The Mudcat Café TM
Thread #142631 Message #3524388
Posted By: VirginiaTam
09-Jun-13 - 06:05 AM
Thread Name: Jane's Rainbow: for all needing support & comfort
Subject: RE: Jane's Rainbow: for all needing support & comfort
Thanks to all for good wishes and my best thoughts out to those in need and even those not in need. Condolences to those in grief.
Only 4 days off of the hydroxychloroquine (anti malarial, taken to control Sjogren's) and now waking several times a night feeling like my eyes have shards of glass glued to them and that my mouth and throat have been rubbed dry with cotton and steel wool. Salivary gland spasms are most uncomfortable, excruciating jaw pain. I drink a litre+ of water from late evening to morning. Sjogrens does terible damage to gums and teeth too so lots of toothbrushing, flossing, and mouthwashing going on to protect.
I am less likely to go blind now the drug has been removed. Though I am a bit worried about what the auto-immune exocrine disablement will do to heart, lungs and other vital organs. Joint pain and brain fog ain't much fun either.
I still have not made decision as to whether I will partake of the anti-TNF, but I do know which one it will be if I do. The monthly self inject, Golmumab seems the simplest. They all pretty much do the same thing and carry the same risks.
GP appt on Wednesday next to talk about this and some other problems which may or may not impinge on my decision.