So this morning I saw the consultant. She confirmed all my joints were swollen and hot from my fingers to my toes. My bloods however are always normal except for the anti-ccp test. She told me I was classed as anti-ccp positive rheumatoid arthritis and that although my inflammatory markers are all normal one look at me shows I've got it. I eat dismissed previously by GPs because I showed no inflammatory reaction. It probably explains why when I was ill with other things people didn't do much but claim it was in my head.
Does anyone else have this type of RD
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Gretchy
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I am the same. I was lucky though as my GP referred me straight to rheumatology based on the anti CCP positive result. It is fairly common to have normal nflammatory markers but I think it is easier to monitor the disease activity if CRP or ESR are high to start with.
I feel for you! I have seronegative arthritis. For years I was dismissed as a neurotic. I do also have bipolar, but I'm not stupid or N attention seeker. In fact I try to stay as far away from docs as possible!
I wasn't listened to when I had a serious reaction to sulfasalazine either. I'm due to see GP this afternoon, and to be honest I feel like telling him to do one!
So sorry you are in pain, and haven't been listened to in the past.
I swapped GP's two years ago when I had a serious back problem they dismissed because my blood tests were negative. The GP I have now was great. He said you look ill and I believe you. It was him I saw in June because my thumb wouldn't bend. Again rather than prejudge me as the others had done. He did blood tests. As soon as he saw the slightly raised anti-ccp test he referred me to rheumatology. His colleague said it was unnecessary as I had nothing wrong. That from a GP who had set himself up as the practice joint specialist. I wrote a letter to the practice thanking my GP for being so proactive which he was able to show at his appraisal. The practice manager apparently moans he refers too many people!!!
I wish I could change practice, I can't because others refuse to take patients outside catchment.
I'm so glad you've found a doc who listens. I know GP's are under extreme pressure, but I'm afraid I have lost respect for mine.
I was given a med that was contraindicated with another med, when I questioned the doctor about it, she blamed me! Then I experienced a drug induced psychotic episode (sulfasalazine). I was probably more susceptible due to my bipolar. I rang surgery in a terrible state asking to speak to someone. I exlained that I thought the medication had triggered an episode to the secretary.
I got a phone call later from the secretary saying that the doctor had sent a prescription through to chemist. No phone call from GP!
I am similar, anti-CCP positive but with inflammatory markers that are sluggish to say the least. I did have a great rheumy & GP so they looked at the patient rather than the tests so the hot, swollen and tender joints told their own story when I was diagnosed.
Recently I moved GP & rheumy, which was all fine until I started to flare. Didn't have a rheumy appointment for months, so went to see GP who checked my ESR which had got up to 8. Which for me is high, but GP considered it normal as round here under 30 is normal. If I had an ESR of 30 I would be completely immobile! So I went home and drew up a spreadsheet of my ESR readings over last 6 years and took it back to her to show that 8 is not normal for me. Which worked.... the reason for telling you my story is to remind you to keep a record of your blood tests and so on. One day you may need to convince another doctor.
But anyway, sorry you've joined our club but at least now you can concentrate on getting it under control and getting your life back.
Apologies for interrupting but can I ask helixhelix if your CRP remains normal even when your ESR is raised? This is what happens to me and seems poorly recognised. It was only yesterday that the nurse taking my blood told me that ESR was a a waste of time as the CRP reveals far more. I was able to educate her! Thanks. Clare
That's a good idea though I never get my results, they sit on the computer at the doctor. All they tell me is they are fine.
Nettyc I know your pain. I had a severe back problem that gave me severe bladder issues and intense pain. I went for some bloods and the nurse said you look very ill I'm not happy. She rang down to the doctor. He refused to see me. She put the phone down and called him a w**ker. He then referred me to a health psychologist as clearly I had health anxieties. I was seen and she was furious. She wrote back to the GP telling him I was clearly ill and why could he not see this. I was put on tramadol at one point. I said it made me feel strange and paranoid. He said I was making it up. But guess what, on the box....can cause paranoia.
My current GPS have been amazingly supportive but I know someone who is under a different consultant at the hospital and her treatment is totally different to mine. Scary that even in the same hospital it can differ so much
You are entitled to get print outs of your blood tests - so ask. I think you need to get a bit more pushy so that you can question and challenge your doctors more (in the politest possible way). And keep records of what you've tried and what happened. You don't have to become a complete RA nerd like me, but the more you understand the better able you'll be to debate your treatment.
I didn't know that. Just checked and mine are 0.05 and are always near the bottom of the normal range. (Probably why I have never felt the need to look up what they were!) But my sister recently had a very high reading (while being checked for something unrelated), and was having to go back for a retest as the GP couldn't understand what it meant. She's not been diagnosed with RD (just fibro), but has more symptoms than I do.
Hi my anti coco has always been higher. My rf comes and goes I get both done when I got for my rituximab infusion. My ester and Crp are always normal. I can feel the heat in my joints and they get a bit swollen but not a huge amount. A lot of my bloods you expect to be high are low and visa versa. Rheumy is very good so understands different results mean different things. RA is a non-standard disease so I figure I have my own unique version. Good luck with everything and hope the new treatment works.
Oh I no this, two years I cryed with joint pain , nothing showing in blood work .. just awful finally rf factor showed up and could be treated..no success with ra meds Im allergic to something . Any answers from all of you . It be appreciated..
Maybe I have latent asthma too (if there is such thing!). It hasn't been something I have ever experienced, but NSAIDs cause a wheeze deep inside my lung and I have been told categorically that I must not take them. My GP was supposed to arrange tests for "drug induced asthma", but it hasn't happened.
Actually, I have just spoken to my sister about her eosinophils, and she never went back for her retest. She says she doesn't intend to take DMARDs, so doesn't want a diagnosis of RD, despite knowing how serious this is. When her symptoms started (very suddenly) I suspect her blood didn't show anything specific, so she was misdiagnosed with fibro.
My understanding is that a lot of the auto-immune diseases are linked by a common cause - inflammation. It just depends which tissues are affected. RD is my first, and I'm dreading any more appearing.
I try not to focus too much on what the labs consider to be "normal". When my CRP is above 2, I have lots of pain and inflammation. My new rheumatologist doesn't know me well so he focuses on what the labs say is normal, but I know how I feel. Pay attention to your lab results - write them down and keep track of how you are feeling at the time of the tests. Good luck!
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Sero Positive (high CCP) but ESRand CRP are normal. How do I know if the meds are working?
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The continuing debate about CRP and ESR, my experience...so far.
