GCA/crowned dens

[christine2715]

My ESR is up to 86 and CRP 74.4. Most of my problems are around my sinus problems, my neck has a strange crackling sound when I turn it and is stiff and sore and I have face pain, sore under my tongue and headaches and weakness most of the time. I went back to 30g Pred and have rested a lot but most of the time I feel awful like I have really bad flu and bad sinus but I havn't got a sinus infection my GP says, just totally blocked sinus'. It's so hard to know how much is GCA and how much Predisilone. I read about crowned dens which can seem like GCA and cause misdiagnosis and asked rheumy about this and he hadn't heard of it but looked it up and said might be possible. Read about crowned dens in Kate Gilbert's book. Now rheumy is sending me for a head and neck CT and after that maybe he will see if Prof Dasgupta might take me on re the new drug trial. Not sure what the CT might show. He is a new rheumy and after two appointments still hasn't looked at my scans, not even the PET scan hitch gave my GCA diagnosis. Feeling better today, first good day in ages but I am so very fed up with the lack of resolution and worried I have now been on high dose Pred for 5 months.

[HeronNS]

Sounds like you are on quite a journey. I had never heard of this disorder, either. It's caused by calcium deposits. It might be interesting to investigate how and why this happens in case it's something you can help prevent from occurring in the future. Calcium can get deposited in the wrong places if there is a lack of some of the other things we need to efficiently use calcium, like magnesium and vitamin K2. I wonder if anything like that has been going on? I really don't know, just asking questions. I'd be fascinated to hear more if you learn anything. I do hope you get some relief of these symptoms soon. It's so disheartening to feel unwell and not be getting the help you need, but perhaps things are about to change for the better. All the best.