Hi everyone...haven't been around for a couple weeks...was on vacation for a week, then spent all last week out of town seeing various doctors. My rheumy referred me to a Dr. for a second opinion since my meds are not helping very much. The second doctor is not 100% sure I have RA. The main reason being that I don't have the inflammation that commonly goes along with it. I do get inflammed during a flare, but as far as everyday...I am mainly dealing with pain and stiffness. Do you have some bit of inflammation in your joints on a more regular basis? Just trying to find out if anyone else has RA without much inflammation. A lot of my bloodwork is positive, but borderline positive.
Tracy,
I am like you. Yet, because I had a family history of RA, it wasn't long before I was DX'D. I am Sero-Negative for the RA Factor. It is not uncommon to have this form of the disease. You don't swell much not unless you are flaring...but...the constant joint pain on both sides, fatique and joint deformity is still present.
I don't swell much at all. My Rheumy was very confident it was RA even though I was Borderline for Lupus. Some doctors just like to see the signs...YET...sometimes, patients don't show much and you can't always look at the outer manifestations...sometimes...other symptoms will key you in as to what is going on.
So, you are not alone. Research what is called Sero-Negative Ra Factor RA and maybe even bring it up to you Rheumy at you next appointment. They can't bypass the fact...you may have it, instead of having Positive RA Factor RA.
Hope you feel better soon.
Roblyn
Glad to see again. I never swell up for my doctor. My knees swell, but that is because of OA. Of course, at home, I see swelling. It's like the body knows when I'm going in to the doctor.
Still I don't think I have near the swelling that others do, but my doctor is sure that it is RA and took his time is stating that.
If you have Lupus, you don't have the joint damage or swelling like you do in RA. But you will get the pain.
The other factor for me is that I have mixed connective tissue disease, which means several autoimmune diseases overlap.
There are several factors to based a determination of RA on. I forget the list. But blood factor is only one, swelling another. I think the bigger concern is that you are not responding to your current meds. What are they going to try or test to solve this?
Tracy, please do not hesitate to seek/ask for 2nd opinions BUT ALSO do not ingnore your gut/warning signs!!!
I had symptoms of pain and some swelling for over a year. My first visits to my Rheumatologist ended in her saying "nothing is rheumatically wrong with me", primarily because my RA factor was negative and x-rays did not show damage. Well, 8 months later, I have permanent damage in both hands (bone erosions), pain/swelling in both wrists, elbows, knees, hips and spine. Luckily my primary physcian believed in me and was continuing to see me when everyone else seemed to give up.
Now, I am back with the rheumatologist and we can tell she just feels like crap that she missed the dx. Bottom line, my experience taught me that doctors are human and make mistakes. They also tend to err on the side of caution and, unfortunately, waited until I had permanent damage before really starting the DMARDS. Even though research indicates EARLY PREVENTION/TREATMENT of DMARD is CRITICAL in RA since it PREVENTS permanent damage.
If you want to take off-line to discuss what happened to me, I am more than happy to do it. I figure perhaps this is why it happened to me, because God wants me to inform others so that it doesn't happen to them.
Wish you the best and god bless
Thanks for the replies everyone. My regular rheumatologist is the one that suggested the second opinion as she wants to make sure she is not missing something...since I am not responding well to the meds. She already dx me with RA...I had positive RF, ANA, anti-CCP...it was the anti_CCP being positive that really made her believe that is what it was. I have the pain in joints on both sides of the body, low grade fever....all the signs...just not the swelling. Of course, I am on prednisone and anti-inflammatories...so it could be just that. And the 2nd rheumy isn't ruling out RA, I think he just wants to rule out everything else...then he will try something other than the Enbrel, which didn't seem to work. I do think I have RA, but possibly have something else along with it? I guess I will just have to wait and see and talk with both doctors. The 2nd rheumy is making his recommendations to my original rheumy and we will go from there. I see my original one on Monday, so I will discuss what he told me and see what she thinks. I should, hopefully, have all of the bloodwork results the 2nd doc did as well to take to her.You are not alone. I have your exact story. I have tested positive on my RF and anti-CCP, but I am always normal on my CRP and Sed Rate tests. My first indication of ra was when I limped into my doctor and he noticed swelling on the ball of my left foot, yet I went for blood tests that day and my inflammation tests came back normal? I believe that the blood tests for inflammation are either not very sensitive or they are not measuring the right indicator for your problems. Believe me, its not in our heads - its in our joints.
Tracy,
I'm the same way. I had a positive RF (330) and Anti-CCP (370). Also had elevated CRP and ESR. Slightly elevated ANA, and abnormal results on C3 and C4.
I have pain without swelling also. At the onset, the pain presented in a migratory fashion; starting in the shoulder, moved to the a wrist, then an elbow. After a while, it settled in both wrists and most of the knuckles. I still have flares in other sites, generally the shoulders. The other day my left foot started acting up.
My RD believes I have RA but present in an atypical way. I guess everyone is different.
Cheri.
I guess I am not sure why you say you aren't inflammed with lab work that looks like this. An elevated CRP and ESR are indicative of inflammation. I can't see why anyone would question RA with your labwork results and description of your symptoms. Sounds rather "classic" to me.
Have they started you on any DMARDS yet?
Jeanne
Hey Tracy (and others),
I think it is important to know what the difference between swelling and inflammation is. I didn't know until I was told by my original rheumy as he was drawing fluid out of my knee.
Swelling is the body's natural response to protect an injured joint (such as a sprained ankle) by producing more synovial fluid to surround the affected joint. We've all jammed a finger and it swelled. We've all twisted an ankle and it swelled. Swelling is usually relieved by RICE. Rest, Ice, Compression and Elevation.
Inflammation is excess synovial fluid that is filled with white blood cells, or antibodies. It is our body's immune response to a bacterial or viral attack. In auto immune conditions, like RA, our immune system over-reacts and attacks our joints by producing too many white blood cells. The synovial lining is eventually worn away by the auto immune response and bone degenration begins.
That lecture over, one can have swelling without inflammation but can not have inflammation without swelling. The only way to tell the difference between inflammation and swelling is through blood work. Tests such as the Sed Rate and C-Reactive Protein measure the amount of inflammation at work throughout the body. Having fluid removed from swollen joints and tested for white blood cells will also determine if you have inflammation. These specific test, along with x-rays, help doctors differentiate between OA and RA.
Once anti-inflammatories have been taken for awhile, the markers for inflammation should begin to improve. My blood values have improved 7-fold since starting Kineret. Probably the strongest anti-inflammatory most of us take is Prednisone. Now, does taking Predinisone mask the inflammatory process in our bodies and in our lab values? If I knew that one I'd be a research scientist at the NIH or at a large pharmaceutical company. No, I am just my only advocate so I research everything! My doctors laugh and say that I know as much as they did in their second year of residency. It's a nervous laugh as well. I think doctors prefer un-educated patients who will follow their diagnosis and recommendations blindly without quesitons. Not for me. I want to know everything! My normal rheumy visit takes about 45 minutes to 1 hour. An educated patient...a doctor's worst nightmare!!!
Take care,
Joe
It is so good to hear I am not alone...and it's something I can take back to the docs as well.
Jeanne...my ESR and CRP were not elevated...but I tested positive for the RF, ANA and anti-CCP. I thought I sounded like a classic case as well with all of my symptoms and those positive tests...not sure why the 2nd doc is so stuck on the inflammation part. My first rheumy thinks I have RA...she was just concerned because the meds weren't working, that maybe something else is going on as well...which is why she suggested the second opinion.
I have been on prednisone, plaquenil, voltaren, prevacid, methotrexate, folic acid, and ultram, and I continue to be on these. I was on Enbrel for 2 1/2 months with no changes so I was just taken off of that. I have been on pred and plaq since January and mtx since feb.
Joe,
You said, "That lecture over, one can have swelling without inflammation but can not have inflammation without swelling."
My original CRP and ESR were elevated, but I didn't have swelling, so I'm confused. I had plenty of pain, but no swelling.
My RD started me on Plaquenil in 2004 and the CRP and ESR slowly returned to normal. I still have occasional flares of pain, but the inflammatory markers continue to be normal.
Hey Joe and Tracey! Glad to see you guys over here!!!
To answer the original question, my joints very seldomly show swelling, my labs are alway negative. My Sed rate was very high normal at its worst. I have always taken tons of Ibuprofen for all kinds of pain so maybe that was helping when I got hit with my first really bad flare that led to my diagnosis. I have had some visible swelling to my toes, and my ankles, oh yeah and my fingers....that is just on occaision...not every time I have pain or stiffness. It never seems to happen when I am at the doctor.
The doctor has always remained confident with the diagnosis, even though I have questioned it.
Hey Kay (where's Hello Kitty?)
KweenB,
Think of all the joints in your body where you might have inflammation with no noticeable swelling. Large joints such as the hips and shoulders are less noticeable when swollen than the smaller joints of the wrist, knees and ankles. I also have costochriditis (inflammation of the rib joints) but no visible swelling in the left chest. I have had inflammation in the covering of my spinal cord and of my brain. I have had pleurisy (inflammation of the pleural lining separating your lungs from the diaphragm). All these are part of an imflammatory process that included swelling. But was it noticeable? No.
Do you also take a NSAID such as Advil or Motrin or Aleve? These medicines will reduce inflammation. Don't think of inflammation in the same thought as swelling. I said you can have swelling without inflammation but not inflammation without swelling. Don't think in terms of a bulbous knob on your knee or ankle or where ever you hurt. The inflammatory process can be small and not visible, hence your elevated lab values. Take some medicines and lab values improve. As far as the pain is concerned...you may have osteoarthritis as well as rheumatoid arthritis. I have both in my knees. I was a former athlete and wore them out running and riding bicycles. Is the pain I feel walking up stairs from OA or RA? Who knows. I don't mean to sound as a know-it-all. It's just I've spend hours researching everything about RA. On the internet, at the library, talking with doctors and talking with you guys.
I'm also an engineer. I research everything. Like most engineers, I will not do anything until all points are covered.
Take care,
Joe
From the sounds of everything, it looks like they are trying to find out if you have another autoimmune problem going on in addition to the RA. That's a whole other story and entirely possible. In that case, they want to figure out exactly what it is so that they prescribe the right medication.
Seems that each of these autoimmune problems have a major medicine that they use, while some of them overlap like Prednisone. I think it is good that your doctor is seeking another view point. A lot of doctors wouldn't because of their own pride. If something else is going on that is causing you not to respond, maybe they can find it and get you on something that will show some real results.
I think this is the list Deanna was talking about on the last page. The one that list the different criteria for dx'ing RA:
The criteria for the diagnosis of rheumatoid arthritis (RA) are the same for older and younger persons:
1998 revised American College of Rheumatology criteria for classification of rheumatoid arthritis. Patients should have at least 4 of the 7 criteria, and the first 3 must have been present for 6 weeks or more
| CRITERIA | DEFINITIONS |
| Morning stiffness | In and around the joints, prolonged (lasting at least 1 hr before maximal improvement) |
| Arthritis of > 3 joint areas | Inflammatory soft tissue swelling or fluid in at least 3 joint areas simultaneously, observed by the physician. This reduces the joint spaces |
| Arthritis of hand joints | At least one joint involved in the hands |
| Symmetrical arthritis | Simultaneous involvement of joints on both sides of the body |
| Rheumatoid nodules | Aggregates of inflamed subcutaneous tissue cells which collect over bony prominences or extensor surfaces, or in juxta-articular regions, as observed by a physician. The skin is thin and fragile above the nodules. |
| Severe rheumatoid factor | (rheumatoid factor is an antibody to the Fc portion of IgG and may be responsible for amplifying the inflammatory response in the synovium) Abnormal levels should have been measured by any method that has been positive in less than 5% of normal controls |
| Radiographic changes | Classic changes must include erosions or unequivocal bony decalcification, localized or most marked adjacent to the involved joints. Osteoarthritis changes alone do not qualify |
Involvement of joint sites in established rheumatoid arthritis
Note that late-onset RA is:
Not all the features of RA are present initially, as many develop over time.
Note too that:
Once the diagnosis has been confirmed, the severity needs to be considered to inform management decisions. The core data to be determined from clinical assessment have been internationally agreed and are:
These measures give a good overall picture of RA and permit assessment of progression and response to treatment.
This was posted in the Newbie section a long time ago....thought I'd move it over for this conversation.
Thanks...It is pretty informative...