I have had RA since 2016. I was on Gollimumab for the last 9 months. I have had a dry mouth and eyes for a few years now but since January this year it has got progressively worse. By March it was intolerable with ulcers, a smooth tongue, loss of taste, unable to eat normal foods only soft diet and difficulty swallowing foods unless I drank at the same time. Then comes the jaw pain and inflammation from my left jaw line to my chin with toothache like pain in both upper and lower teeth and major sensitivity with my teeth which breathing in cold air would cause pain. My
My GP’s are good and have given me lots of gels, pastilles etc to help relieve the symptoms and they did test for Sjorgren’s and other bloods which came back negative, but they wont do any investigations they are leaving it to the Rheumatologists. I also have seen the dentist on numerous occasions.
The Rheumatology dept. has stopped my Gollimumab two months ago because it hadn’t worked sufficiently in nine months and to see if it had any bearing on the dryness. They also gave me a three week dose of oral steroids and referred me to maxfax and for a ultrasound scan. (Still waiting for these appointments)
At present, some of my symptoms have improved ie, not so much pain in my jaw as I don’t chew on that side because it hurts, I keep to softer foods, I try to eat at the front of my mouth but will need to take the ibrufen otherwise I get the jaw pain just not as bad as before. The dryness has not decreased but the ulceration has improved. I’m up through the night drinking and consequently the loo, I have to drink every couple of minutes if I am sitting quiet but if I walk or talk I have to coat my mouth every 30 seconds. Sometimes I just don’t want to drink and my mouth will just stick together and I’ll get an ulcer. My mouth seems to loose a layer of skin in the mornings. I have splits at each side of my mouth which extends inside when I eat and they wont heal. My throat goes dry too.
I next see the Rheumatologist end of June but I am seeing my GP for a yearly review this Thursday.
I haven’t worked since April, I’m unable to do my job (scrub nurse). Time is moving on and I’m desperate to get back to work. Do I sit tight and wait for all the tests and see if they come up with something that can help me or do I try and change my job to one where I don’t have to go without fluids for a few hours at a time.
I’d love to know if anyone has had the same experience and what their outcome was.
