Sjogren's

[oregonpachey]

Does anyone here have it? You can PM me if more comfortable. 

I have an appointment with a rheumatologist soon and I am pretty sure that is what my diagnosis will be. 

If this is it, I will be thrilled to have a dx for all my bizarre medical ailments that people seem to think I am faking. 

[pierogigirl]

I do. I have weird, painful rashes and a dry mouth, but not some of the other symptoms. I also have Renauds. Unfortunately, with Sjogren's they can't seem to rule out some of the other scary autoimmune disorders.

[k3am]

DS has it. It leads to a lot of bloody noses and dry eyes for him, relatively benign. For him, it’s just a matter of lots of aquaphor/saline/humidifier use and doesn’t need any other interventions.

Good luck figuring out an issue to your weird symptoms.. unfortunately for us, it was an incidental finding and not the cause of all of DS’s weird symptoms.

[oregonpachey]

Nov 3, 2024 18:55:15 GMT -5 pierogigirl said:

I do. I have weird, painful rashes and a dry mouth, but not some of the other symptoms. I also have Renauds. Unfortunately, with Sjogren's they can't seem to rule out some of the other scary autoimmune disorders.

I have weird rashes, especially below my lip line. My eyelids also get dry and massively itchy. I have some joint pain, nothing severe and pretty frequent fatigue. The biggest annoyance is cold uticaria. If I'm outside for even five minutes, I get hives all over my face, neck and arms. I have also started getting lumps in my salivary glands. 

[pierogigirl]

Nov 3, 2024 19:12:11 GMT -5 oregonpachey said:

Nov 3, 2024 18:55:15 GMT -5 pierogigirl said:

I do. I have weird, painful rashes and a dry mouth, but not some of the other symptoms. I also have Renauds. Unfortunately, with Sjogren's they can't seem to rule out some of the other scary autoimmune disorders.

I have weird rashes, especially below my lip line. My eyelids also get dry and massively itchy. I have some joint pain, nothing severe and pretty frequent fatigue. The biggest annoyance is cold uticaria. If I'm outside for even five minutes, I get hives all over my face, neck and arms. I have also started getting lumps in my salivary glands. 

I am also super tired most of the time. A long time ago I had a ranula (pseudocyst of the salivary gland) surgically removed. It's a pretty rare thing. I wonder if it's all related.

[cap]

I was diagnosed with it or Mixed Connective Tissue Disease. My rheum didn’t want to call it one way or another because one of my blood tests came back very weakly positive for a lupus anticoagulant, so that’s not completely off the table yet. I was diagnosed with dry eye disease by my optometrist a couple of years ago. I started hydroxychloroquine about three months ago and it does seem to be helping with the joint pain and severe cold sensitivity I was having, and maybe a little with dry eye and dry mouth symptoms. I don’t think my rheum would have prescribed it if I could take ibuprofen (can’t because I also have ulcerative colitis) or prednisone (can’t because it gives my arrhythmia).

My rheum said that at this point, it's OK to not have an exact diagnosis since treatment is all the same at this point. If I develop more severe or different symptoms, my diagnosis might change.

[abs]

I have it along with a host of other AI diseases. It makes a ton of sense and explains why I could never do contact lenses! The worst symptoms for me are the itchy ears and fatigue. The fatigue just goes along with AI diseases though. Feel free to ask any questions!

[sadlebred]

Nov 3, 2024 19:39:53 GMT -5 cap said:

I was diagnosed with it or Mixed Connective Tissue Disease. My rheum didn’t want to call it one way or another because one of my blood tests came back very weakly positive for a lupus anticoagulant, so that’s not completely off the table yet. I was diagnosed with dry eye disease by my optometrist a couple of years ago. I started hydroxychloroquine about three months ago and it does seem to be helping with the joint pain and severe cold sensitivity I was having, and maybe a little with dry eye and dry mouth symptoms. I don’t think my rheum would have prescribed it if I could take ibuprofen (can’t because I also have ulcerative colitis) or prednisone (can’t because it gives my arrhythmia).

My rheum said that at this point, it's OK to not have an exact diagnosis since treatment is all the same at this point. If I develop more severe or different symptoms, my diagnosis might change.

I'd highly recommend another test for lupus anticoagulant if it's Antiphospholipid syndrome (APS) they are testing for. One test is not a diagnosis. It required multiple tests over a 12 month period. I have APS.

[cap]

Nov 3, 2024 22:39:50 GMT -5 sadlebred said:

Nov 3, 2024 19:39:53 GMT -5 cap said:

I was diagnosed with it or Mixed Connective Tissue Disease. My rheum didn’t want to call it one way or another because one of my blood tests came back very weakly positive for a lupus anticoagulant, so that’s not completely off the table yet. I was diagnosed with dry eye disease by my optometrist a couple of years ago. I started hydroxychloroquine about three months ago and it does seem to be helping with the joint pain and severe cold sensitivity I was having, and maybe a little with dry eye and dry mouth symptoms. I don’t think my rheum would have prescribed it if I could take ibuprofen (can’t because I also have ulcerative colitis) or prednisone (can’t because it gives my arrhythmia).

My rheum said that at this point, it's OK to not have an exact diagnosis since treatment is all the same at this point. If I develop more severe or different symptoms, my diagnosis might change.

I'd highly recommend another test for lupus anticoagulant if it's Antiphospholipid syndrome (APS) they are testing for. One test is not a diagnosis. It required multiple tests over a 12 month period. I have APS.

Yeah, I’ve had that one done and those were ok. It was a different one that was weakly positive but I’d have to look it up to see which one. My rheum also has me taking a baby aspirin because of it. I also neglected to say that I had a PE in July 2023, but I was on oral BC at the time.

[dancingnancy]

Among other things. I take hydroxychloroquine and sometimes have joint pain and bouts of exhaustion, but so far no dry eye or mouth.