Anti-CCP 900+ but Lupus rather than RA?

[Deb_Dragon]

Good evening all. I'm "on the verge" of being diagnosed with either Lupus or RA, but maybe neither...who knows 😕 I have lots of symptoms of both and my recent anti-CCP blood score was 900+ against a normal range of up to 20!

I discovered by accident a few years back that Prednisolone really helped my joint pain but a rheumatologist at the time diagnosed Fibromyalgia. My consultant this week could not confirm RA due to absence of swelling in joints, but I am still on low dose of Prednisolone as prescribed by my GP. I have to go back in two months for further assessment after coming off Prednisolone. She does however seem to be leaning towards a Lupus diagnosis.

I don't have the classic butterfly rash but I do get very flushed easily when warm or when I drink the slightest drop of alcohol, and develop a rash in direct sunlight, especially on my chest. I have fatigue, Raynaud's, a multi-nodular thyroid and many other symptoms of Lupus, although admittedly they also appear in other auto immune diseases. I have flares affecting my knees, my shoulders and my arms, including Carpal Tunnel Syndrome. I am also morbidly obese, so until the blood test results I have been fighting a bit of a losing battle with the medical profession!

So, to the point of this. Has anybody had such a significant Anti-CCP result and been told it wasn't RA as expected, but Lupus? I'd be interested to hear from anyone whose experiences are similar to mine so far. Thanks 😁

[Fennella02]

Hi Deb_Dragon

I'm so sorry your post has remained unanswered. I'm completely sero neg so probably I'm not going to be a great deal of help but I can testify to antibodies being only part of the overall picture. When I asked my rheumy nurse about possible RA overlap, she was quick to reassure me that the clinical and radiological picture is more valuable than the serological profile in RA diagnoses which illustrates the difficulty in picking these auto immune conditions apart. It occurs to me that you could have some sort of overlap of Lupus and RA etc? There is also Palindromic Rheumatism to be considered which causes joint swelling but leaves no erosive joint damage. Do you have any other blood markers or positive antibodies?

I'm sorry I'm being so useless but I didn't want your question to go unanswered.

Best wishes, Clare x

[panda2]

Hello Deb_Dragon,

I hope you're able to get the answers you need fairly soon.

Although... I have been in the process of diagnosis myself for over a year, as well it seems for many others on this forum it has also taken several years to achieve a diagnosis. It sounds like you've done lots of research and are very body aware. It could be they will give you an umbrella diagnosis of Undifferentiated connective tissue disease or RA until enough blood markers line up. Hopefully you would then be treated for your symptoms so there is some relief through the process. Many of the diagnoses actually require the same treatment, so as bizarre as it seems, the diagnosis is not so pressing as we feel it must be at the front end. I know the feeling -- I've been there.

As Clareb67 has pointed out, those blood markers and positive antibodies do help a lot in the direction things go.

All the best through the mire of it all.

Panda x