Hi :)
I went to our local Dental Hospital this morning for an ultrasound on my salivary glands. The radiologist was very pleasant and informative and apparently specialises in Sjogren's. I'd been referred there by the new rheumy I am wondering whether to stick with or not.
Apparently my glands are not in too bad shape which is good news. He said they look a 'little tired' and there are signs of fibrosis but they could be ever so much worse. The little nodule picked up in the MRI scan a while ago is still there in one parotid gland but doesn't seem to have grown. He said rampant SjS would look different so I asked how so? He said to imagine a block of flats that had been bombarded with heavy gunfire so there were holes all obver it. Apparently that's what saliva glands look like once they are badly affected by SjS. I don't think they will bother to attempt a lip biopsy because I don't think they could see enough wrong.
I did ask him if I'd been wrongly dxd for all these years but he said not at all. My mouth and eyes are dry - its just a very slow progression and Plaquenil has helped. I'm just one of the lucky ones. He said that sometimes people could have a really bad onset of symptoms and then they could level off for years and others could just go downhill and others again could be only very slightly bothered.
Take care - Scottie :)
Very interesting! I didn't know they could US salivary glands.
I'm glad yours are not more severely damaged.
Thank you for helping me understand things a little better.
So glad to hear they are not worse. I do hope plaquenil helps slow it down for all of us here. Thanks for the info. Take Care.
susanep :)