Hi, I am 29 and diagnosed with Sjogren's a week ago. I just wondered what happens now? I had blood tests and x-rays at my appointment with my consultant last week and have another appointment to see him in 4 months time but i'm not really sure what happens between now and then or for the future?
How often will i have to see my consultant, what tests i will have, do i need to see my GP?
It's all a bit overwhelming
Any advice would be much appreciated.
The best thing to do is not worry about it too much, kym. Sjogren's, like all autoimmune diseases, is a condition that seems to "feed" on attention and anxiety. It's not life-threatening, though some of the symptoms can make you feel pretty uncomfortable. The majority of people who suffer from it never even get diagnosed - they just struggle on because doctors don't recognise it. I finally got diagnosed 20 years ago, after ten years of suffering from a ragbag of apparently unrelated symptoms that I couldn't get doctors and dentists interested in.
The tests you'll have will depend on how diligent your various doctors are (and at least you got to see a consultant!) but none of them are very strenuous. Treatment is usually symptomatic - eye drops for dry eyes, mouthwashes for dry mouth etc. There's no cure but it doesn't really progress either and you can get very long spontaneous remissions. In a few cases it can even disappear altogether! I've been almost completely symptom-free for five years now, after 15 years of all kinds of unpleasant afflictions. And I'm 70!
One note of caution, on the subject of age. It's extremely unusual (though by no means impossible) for Sjogren's to start at your age. The average age of onset (which was true in my case) is around 50, the vast majority of sufferers being women. So don't hesitate to bring this up when you see the consultant, to make sure it really is Sjogren's and not something else that might be effectively treated.
Other than that - don't worry too much!
Thanks for your response and advice Lily. I am glad you are feeling better at the moment
We're pretty sure it is Sjogren's as my mum also has it along with a million other things!! although she wasnt diagnosed until about 5 years ago.
I am going to just take each day at a time and not worry about all the tests and things that are to be part of my life now.
Hi Kim, I have sjogrens for a long time but I was diagnosed just 2 years ago. The test that my GP send me to do was ESR,ANA, SSA-RO SSB-LA they are antibodies to determine if you have Sjogrens.
After my positive results I was put on meds to stop the disease from progressing.
I am feeling much better now before the meds I could not swallow my mouth and eyes were so dry and glare from lights and sun was very painful .
When you see your GP make sure he puts you on meds you are going to feel much better. And don't stress too much on it it is not fatal we can live with it just have to keep it under control.
You are not alone!
I see my GP every 3 months now for routine checks .
So don't stress it will make you feel worst .
Keep in touch!