Interesting, I went to the Ortho today to discuss my upcoming shoulder surgery. He couldn't understand what that stupid Rheumy was saying about me not having RA. Of course, he's looked at the xray and MRI reports. He's a very busy man, but he took the time unlike my Rheumy.
I told him that my bloodwork had been good that last couple of times. He said that seronegative RA is usually more severe than that shows up on bloodwork. This is one of the best Orthos not only in Phoenix, but in the country.
He really couldn't believe the Rheumy thought I didn't RA. Really? Really? He kept repeating it. He barely refrained from calling him stupid. I however do refrain from the said.
I feel really comfortable with this doctor. He said that the two knee surgeries and the shoulder were both a snap and I'll be functional really fast. This is so exciting for me as both knees are shot and so is the left shoulder.
I think that I personally would ask that he document this either in your chart or a letter to yourself... That way if you need another RD or documentation of such in the future you have it !!! Plus be sure to obtain the MRI results and whatever other results that doctor may have that he came to this DX.
Good luck with the surgeries !!!!
Isn't great when you get a doc that actually takes 3 seconds to really pay attention to you? I am happy to hear that he thinks the surgeries will be a snap!! You are going to feel so much better after getting these things fixed, I just know it!I forgot to mention that in my case, he does not want me to go down on the Prednisone at this time because I'm Prednisone dependent and the surgery could cause a flare. He said he would be giving me an extra dose of Pred when he does the surgery to counteract that possibility. So again, he counters the Rheumy who didn't even want to listen to me about the surgeries. Such a close-minded man.
I am so glad that you had good Dr. appointments today! It is about time.Is the ortho saying that seronegative RA is usually more severe than RA with elevated blood work, or did I misunderstand this?Deanna, I am so glad that someone is listening to you and feeling your pain. It makes such a difference. I hope the shoulder surgery works for you. I have had shoulder pain in the past 2 months, and it is not like anything else I've ever experienced - and I'm sure mine is a tiny, tiny fraction of what you've been going through. Until you feel it, you have no idea how much you use your shoulder. And how much pain it can cause when you try to sleep!!! I had no idea.[QUOTE=Scout]Is the ortho saying that seronegative RA is usually more severe than RA with elevated blood work, or did I misunderstand this?[/QUOTE]
Yes, I believe so. My tests for RA, Vasculitis and Sjogren's were all negative, but my SED rate and inflammation were both high which you would think would be enough especially since I gave him a summary of my medical history (this is the Rheumy). What I said is that my bloodwork came back normal and that is when he said that seronegative RA is usually more severe.
Does that clarify or simply confuse? I think it is interesting that this comes from the Ortho because he is the one that actually seeing the internal damage on our bodies. He is completely convince that I have RA. I just wish there was something we could do about those seronegative morons who only look at bloodwork as a diagnostic tool. They are the ones causing a great deal of harm.
I just got back from the Dr and she checked one knee with x-ray which shows erosion and bone thinning and I am sero-negative at least as of last April. Obviously sero whatever doesn't mean a whole lot. One of those morons would have just let me cripple which is why I am soooooo blessed to have the team of Dr's that I have.
She did write me Rx's for Enbrel, a TENS unit, and a transport chair.
Cool about the prescriptions. So......I've never shown up in bloodwork...I'm confused....Is it to say that I'm considered possibly more severe??? I'm so lost....I was told by my rheumatologist that seropositive is more severe, and that a very high rheumatoid factor is associated with a poorer prognosis.
>>In some cases, a person can have RA and not have a positive RF test. This is referred to as seronegative RA.
RE seropositivity in patients with RA is associated with a more severe disease course. Extra-articular manifestations are seen almost exclusively in RF-positive patients.
Seronegative RA is a distinct, though usually less aggressive, form of the disease. Some investigators believe that RE-negative patients are in an early phase along the disease spectrum, as some of them eventually do seroconvert. Patients who become RE positive as their disease progresses have courses parallel to those of initially seropositive patients. <<
I'm confused as well now. Scout you have me totally mixed up. I'm testing negative after 6 years of bloodwork. But my former Rheumy never said about what was positive. He was always convinced that I had vasculitis, then Mixed Connective Tissue Disease, then polyarthritis, then Sjogren's, then Rheumatoid Arthritis. It would probably take someone hours to locate all the blood tests. But I know the last three have shown no RF factor but a high SED rate. I know I have damage in my joints.
So which is it? Seronegative is more severe or not? My brain is dead. Please help me.
Extra articular is lung, heart, eyes, etc.
Sero neg is usually less severe; although it's a bit meaningless as you might switch to postive at anytime.
I've always tested sero neg and my disease is considered severe. (and I've had "extra articular" involvement, my eyes)
What Lynk said.
I've read that rheumatoid factor and postive cpc is considered to be a more severe form and has a poorer prognosis. I researched this pretty thoroughly because I was shocked when I was diagnosed and had rf of 312 and cpc of 30 something last year. I never even thought about RA before and didn't have a clue as to what it all meant so I had to do a lot of reading.
By the way, I am not implying that seronegative is not severe or damaging. I just know I was freaked by my numbers and that I already had erosions when I first landed at the rheumatologist.Definitely have the extra articular. That's where it's been the worse, especially the eyes and heart. The joint damage on the MRIs didn't start showing up until last year. But they never did films on the hands and feet before this week. It will be interesting if anything shows there. Okay, so I would be mild, as I never test, never have anything BUT joint involvement....right??For what it's worth, I'm a lurker who just typed a huge introduction, and lost it when I hit the wrong button. I Will redo that.
But here, I want to say that my interpretation of Deanna's Sero Negative Note is as my rm told me, and it seems to me that maybe this is what the ortho was saying? Food for thought anyway.
In a recent flare my sed rate was only 26 - ( I am sero-negative). I was amazed it was so low, I was really SORE everywhere - but he just grinned at me, shrugged his shoulders, and said " bloodwork does not always show the severity of what you are feeling or what is happening for you (yes - this IS a man) sorry guys - He said "What you tell me and describe to me is equally, if not more important and what helps me to make decisions about your care".
I'll be back!! You're a great team!!
i am so glad that you had a good report with the dr today. it is not often that we can find a dr who will take the time to talk to us and explain the procedures with us. i hope all goes really good for you. when will the surgeries take place. you will be in my prayers.I am seronegative and have been for years. I started a small flare in my foot on Christmas Eve morning. Now I can't move any toes. 2 days ago I woke up with a full on flare. Could barely walk...couldn't wash my own hair (my girls are awesome they did it for me) they helped me to dress. Hubby and girls have to open all my med bottles. ETC. My RD has said the same thing to me that Kiwilass's RD said to her. It's not only the bloodwork they look at, there are several other factors. Like swelling, range of motion, pain in the joints, fatigue level, stiffness in the morning, how many of your daily living activities can you do yourself or need help with. It is basically that Disease Assessment Sheet you fill out everytime you go for an appt. that they look at and up the numbers and divide them out for your score. Under 2.6 is remission.
Remission is possible. I have done it twice. I have had to stay on my meds to keep myself there, but at least I was there. Ever since the pneumonia and the viral syndrom back in Oct. and Nov., I have not achieved remission again. It is a battle I fight daily to get there and become somewhat of what I was when I was in remission. I will get there again one day.
Katie - like me, you still have JRA as an adult. I think it's safe to say, we're severe.
But really, what everybody else said, it's x-rays/bloodwork/patient experience/Rheumy's intuition etc. (and maybe a RA Magic Eight ball?
Lolo, my surgeries are Feb 22 and March 22. I am really excited to get them as it should improve my function and lower my pain significantly.
I've never filled out an assessment sheet at all, never had a mri, just had x-rays on hands and feet when I was diagnosed in Sept 05. I had a RF factor of 129. My dr said I had moderate to severe RA. I had pericarditis twice in the last 10 years, pleurisy and pneumonia countless times, sinusitis countless times, appendectemy (sp?), now I have a cyst on my tailbone. When I was young I was always sick with allergies, etc. I once had 3rd degree (like in A burn) poison ivy, creeping eruption. Any complications or weird stuff, I've had it.
It makes me wonder if I have had RA as a kids and no one ever diagnosed it.hmmmmmmmm
P.S. I know everyone is thinking what the h*** is creeping eruption. It's a tropical fungus that grows on trees. I used to live in FL as a child and go fishing alot. I would sit on dead logs to fish from and develeped a nasty rash that had all these schwiggly lines going down my legs. Which was a parasite burrowing in my skin. NICE!! My dad brought me to IL to see him for the summer and the doc's here were totally mistified. I dont know how many docs, nurses and med students cked me out that day.
That is really weird, Cindee. Truly creepy.that's why they call it creeping eruption
My friends & family can't believe all the weird stuff I get.
I, too, fill out an assessment sheet at every visit to my rheumy. I will be asking her when I see her February how she arrives at a decision as to severity. I'm still waiting for a definitive diagnosis. Last time I saw her (which was my second visit) she would only call it a sero-negative (for now), RA-like inflammatory arthritis.
Deanna, good luck on your surgeries and on your search for a new rheumy.
Hey Scout - I am confused about the cpc you mentioned. Is it the same thing as CCP or anti-CCP? Thanks, PatYeah, I just got it wrong.
I really didn't intend it all to be a "who has it worse" topic. I have just met people who tell me they too have RA, but they haven't been to the doctor, etc.
I do wonder if seronegative people have a rougher ride emotionally or mentally. I am actually GLAD I have labs to confirm because I think I'd be driving myself crazy with doubt and wondering and looking for proof. Even after 2 rheumatologists and my family doctor told me I ABSOLUTELY have RA I spent a long time looking for a loophole or believing that maybe test results were wrong or it would just go away if I pretended like I don't have anything. Seronegative would be difficult for me to believe, I think.
That is why I asked about the CCP - an internist recently told me that they are now able to diagnose RA in seronegative people with much more certainty if the CCP is elevated. Pat