Odontoid peg: I've had RA and lupus for five years now... - NRAS

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Odontoid peg

JenniferW profile image
11 Replies

I've had RA and lupus for five years now. At the last rheumy appointment they sent me for x-rays and included my neck because I reported it has been making horrible grinding noises some of the time.

The results arrived today saying there are erosive changes involving the odontoid peg. I looked it up and it's a bone in the neck which is nonload bearing (wikipedia says) and erosion can happen due to RA and lupus according to various radiography sites.

Has anyone else had this? Will it cause problems later on? And is there anything I can do to reduce damage like exercises?

Thanks a lot

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JenniferW profile image
JenniferW
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11 Replies
helixhelix profile image
helixhelix

Poof, I just wrote a long reply and it's vanished! I will try again later....but basically yes I have it too.

Oh, I get this and I put it down to my Osteoporosis. Better mention it at my next Rheumy appointment.

helixhelix profile image
helixhelix

Ok....second attempt. I had a scan of my neck that showed erosion of the odontoid peg/alantoaxial joint. My rheumy immediately switched me onto biologics as in her view erosion of this joint is bad news, and to be avoided at all costs. It is a very important joint, but it is high up and doesn't move in the same way others do so doesn't really click and grind.

I also get grinding in the neck itself, but the scan showed that was due to other herniated discs in my neck and various things getting squished together. So I got pins & needles in my hands. But the physio sorted that out. All that was straightforward wear and tear arthritis.

A while back someone posted a link about an exercise you can do for the odontoid peg and alanto-axial joint, to try to release tension in the neck. It was to try to move the top of your head in tiny, tiny circles whilst keeping everything else completely still. This teacher said it could take years to work out how to do it, and I tried a few times but lost patience! I'll see if I can find it. However once something's eroded it's eroded...so all you can do is try to stop it getting worse.

Please talk to your rheumy about this, and ask about how best to ensure it doesn't erode further. As you really don't want that.

JenniferW profile image
JenniferW in reply tohelixhelix

Thank you very much for this information, it's very helpful. I was put on biologics a couple of years ago as my RA is severe and this is the first x-ray of my neck, so I will keep my fingers crossed that the damage is from earlier.

I'll give the rheumatology phone line a call and ask them for advice.

JenniferW profile image
JenniferW

I went to a chiropracter before I got diagnosed with lupus/RA actually :) Because I kept pulling muscles... But she was very good about checking for existing problems and said she restricted what she did on older people. I'll see what the rheumatology dept says and ask about seeing a physiotherapist. Thanks for your help

helixhelix profile image
helixhelix

This is the video....m.youtube.com/watch?v=HoP0l...

JenniferW profile image
JenniferW in reply tohelixhelix

Thank you, that looks very interesting, I sort of understanding what he's saying, but I think it's the sort of thing you have to try and listen to the explanation a few times. Like learning a new sports technique.

Hezekiah profile image
Hezekiah in reply tohelixhelix

Interesting video -I've watched it and will certainly try to get the hang of doing it, as it could be relaxing once you get the hang of it. Thanks for the link, much appreciated.

Hezekiah profile image
Hezekiah

Hi Jennifer, you don't often see the odontoid peg mentioned.

I fractured mine in a car smash about 44 years ago, but I reckon it must have been a hairline fracture, because I survived it without any real bad effects. They stuck me in hospital in a neck brace and told me not to move. I was there 4-6 weeks in all. Anyways not really relevant to your post, but I needed to vent.....

JenniferW profile image
JenniferW in reply toHezekiah

Gosh, a neck brace for several weeks! That sounds awful. I shall definitely do something about mine.

Hezekiah profile image
Hezekiah in reply toJenniferW

It was a long time ago, and all I can remember is being extremely grateful that the damage was not worse than it was. Wearing a brace for a while seemed a small price compared with the other potential options which could have very significantly affected the rest of my life. Nowadays, apart from occasional stiffness, I have no problems with it.

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