The problem with anti ccp

I'm a bit hacked off with the doctors right now.

Diehards will probably know my story but I was diagnosed with probable early RA just over a year ago despite protesting at every visit to the rheumy and GP that I don't feel like I've got RA. And please could someone just look at my feet. Despite constant perfect inflammatory markers, I was convicted on the basis of a positive anti ccp result, and so every time I told them that the drugs were doing nothing and that my feet hurt, they would tell me that it was because I had inflammation in my feet, and that the reason why I still had inflammation in my feet was because I wasn't on a high enough dose of methotrexate, so I had to increase it. They told me that I must have been in constant "flare" for the past year and that was why my feet hurt all day every day. They told me that the fact that my inflammatory markers were always perfect meant nothing, because many people's inflammatory markers don't rise in response to inflammation (which always left me wondering why they were considered to be such reliable indicators). They constantly took this line because of my positive anti ccp, and never would accept any suggestion by me that I might be one of 2-3% of people who have positive anti ccp but no RA.

Anyway, I finally managed to persuade them to look at my foot this time. Instead of attacking the anti ccp issue, I suggested that maybe there were two things wrong with me. Yesterday, the radiographer found one Mortons neuroma in one foot, two Mortons neuroma in the other foot, no sign of RA inflammation or damage whatsoever in either foot, but the possibility of bunions developing on my two big toes which he says I need an x Ray for.

I'm pretty hacked off actually. This is the same pain I have always experienced, and so the pain I have felt for a year which they have always said was RA, was in fact mechanical neurological damage which might not have become so bad if they had looked at my feet a year ago. They relied too much on the anti ccp results. I know I'm not out of the woods yet with regard to the RA diagnosis, purely because of the anti ccp result, but I wish they had given me more thorough care from the beginning. For flips sake, I even started off in the private system so you couldn't even excuse it for lack of NHS funding st the beginning (but I did soon shoot across to the NHS with my tail between my legs when my private health cover ran out, very quickly).

If what they tell you doesn't feel right, keep fighting. They aren't the know all seers.

8 Replies

  • As I also have a collection of Morton's neuromas and bursae in both my feet, which we've known about for years, I shall be very interested to hear what happens next in your story. I have had no specific treatment....we just watch them grow and shake our heads and hope that something will happen to make them get better.......and in my case they are now saying they can't tell whether they are Morton's neuromas or bursae, they look the same on USS.....but if bursae they might get better if the Biologics work....if we can find one that I can tolerate....meanwhile my feet burn, and are numb, and give me grief most of the time, I have erosions and bunions too.

    Wishing you all the best!

  • Thanks Matilda. I'll post progress. I know reading other people's experience of Mortons neuroma on this forum has helped me so hopefully mine can help others in the future.....

  • Isn't it crazy that Titchyj has been trying to get docs to focus on her having RA, and finally succeeded, at the same time you've been trying to get them to focus on you having something other than RA! But at least you've succeeded, so I hope this is the start of a better treatment/relationship with your doctors.

  • I know. Crazy. I'll keep fighting until I see irrefutable evidence. :-) for now, it's one nil to me.

  • Grrrrrr - I feel your frustration! I don't know why they ignore feet so much. I took my shoes off once to make rheumy nurse exam my feet. She brought a consultant in when she saw how swollen underneath my toes where and I got a referral to orthotics and podiatry.

    Well done for your persistence, I hope you have some relief soon.

    J xXx

  • Just shows how you have to keep faith with your own instincts doesn't it. So frustrating when docs don't listen. Feet have been my worst and first symptom but when I mention it at the clinic they 'umm' and look at my fingers. :-s

    Hope you're a bit closer to getting some relief now xxx

  • Ooh, didn't notice your post was months ago when I replied...hope you're a bit further along with things now. xx

  • Thanks Mrs bones - feet are a lot better now. Had the neuromas injected in Jan and they are 90% better now !!!

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