PA and Sjogren’s

[Lhood08]

I posted a few days ago about dry mouth and eyes, but since then my early sjogrens bloodwork has come back positive. I am terrified! Is there anyone else who has AIG/PA and also sjogrens? I feel desperately in need of some hope and guidance…in particular I’m wondering if injections have helped with SS symptoms at all. Thanks

[Rexz]

Hi Lhood08I too have PA/AIG, Hash, and Sjogren's. This is called Polyglandular Autoimmune Syndrome type III. My Sjogren's so far anyway has manifested as a chronic dry cough when it flares. As far as I'm aware B12 injections won't help Sjogren's Syndrome. Drunk plenty of water there are eye drops for the dry eye which I don't need yet. Also there are some Sjogren's support groups you may want to join.

Best wishes, Rexz

[Lhood08 in reply to Rexz]

Ah, you have it all too! I had no idea that this trifecta had a name. SS probably scares me the most out of the three because the symptoms are just so persistent so far. And the sjogrens groups seem to be the most terrifying and gloomy of them all. I am hoping they will prescribe me something helpful. ❤️

[Jillymo]

I have Sjogrens.

I cant say I have seen much of a change in the Sjogrens symptoms since being on B12 injections.

I am prescribed Hydroxychloroquine which decreases the activity of the immune system. I am also under Ophthalmology for my dry eyes and prescribed eye gel and drops. It is important to keep the eyes moist. I also use a heated eye mask which helps.

I get very dry skin and scalp so need to keep well moisturised. When suffering a flare up the lethargy is chronic to the point I am unable to do anything. I find even the heat from taking a shower exhausts me.

I was prescribed a mouth spray for my dry mouth but found XliMelts lozengers help me more at night with the dry mouth. The cheapest place I have found them was on the sleep clinic site on line.

For more advice there is a Sjogrens forum on here - Click on my hub at the top of the page and scroll down .

Keep positive and try not to worry it's just another string to our bow. 😘

[Rexz in reply to Jillymo]

And what wonderful music we play! 🎻🎶

[Jillymo in reply to Rexz]

Oh dont we just ! 🎷 🎶 🎵