-rays and blood work along with an interview and exam. I wasn’t real impressed with his manner, but I’ll give him a chance until I see him next week to discuss treatments options and the results of the labs etc. I have several dx’s including bi-polar d/o, which I’ve had for many years now (before RA) and the two definitely affect each other greatly…..which means I need someone to TREAT ME THE PATIENT and not just my RA! I didn’t see any acknowledgment from this doc of that. You hit the nail on the head when you said how hard it is to take yourself to a new doc and tell your story to all over again, hoping that they’ll see you and not just a single disease, or a single lab result (and maybe, just maybe, they’ll hear you too). Thank you for all you do, Kelly, that gives us all a sense of community with people who actually get us!
PS You should have said to doc space heater, “I hear what you’re saying, but do you hear what I’M saying? I don’t think so.”
That’s so true. Oh there are so many things we can think of now. I was too startled at the time. :O
Thank you so much for your video…. You are an encouragement to us in this battle. I have been fortunate to have, from the beginning, a very good rheumy who I was referred to by my PCP, who also takes great care of me.
Because of your hard work and dedication, I feel surrounded by encouragement and friends that keep me going when I couldn’t by myself. I don’t understand why we have to go through this battle, but you have helped lighten my burden by equipping me with knowledge.
I pray God’s blessing on you and your family and I wish I could do something for you in return for the comfort and reassurance you have given me. Until then, know that you are loved and prayed for earnestly.
Diana
Thanks, Diana.
Oh my gosh, you do something for me in return every time you read & comment and spread the word. We are all in this together for the same reason – to help each other and all who come after us w/ this horrible disease. :heart:
You have a true Warrior spirit caught in a frail, challenged and painful body. I can only assume the doctors are taken back when you speak up. Thank you for sharing your most intimate health issues and trials. Your story is mine in so many ways. However, my current Rheumy doesn’t even talk sed rate unless it is off the charts, she knows I am in pain daily, after years of looking I have found a keeper.
I have one nagging question, how are you able to change Rheummies and go into see them within a week or two? If I try to schedule with my Rheumy I would have to wait 4-6 months to get in to see her. I normally set up appointments way in advance,God can only help me if for some reason I can’t make the appointment and have to wait another 3 months to see her.
When I lived in Colorado the local hospitals couldn’t recruit a Rheumatologist, many patients had to be redirected to their GP’s for lack of specialists or travel 250 miles to a specialist in a larger city. I witnessed a revolving door of Rheumy’s they would settle in the area get overworked and leave. I tend to put up with my Rheumy because of the lack of choice in this specialty, luckily I have had a fairly good Rheumy for the last 6 years.
Thanks for sharing Kelly.
Janette
Thank you, Janette.
I’m sorry if I confused you. When I said “a couple of weeks” in the video, I was referring to my making up my mind & making that phone call to get a new doc. The wait to see the new doc was a couple months – several weeks. There is a shortage of rheum docs & it’s getting worse. I talked about that last week here – click here.
I have not spoken up to those doctors who were supposed to be treating me to tell them they were wrong. So far, I’ve just left. The ones I saw last year, who declared that a normal sed rate meant “remission” and no RA pain, did not seem to have a frame of mind that would be influenced by the opinions of a patient, as I said in the video. So, I just left. But since then I’ve given a lot of thought to sending them letters with some documentation that they are misled — or with Dr. Space Heater of perhaps filing a complaint letter to the American College of Rheumatology.
When it comes to my kids, I’ve always been much more assertive, but I’m determined to do better for myself. And hopefully for all of us, too.
Great video Kelly! It really helps a lot to hear you say that you still have pain and stiffness and weakness, but low sed rate and crp with high RH factor. That’s where I am as well, but I do have a doctor who treats me, the patient and doesn’t blow me off as in remission. Again, you’ve propelled me forward to get answers and keep fighting!
hi kelly! thank you for sharing this video. you are an encouragement.
while watching it and hearing you say what your previous rheum doc told you, i was shocked at what he said. i can’t believe he just looked at your lab results and didn’t even bother to ask your current condition (if you’re experiencing pain or whether or not your joints are inflamed, etc.). i guess that my rheum doc isn’t like that one is something i should be thankful for.
well, we’re all in this together…we’re gonna continue to fight RA. 😀
God bless!
Being in this fight together means so much! It really helps. :soldier:
I only saw Doc Space Heater that one time. Would you believe I saw 3 docs like that in a row last year before I found this one? I had no idea what was in store when I went to look for a new doc. (The one I had for a long while before that was a really compassionate person, but did not let me change Biologics or ever have an x-ray in 3 years.)
Here’s one article showing that some “clinical remission” RA patients still have subclinical synovitis and inflammation going on.
http://onlinelibrary.wiley.com/doi/10.1002/art.23945/full
I’ve read other articles/abstracts regarding the dissociation between inflammation and joint damage, one in particular discussing TNF inhibitors, but am unable to locate them just yet.
I can see in your video how hard this has been for you emotionally too. More RA docs need to be willing to see that there is still pain despite clinical remission and to keep seeking the source(s) of this pain. It should not all be written off to FM.
The cholesterol connection is an interesting one in RA. I don’t know about Actemra and the need to go off if cholesterol is affected somehow. I think there are cholesterol irregularities in RA. These may differ at different points in the RA disease process itself, and certainly are affected by various DMARDs and biologics. How detrimental each effect is – is something that still needs a lot of study. It may be that for some, cholesterol results will be better if their RA disease activity is declining. There are some studies on trying to add statins as treatment for RA because of some of the anti-inflammatory effects of statins, aside from their cholesterol lowering abilities.
Cholestoral increase was found during trials to be an early indicator of damage to digestive system which can occur as side effect of Actemra.
I was not in clinical remission, even as it is defined. I was barely able to walk or move. Constant fevers, flares in dozens of joints, stiffness, new nodules forming… The new doc didn’t think it was remission either. The new doc took the initiative to point out internal swelling in numerous joints (that was visible to me already). That inflammation was obvious upon examination, even though it wasn’t “obvious” from across the room. I think what we’re dealing with here are some rheum docs who only practice by labs only – for whatever reason – we may speculate. And we will – as we attempt to influence the system for improvement.
I really don’t get remission – whatever it means. Nor do I get (by that I mean understand, but no I don’t ‘get’ it either) clinical remission. If you still have swelling of any kind, or pain or anything that is a sign of RA, then the disease is still active in my mind. Whether you can see it or not, whether you have a lot of pain or not… lets call things what they are; if you have cancer and it’s only a little bit killing you, would you claim it was in ‘remission’ or ‘clinical remission’? I truly don’t understand…
Great video Kelly. Thanks for sharing. I feel very fortunate for the Rheum Doc that I have. He definitely treats the patient. Always has and I’m grateful every day. And also, he and his RNP have their own law firm. Yes, my Rheum Doc is also a lawyer. He and his partner are actively involved in the representation of patients who are being denied access to medically necessary treatments and procedures by HMOs and/or insurance companies. I’ve never had to use those services from him, but interesting, no? If I ever needed it, at least I know I have someone to turn to.
I’d love to hear more about that! Do you think he’d like to be interviewed? 🙂
I will check with him when I’m in at the end of the month. I’ve never talked with him much about it, but I bet it would be fascinating. I’ll get back to you 🙂
Kelly,
I have had many “Doctors” give me their opinion as to whether I actually have a condition or not. One doctor told me Fibromyalgia doesn’t exist. He was conducting an EMG on me at the time. If I had known better at that time (this was 15 years ago), I would have jumped off the table and ran away.
I do have Fibromyalgia. I also have RA. My RA was not diagnosed until three years ago after my hand surgeon was unable to reattach my torn ligament to my noticably misshapen MP joint. He did blood tests for RA and I tested positive for RA.
My fibromyalgia was diagnosed 30 years ago by a young but wise rheumatologist I saw for pain that I described as “my skin hurts”. My blood tests did not confirm a diagnosis of RA at that time but I did have the sensitive trigger points for a fibromyalgia diagnosis. I suspect I had RA back then due to joint pain in my hands and feet. Doctors I saw at that time told me it was due to osteoarthritis. I thought only old people got RA so I never questioned the diagnosis, even when the joints in my hands started to get big and bony.
This following story is my favorite. I have a history of Osteoarthritis, Degenerative Joint Disease, Degenerative Disc Disease and Degenerative Scoliosis. I guess I hit the jackpot on spinal conditions. The EMG 15 years ago was being done to find a reason for my sciatic type leg pain. Two years and two doctors later it was finally diagnosed with a Myelogram from hell. One of those two doctors was a neurologist who told me my pain was all in my head and there was nothing wrong with my spine. Please note that I had this pain only when I stood up and all my studies were done while lying down. I’d love to send this man the op reports from my last six spinal surgeries. I’d also send him a picture of me with my walker and me in my wheelchair. (I have peripheral neuropathy in my legs and feet due to spinal compression of my lumbar spine. I got rid of the sciatic pain but my legs never went back to normal.)
My pain was always thought excessive for my condition. Well “duh”. I didn’t have one type of pain, I had many different pains.
My Rheumatologist was my savior.(Yes I am one of the lucky ones) She validated that my pain existed. It was not all in my head. Now we work as a team to find a medication that will calm my disease. I’m on Orencia right now and hopeful as always. I also work with a pain management doctor to try and keep my pain levels in the liveable range.
We should not be surprised that these toxic doctors are out there. Human beings come in many varieties of good and bad.
And yes, doctors are human. (Some less human than others, it seems) It might take time to find a good fit but its well worth it.
Thank you for letting me vent. Your blog has educated me extensively about RA. You have helped me cope with the loss of the life I had before RA. I am working hard to believe that the before RA Beth is one and the same as the post RA Beth. That only the body has changed… I appreciate you for showing me how to be a warrior against RA.
Beth
Beth,
That’s well said – the same Beth the whole time! :rainbow: And yes, some say “It takes all kinds.” I say, “Well, I don’t know about that, but there sure ARE all kinds.” 😉
Great teaching tool on listening! Thanks!
Thank you!!
Wow, Kelly. Big virtual (less painful) applause for your fine work here. You tell this story with so much grace and dignity that it lands as much compelling than if you’d pitched a fit on camera.
Thank you, Meredith.
I laughed out loud at “pitch a fit.” LOL. My goal is more respect for patients from docs, not less. But you know what? If one of “those” docs saw the video, they’d probably label it as pitching a fit anyway.
This video will be very helpful to many. As you know, I went though this myself and came here for help. I had high RF and Anti-ccp and elevated sed rate and crp at diagnosis. After starting MTX the sed and crp went way down, but I still had pain and inflammation. I got the “you’re in remission” talk too, and fibromyalgia dx. I moved on to a new doc, who doesn’t test sed rate and crp on a regular basis. He too, listens to the patient and withdrew the fibro dx. I’m glad you finally found the right doc Kelly!
Michael Patterson, I am the same about one side being affected, especially early on. It is what kept me from being dxed. As a result I have permanent joint damage.
Hi Kelly,
First off I want to say how brave and beautiful you are! You truly are an inspiration and it’s people like you that make changes and with this disease something has to change!! I have some questions for you if you wouldn’t mind giving me your input. My husband has RA, i’ve written before to tell you about him. Anyways, lately i’ve been noticing his right hand (that already has nodules on each finger) seems to be getting worse. Also, his wrist seems to be getting a nodule on it. He is currently on a biologic (always forget the name! and he’s not home) and methotrexate, prednisone and also Mobic and a couple other pain relievers. He’s been on this med for at least four months. He just started the MEthotrexate again since we were noticing the changes. (He stopped because we plan on trying to get pregnant soon but that has been put on hold:()
My question for you is when you’re on a medication that is working, do you still see joint deterioration or does the progression stop? His pain level seems to be controlled to an extent. I just don’t know if he should wait it out a little bit or switch meds. I don’t want his hand to get totally deformed before we do something. (I know these are questions for the doctor but I just wanted your opinon considering you have much experience with other’s experiences!)
Sorry this is getting long!! 🙂 My last question is do you use any herbs or vitamins? I just went out and got the hubby Ginger and Turmeric so i’m hoping this helps a little. He was on a much higher dose of Prednisone for a LONG time but finally cut the dose in half which is currently 15mg. Yes he was on 30mg for TEN YEARS! Unbelievable I know. So the Turmeric is supposed to naturally help produce Cortisol so I hope it helps.
Well, that is it for now, to sum it up my question was do you continue to see progression while on medication or is the progression just slowed. Unfortunately I see surgery in our future, unless GOD performs a miracle which I believe he could but that’s a whole nother story! 🙂 xo
Hi Linda,
I’m impressed by your dedication to help him. I love talking to spouses! I’ll just give my opinions. Link to disclaimer.
The treatments can supress or slow or control the disease, depending on the patient. They don’t work as well on every patient. If you know it’s progressing & not supressed (because of symptoms like you describe), then the doc may either increase the dose or change medicines. Please read this recent post on when to change Biologics. The dmard (mtx is best working) is continued w/ the Biologic in most cases to make it work better / longer.
Surgeries are like rescues if you need them. So, if he ever needs one, he’ll be thankful that he can get one. Don’t worry about that now.
Vitamins and herbs? There can be effects from them, but there are side effects to anything that you take in a dose large enough to be therapeutic. And there can be interactions with the prescription meds. So, clearing with your doctor is always best. There are several posts here on diet & also natural cures. Use the Tags dropdown gadget to find them.
I’ve actually heard from several people who were on such doses of pred. Isn’t it remarkable? I really hope you can have that baby someday soon! Did they tell you about 3 months off mtx to get it out of his system before ttc?
I can’t figure out how to reply to your comment up there so i’m writing it down here! 🙂 Thank You for getting back to me. I think we’ll wait it out a bit to see if the Methotrexate kicks in and hopefully with the combination hopefully it will surpress it! Or else it’s on to the next.
Also, yes his Doctor has told him about being off Methotrexate for a while. Thanks for making sure! He plans on staying off it for about 6 months just to be safe. I’m not to bummed out because I should finish Nursing school anyhow..I just really want babies! 😉
I really am Thankful for this site and all the great information you dig up for us. I know it’s a lot of work to research all the facts and everything else that comes with running an informative and reliable website. Your doing great though and it’s helping lots of people! So Thanks;)
Have a great rest of the weekend!
Thanks very much. I hope he improves!
& Oh you are so right – there are countless hours no one could imagine. Lots of all nighters when it “breaks,” too. 😛 Thank you for noticing!
Great job, Kelly. Very moving, especially since I went through some of those experiences over the years because I”m seronegative. Thank you
Thank you, Lyn. Hopefully, that will change. 🙂
Kelly, Thanks so much for putting your video up here for us to see. I am thankful that my rheum doc treats the patient, too. He is the ONLY one in our county, so we are all blessed to have him. My sed rate is never elevated and he mentions that, as a comment. He seems to see that as ‘interesting’. He listens to me, and sometimes doesn’t….in this regard..once I thought I was doing OK. After his actual hands-on exam, he told me, “I’m not happy. We’re going to change biologics”. I am a registered nurse, practiced for 40+ years. I was taught to look at the whole patient, and don’t fixated on numbers (normal respiration count but patient is cyanotic). You are so right on. I’m glad you have this doc that sees you as a whole and not lab results. I pray you see results from Actemra soon. I am early in Rituxan treatment…had two IV’s and now wait. God bless you, Kelly. I look forward to your posts every day.
P.S. Didn’t realize you are a home school mom. I am a home school grandmother! I have raised two grandchildren from ages 5 months and 3 years. Now they are 15 and 18. My disease onset began at age 52 during the horrible stress of realizing that I had to raise children all over again. My dear husband raised them with me until ’05 when cancer struck him down. You are amazing for home educating your children, researching, doing this blog/videos/commentary AND fighting RA! My sense of RA community blossomed reading your blogs and the comments. Count on my prayers.
What a great thing to do for them! I have 3 teens in the house now & a 5 yr old. There are 2 in high school & 1 in kindergarten now. It is the most wonderful thing in my life. Thank you so much for your prayers.
Thank you Phyllis. Great hearing about your good doc. Go Rituxan, go!!
I absolutely agree with you Kelly!! I have shared my short story with you on facebook a month or so ago!! I am struggling here in Wisconsin to find a good Doc. I work in health care and was always with the understanding that you go into the field of “caring for patients” because you actually CARE!!!! My next Dr. will have to meet the requirements of having RA and/or AS themselves,or in close family members. Otherwise, they cannot lay their hands on me! Talk to you soon Kelly, hang in there I know how horrible it feels and how much pain your in…
Tiyana Hoose
Milwaukee, WI.
I can’t wait to hear about who you find! I agree it would be good to refuse to see docs who don’t see “caring for patients” as a priority. Do you think we could reach them early (in medical school) and teach them about what the disease is like enough to make a difference? Probably not as much as what you suggest – a doc whose sister has it for example. If a doc had mild RA herself, she could still practice, but she’d have a skewed viewpoint from mild symptoms. Catch22 there?
Thanks for your video, wow – that story wants to make me run to my rheumy when I see her later this month and give her a huge hug. My anti-CPP was 88 and my Rfactor was 98 but the sed rate was within range, and based on a verbal history and those labs she told me she was almost positive I had RA when we were sitting in her office for the first appt. After she told me this, she did a physical exam that lasted close to 45 minutes, and I left with scripts for MTX and plaquenil. She identified joints that were slightly swollen that I didn’t even realize. My wrist was slightly swollen and one finger joint was tender, but not terrible – so if I’d been with that first guy you talk about, I’d be at home with a bottle of Advil. I also have a diligent family doc who ran the bloodwork despite telling me she was pretty sure it was soft tissue only. I thought the anti-CPP was the new gold std for diagnosis, especially when combined with a positive Rfactor?
Appreciate you telling your story so others know to fight for a second opinion. And I’ve really enjoyed reading your posts over the past 6 weeks as I get my head around the diagnosis (even though I’d much rather be spending time researching something WAAY more fun).
best – achymom
Aww, give her a hug from us! 😀
Thank you for sharing too, about how it should be, so other patients can see & have hope of finding a good doctor too.
This sounds like my story and for many others.
I sat here in tears watching your video. I had a somewhat similar experience with the exception of a High RF, High Sed Rate and an Abnormal CCP. Although I have never showed any visible signs of swelling in my body, not even my hands nor feet. I walked into the Rheumy’s office on the sides of my feet, walking “normally” using the bottom of my feet brought tears instantly and just wasn’t worth the pain, so I walked on the sides for almost a year while seeing this “Doctor”. This is the final EMail I received from him…
“CCP is abnormal. However, this test, while very specific does not prove you have rheumatoid arthritis.”
Even my MD was confused with that one! It took another 4 months to get into see my new Rheumy, who looked at the same test results as the last, and she immediately started treatment. I have always read that the sooner the treatment the less permanent damage to the joints. I feel I was robbed of a year of life. The year I did nothing but lay on the couch because walking was too painful and if I moved my right thumb, all the bones in my wrist locked together and ground together and popped, the year my daughter was a Junior in High School and didn’t have her Mamma, the year she had to take care of me while her friends were out having fun.
In less than a year with my new Rheumy, I am now doing much better, am on MTX weekly, Enbrel Injections weekly and just weaned off Prednisone. I am able to work a full time job again and Thank my new rheumy every time I see her for believing me and giving me my life back.
Thank goodness for you new rheum doc too! And thank you for telling your story!
A positive anti-CCP result could happen w/out RA, yes – in rare cases 1-2%? But with those specific symptoms & the other lab results? I’m so glad you finally got help & have so much of your life back now.
Thanks so much for sharing the video. I know your frustration at docs who don’t treat the patient. I have had a few myself. Thank you for all you do to keep us informed. God Bless you.
Cammie
Thank you, Cammie.
I watched your video thinking how heartbreaking it was! And how strong you are! My first diagnosis was seronegative RA but that has since changed to Psoriatic Arthritis and Fibromyalgia. I drive over 90 miles to see a Rheumatologist when the only one in our town retired. We just got a new one into town but I’m not sure I’m going to change because my current doctor really listens and really trys to help with pain. I have only scratched the surface of your wonderful website but I have learned so much already. Thank you!
Hi Karen,
Let me know if I can help you find something. Yes, a closer dr is not better than a good one. Keep a good one is my vote. 🙂 :doctor:
I had a similar experience with my first rheumy. I was sent to that rheumatologist, via a osteo specialist that did some x-rays, took some blood and told me because of my very elevated sed rate and crp I had .something. autoimmune. I didn’t have an elevated RA factor. When I saw my first rhuemy he did blood work again, and it came back very elevated again, and he said it was probably a normal high for me… yes, over 70 as normal. My pain level was awful at that time, and he wasn’t listening at all. So I came home, (I had been going to grad school) and saw my primary care at home, who believed me, and sent me to a specialist that she said she herself would see if she ever had joint problems. And this doctor did blood work again, it came back elevated and put together aaaall my symptoms. In short, PsA. Which tends to be difficult to dx, or so I’ve read.
She’s a wonderful rhuemy too. 🙂 I’m glad you’re confident in your doctor. It feels good when you have someone who feels as though they are working .with. you, to treat your illness. 🙂
Thanks for sharing your story here, Elizabeth. I think it helps others to keep trying when they read what you’ve been through to get treatment. What was the 70 level for? Rf?
Kelly, the over 70 was my sed rate. Didn’t even explain half of the reason why I posted my story, on either end, whether you just have a high Ra factor, or just have a high SED, a doc might do a bit of a brush off. And no problem, sharing a similar story to what you experienced with possible newbies I hope will help them to keep on looking for a dr who will listen. 🙂
Hi Kelly
It’s Kathryn from Australia – have had laptop issues so had to rejoin on my temp laptop. This post is not about me – that comes later.
Kelly you are such an inspiration to me and I feel blessed to have found your site.
However right now I just wanted to thank you for your bravery in allowing your vulnerability to show on your video – you are so courageous. I don’t presume to know you -but I kinda feel that it would have been very difficult for you to show that side of yourself. Thank you so much for all that you do and I just hope that you get as much support as you give to us all. :heart:
Thank you Kath! :heart: We spell my daughter’s name with a y also – from my grandmother, Kathryne.
DITTO KATH!
Kelly,
Intresting experience the other day at my rheumy visit. Had new ultrasounds – only of my hands and feet. The problem was on that particular day, I had no inflamation showing in my hands and feet. Inflamation was in my knees and hips. The inflammation in my knees was visible on MRI’s I had done a few days earlier by the orthpedic Doc. According to the radiologist I was in remission. How come he could’t see inflammation I could feel?
At least my rheumy seemed concerned about my hips and knees. Not impresses with the radiologists.
I always want to talk with you more, Amy. 🙂 You have hit on something crucial here. I’ve been observing & reading about this over the last year and a half. It was a huge step to post the Swelling Confession in Feb. Not just for me, but it was a turning point in my learning because hundreds of people spoke up via comments, FB, emails… and said they had pain or disability when inflammation wasn’t present and shared different ways doctors handle that. Did you read the comments above? I’ve had a discussion here w/ another person about the inflammation issue. Seems to me the problems are these: 1) Obvious inflammation may not be the cause of all RA symptoms or damage. 2) We do not have reliable ways to measure it. 3) The definitions of remission are greatly lacking because of the lack of understanding of number 1 & 2.
Ultrasounds: This relates to number 2. There is a series of posts here on ultrasounds. That might help the discussion some – I’d love your comments there after this experience. I have talked with patients who have severe RA damage w/ “normal” inflammation markers or ultrasounds – we are just not good enough at these tests yet to do that – to override what patients say they are experiencing. That is what the video demonstrates. That radiologist does not understand RA. I’m sorry – that just touches exactly on what the mission of this website is – if he is unaware that the inflammation in your hands can vary over a period of hours or days & that it cannot be measured reliably enough by ultrasound anyway, then he is bound to make mistakes & mistatements. These instruments are to be the tools in hands of doctors not an end all & final answer. I’ve had a number of good doctors praise this video for pointing that out, Amy. I’m excited that I got an email from one who is going to use this in his classes (he is a professor at a medical school).
That’s nice – I’m honoured to have the same name as your wonderful daughter. Apparently I was named after Kathryn Grayson – the actress, but whilst I’ve met many people with different spellings – it seems that Kathryn is the most unusual (and being biased I think the nicest 😉 )
PS And tonight I’m back to my usual laptop (I may find myself fluctuating between the two!!)
Oops I think I hit the wrong reply. I meant to reply to you Kelly. Hope I did – now my brain too??? lol
AWESOME JOB KELLY!
Thank you for your encouragement, faithfulness, never ending support and quest for knowledge!!!!
You are APPRECIATED and LOVED VERY MUCH!!!!!!!!!!!!!!!!!!!!
Kelly, I’m sorry that you have to go through these struggles with silly things like the sed rate. I have had sed rates of over 90 down to 20 now back up to 49 in the last ten years that we have watched it! You are right one DR will be frantic the next will say it wont mean a thing. I have asked many “why if my sed rate is down do I have so much pain?” They seem to all agree that my joints have damage existing from a past flair. I am beginning to think that they only really know its RA because I have had surgeons verify RA during joint removal. But some DRs also say I have OA in addition to the RA. Now with the sed rate going up I fear another flair is on its way.
Pain is pain, we know you are familiar with pain and your more familiar with RA than many DRs that I have seen so Im very sure the insurance co. will receive a grate education from you on this matter!
Keeping you in my prayers! Virginia
Dear Virginia, Thank you for the great comment. I loved how you called the sed rate “silly”!
I’m afraid I don’t agree w/ those docs who say the pain must be from a past flare. I came to this full blown RA quite suddenly after years of brief flares. When it came on like a freight train, there was symmetrical pain in every joint with sudden tendon weakness, loud cracking, & mild swelling. There was a normal sed rate from day 1. That was the reason I was not diagnosed earlier – they’d say “She can’t have RA with a normal sed rate.” Well, now I know that’s hogwash. And I know a lot of patients like me.
By the way, I HAVE heard from some patients whose RA was only diagnosed because the surgeon saw it!
I loved the video, Kelly. You did a great job and even more importantly, your new doctor is doing a great job! His diligence will help you find a medicine to put you into remission and his wonderful, caring bedside (chair-side) manner we keep you encouraged and give you validation for all that you are feeling. I will thank my doctor for you, too. He was the first one I found who actually didn’t tell me all my pain was in my head! I travel a little over an hour to see him and it is so worth it. I’ll never forget one appointment I had with him, he asked how I was doing and I began comparing myself to some of the patients in the waiting room who were obviously much worse than I was… he stopped me and said, “I want to know about YOU! They don’t have anything to do with how YOU feel!!’ What a great encourager… that means a great doctor to me, too!
Thank you so much, Kelly, for this video. Thats exactly what im going through right now. You have given me alot of insight of what to expect from different doctors. Thank you for all the time you take to help us!!
Thanks, Waynette. See, I told you I might know how you feel. LOL. Don’t give up. I know you won’t – you are a fighter.
Not treat the pain? If it wasn’t for the pain I wouldn’t even know I have R.A. Its the worst part…Ok wait the fatigue is the worst part…umm no the people (including docs) that say OH you look fine, yeah that’s bad! Keep going for all of us Kelly, and thanks. My doctor is “pretty” compassionate. However, I’m on my 4th drug not sure its helping any. Next comes the shots. Before I let them do that I am going to take a piece of my own advice. Go get a second opinon. I know its a pain…but I’m already in pain right so…here I go.
Hi Jody, Thanks for the laugh. :O Yes, there’s pain anyway. So, we keep doing our best.
Thank you for the inspiring video. This is important information. I was very fortunate. I asked my Primary Dr. to send me to an Rheumatoid.specialist after my primary said mt sed. rate was elevated.I had been discharged from the hospital unable to walk and needed a wheel chair. My first visit to my RA Doc.he was very thorough and there was no question if I had RA. He put me on meds and pain meds when needed and gave me a written plan for treatments and test results. I was out of the Wheel Chair and walking with a walker and now with a cane. I had setbacks, but working together we are going in the right direction. Thank you for what you do. :-))
Your video and your site have been a blessing to me tonight. I’m in tears as I write this so please forgive any typos! lol! You see, I have had the opposite problem. For years my joints have ached but alas, I am RA neg and I don’t get much visible swelling. Which means you guessed it, it’s all in my head! Doctors would give me aniti-inflammatories and antidpressants and send me on my way. Then about two and a half years ago my sed rate and crp’s went through the roof, but I was still RA neg. At this same time my mom was diagnosed with severe psoriatic arthritis with holes eroded in her feet. I was scared to death! My primary, who was also a friend, sent me to the “best” RA doc in town. In three visits he did no xrays, all he did was change my anti-inflammatories. As if I haven’t already been on every one on the market! Then a miracle happened. He was going to be busy and sent me to one of his partners, a rather young woman. She xray’d my hands and feet and found severe osteopenia. That was a year ago and I’ve since been on methotrexate and humira with no success. She has not rexray’d anything, although I hurt from jaw to toe. She says it doesn’t matter, my sed rates are high and I’m hurting so it’s not getting better. Tomorrow I start Remicade. I’m worried that I’m not bad enough for it. I guess I keep thinking that I should be RA+ and maybe it is all in my head. Between my boss that tells me I just need to change my diet and my co-workers and patients (i’m a hospice nurse) that say, “You don’t look like you have RA,” I continually doubt myself. I’m thinking that reading your blogs and everyones’ comments will help me. Every RA IS different. I don’t deserve to hurt and my kids don’t deserve to have a mom that comes home from work and goes straight to bed. I shouldn’t have to crawl up the stairs in the morning or ask my twelve year old to open the juice or watch my the weeds take over my flower beds or God forbid, be afraid I’m going to screw up my patients’ meds because of my brain fog. Not just because I’m RA negative! Thank you for reminding this nurse that it’s not the labs that matter, it’s the patient!
What a stunning comment, Dee. Best of hope for you to tomorrow w/ the Remicade. I hope it works wonders. Let us know how you do.
I am seeing anew physician next Friday. It going to be interesting how he acts and behavior. I am taking my life partner and P.O.A. so he can’t b.s. us. Others want to blame my situation on my COPD and T.I.A.’s. My Sed rate is not normal; however the dismissed Rheumatologist would not talked to me about possible treatments recommended by my Humana Case Nurse. Thanks for what you are doing. Thom Cady
Good luck with the new doctor, Thom.
Love your blog. Love the video. You are an inspiration to all of us with RA who are out her fighting to feel better and function in the world. THANK YOU SO MUCH! Please keep doing what you are doing. 🙂
I am currently taking Enbrel, Methotrexate and Celebrex to manage my RA. I just recently went to my Rheumy and based on my filling out some forms and drawing on a chart identifying my affected joints, he totaled them up and stated that my RA was in remission based on the new RA criteria. He excluded the joints in my feet from the count! He stated that feet are no longer included in the count. I was shocked and said nothing. How can my feet be excluded? They hurt me so much. I struggle with pain in my feet constantly. I would love to exclude the pain from them, but I don’t want the DR. to exclude them! What the heck?!?!?
Rena, this is common. I agree with you – tell me feet your little rules!! If you disagree w/ the rheum doc about how he classifies your RA or what he writes in your chart, I think you have the right to add a written statement. And maybe a 2nd opinion would be good. Sorry you have to deal w/ this baloney on top of RA.
WHAT? Feet don’t count? Absurd.
Technically, that is supposed to be changing – with new guidelines.
I had asked my Rheumy which was better and why. His response – it depends on the individual. Sometimes the CRP is elevated and somethings it is the sed rate that is elevated. Knowing the patient’s pattern, one or the other is followed. One may be normal, the other may be normal or BOTH may be normal. It is the clinical picture that is important!
great point! that’s a good doc! :yes:
Hi Kelly,
I am thrilled you have found a real doctor. I had a great Rheumy doc in North Carolina. 25 years in practice, he knew his stuff. When I was first diagnosed, getting to his office was a nightmare. The parking lot has a slight hill coming down from the building to the parking lot. I wanted to crawl because my feet hurt so bad, but my hands would not take the stress of crawling… That was the first visit and the last one that was a problem. One week of Prednisone, then I started methotrexate and we played with Arava a bit. The methotrexate did the job in the end. Life was good again.
Then I moved to Florida, Unemployed, no insurance. My NC doc gave me some extra methotrexate to hold me over. It was not enough. I went a couple months on no meds. Finally employed, found a Rhummy doc (my first bad one) She wanted me to participate in a study she was doing. But did not want to give me meds till the next visit in 2 months…Aaagggghhh. That was the last time I saw her.
I found another, that by pure luck turned out to be a teacher to my Rhummy doc in NC!! He has been at this a long time. The bad news is the break in meds allowed the disease room to breath. The end result could have been much worse.
I am on Simponi once a month, methotrexate injections weekly and Celebrex daily. Along with a host of supplements folic acid etc. 16 pills a day. I take a liquid multivitamin just to not have another pill and use it to wash down the rest.
The good news is most days I am almost pain free most of the time. I have gone from being a mechanic to office work to lighten the load on my joints. I would much rather be a mechanic 😉
I want to scream every time someone tells me it is all in my diet!!
I was in the Marines. I know what it is like and how to function even in pain. RA pain is not the same at all. You don’t grit your teeth and tough out RA pain. It wins until you get the really big guns.
For now I feel very good. I expect the Simponi will stop working someday like the Humira did. For now I am very thankful something is working.
I do pray your new doctor and your knowledge will get you to a much more comfortable place… 🙂
Thank you so much for your Blog… I think my Rhummy doc is reading it now too 🙂
God Bless,
Ray
I couldn’t agree with you more. My hands look the way they do because of a doctor I had who was an internist and decided HE would treat me instead of sending me to another RA doc. He kept removing my meds saying I had no sign of it and within weeks I would have a huge flare. He did this twice and that’s when I TOOK CHARGE. You have to. This past year I changed doctors two different times. I think finally I’m where I need to be. One should NEVER ‘settle’. That’s not good enough. I’m finally on the second of the big guys, Orencia, and it has worked splendidly for 3-1/2 years now! I’ve had RA for 19 years.
kmh
Thanks for the good advice! I wish I had heard it earlier, but I’m learning.
I really appreciated your video today Kelly. I saw a new rheumatologist yesterday after my old one left the area. He seemed to listen to me, and did a very thorough joint exam, asked if anyone ever told me I had FM, to which I said yes.I requested Dr’s notes when I went in and the girls at the front desk made a notation and had me sign it, which was a first for me. I hope they will be offered when I go back in a month. At the end of the appointment, the Dr. said he was going to treat my FM before trying anything more with the RA.I was started on Lyrica, and will increase it over the next month. This was probably because I was on Humira for a year and developed a melanoma, so had to stop.
it seems there are no answers at times, and I know there are no miracles. it is hard to keep trying, but I feel better about this Dr. than I have for years, and had very nearly given up…
Thank you so much for posting this; your words were just what I needed to hear after yet another discouraging visit with a rheum… I met with a new rheumatologist three days ago and my experience was eerily similar to yours. My hands were not swollen enough, my blood levels were “normal,” so no enbrel for me, it must be fibromyalgia. (Then I was POKED so hard in the fibro trigger points, some were sore for two days.) The kicker came when I hesitantly disagreed, and was told, “NO inflammation, I have the lab reports from December right here.”
“But what about the bloodwork I had done when I saw you three weeks ago?” I asked.
“Oh, that must still be in the computer, let me check. Hmmmm…64…you DO have inflammation. Alright, I’ll get the ball rolling on the enbrel.”
Somehow, that number had more validity to her than my description of the pain in my hands and wrists that kept me awake at night, the pain in my ankles, toes, neck, jaw and elbows. I guess a patient’s subjective experience of her own pain is not viewed as reliable. So frustrating. Lucky(?) for me I got the magic number.
Wow. Lucky for you indeed. These “inflammation” numbers don’t reliably correlate with disease activity or pain. To think that the doctor would have withheld the Enbrel if you didn’t get that one elevated result.
I finally have the best Rheum doctor. Of course it took me around 8 yrs to find him. Now I am 36 yrs old and I am not able to get out of bed any more. my left knee is bent slightly more then 45 degrees and my knee joint has grown together and I cant move it at all. My right leg is slightly better but not much. My arms are the same as my legs. I am this way because of the lack of care from doctors. Some doctors were stubborn, some ignorent, some tried but my insurance discouraged them until they gave up. My last doctor ONLY treated the pain not the RA. He was my doctor for 5 maybe 6 yrs. During that time I asked him every appt (usually once a month) about refering me to a rheumatoligist and he always either told me yes he sent the referal or he’d put me off somehow. I also asked him about the new medications like Rheumacaid or humera (sorry about the spelling cant recall how) he would always get upset because he hated patiants asking about medications (he even had a cartoon framed that made fun of a patiant who is asking about a med she saw on t.v.) and he would tell me I am to far gone for those that they cant help me. About 2 years ago he finally told me that my insurance doesnt have a Rheum doc that if I “wanted” one I needed to change my insurance. I felt just like you descrided, at my lowest point. So I found out the name of my moms Rheum doc, switched my insurance and had him contact my doctor to request a referal. About a year after that my reg doc stopped accepting my new insurance and told me I need to switch again. No way! I finally had a doctor that was treating the RA not just attempting to cover the pain. So I no longer see that doc now and my new general prac doc is a clinic I never go to I only see my RA doc. Recently I was able to go to USC to talk to a specialist about hip and knee replacements and he’s agreed to give it a shot. He said he’s never seen or heard of anyone as bad as I am not even a patiant with MS. I wont be able to walk again more then likely he says, even with the replacement surgeries. If by chance I am able to he feels it will be very difficult and painful but maybe he can make life a little easier perhaps more independent hopfully less painful. I am not feeling as positive as I once did about the surgeries or even about life. I desperately need to talk to someone like you. I’ve never talked to anyone who said so many of the things that I’ve said thought and felt. I understand when you got choked up when talking about the docs, I am the same way. Never have I felt as low and down as I have lately and I need to talk to someone thats going through or went through what I am or have. Thank you for this site, its a lifesavor…… 🙂
I am in need of some serious advice. I am currently on my 3rd rheumatologist. On our first and only visit, he ended the conversation stating he doesn’t believe I have RA. This of course was a shock to me because the other two rheumatologist believe I do have RA and have treated me with Plaquenil, Methotrexate, and Imuran. He said his reason for thinking I just have fibromaylsia is because I show no signs of swelling.
I know where my pain is; its in my bones. The next day I saw my massage therapists and she became so angry when I told her the story because she said she can “feel” the inflammation in my body. She worked on me years before I became sick and the last two years since I was diagnosed, she can tell a difference. Someone please give me advice. I am considering going back to my first doctor. The reason I left him is because of his nurse and they don’t draw blood in the office. I have to go to out patient lab which costs me a $1000 deductible. Other than that, I trusted him and looking back I should have never left.
This was an amazing video, I thank you from the bottom of my heart.I don’t feel like to lone ranger so much now. I am 55 years old and I have always been physically active.This RA hit me about 8months ago. I have been devastated, mentally and physically! I have no insurance (paying cash, no doctor of value! it has been horific. I am looking hard for a RA doctor to treat the patient. Also trying to get insurance that wont deny me for having a pre existing condition. Because my test are negative as well but he is treating me with the chemo and the other meds, so when the insurances are trying to approve me, they don’t because of the medications. Although there is no tests that demonstrate I have RA. So, thank you so much for the video, I am trying to hang in there. With work, childrend, and all the othere life activities. I came on here looking for some shoes and got a lot more than I bargain for. God Bless
Im 16 months in to this, and no consistent diagnoses. Thank you for your advocacy.
I see my Rheum friday and I will share more control with her, its hard to drive when so helpless.
Wrote this tonight, hope your readers understand where Im coming from, few in my life do. Im a 44 yr old dad and im not allowed to be broken.
.
My Haiku:
.
Bones cracking like Ice
Killing myself from within
Murdering my dreams
.
Chris
Thank you for sharing the Haiku, Chris.
Kelly,
I am so glad that you found your doc! Take care and keep fighting. You are a true teacher to this RA newbie and I can’t thank you enough.
Kelly, thank you for your video presentation. I have great respect for you, and your ceaseless efforts to help others. I have read hundreds of comments and a large portion of articles on your website. God has worked through them and you, and others with RA to encourage and motivate me. I have so many similarities to those diagnosed with RA. Thank you. At a later time, I will send in my story. I just wanted to thank you. Gentle hugs to you and your family.
Hi Kelly,
I found RPF yesterday while on Pinterest and found some posts regarding RD. Today I watched your video “Good Doctors Treat Patients”. Your video sure brought out the tears! Finally found someone that I can relate to and let me tell you how good that made me feel…I am not loosing my mind!
The sad part is I feel my husband doesn’t even understand RD although he says he does. I know he doesn’t because I am not a grumbler and feel bad if I don’t get up and do my usual everyday work. So I push myself. I am not mad at him I am just frustrated. I remind myself that there are others in this world that have it worse off than I…
One day I made an apt to see my RA Doc and he wasn’t able to see me for months and they suggested for me to try his ARNP. I did and she is really a great person, but I feel like the tests are more important to her than my voice. I know my body and that should account for something.
Thank you for your video. I cannot tell you how you made my day so much brighter.
Good Luck and Bless you!