Panicky patient!!

Hi. I was diagnosed from blood tests 5 years ago, at the age of 70. After reading up, I realised it answered a lot of questions. Why my teeth weren't great, fibromyalgia, IBS... But SS is different in everyone and dry eyes can be caused by all sorts of other things. If your diagnosis is positive, the BSSA is very helpful and I joined them. (British Sjorgrens Syndrome Association). Also a very readable short book,

Living with Sjorgrens Syndrome by Sue Dyson, is my Bible.

Hi Sallyann

Chronic itchiness/hives sucks, and I'm fortunate enough that mine doesn't meet the definition of CIU.

If there's a connection between smoking and autoimmune disease no one ever told me, not back when I was smoking and not since I quit finally 9 years ago. But I'm no doctor so who knows? For sure though it is always good to quit smoking. Lung associations have lots of good info on that, and most docs are ready to write scrips if you need them & cheer you on. I have lung disease from my smoking (& right now have terrible pneumonia) and wish I'd quit sooner. If you can channel your worry into research on quit smoking methods the time may pass more easily even if it takes you a long time to decide to quit?

I don't think they did the lip biopsies when I was diagnosed 20+ yrs ago. They sound awful to me, too.

That really does not sound like SS but who knows.  Unfortunately, I am a smoker also, just cannot seem to quit with all the stress in my life.  I have many symptoms, been dealing with IBS for some time, chriponicchronicchronic dry mouth and throat and now small fiber neuropathy. Blood tests and biopsies are negative fir SS but my Rheumatologist thinks I have it. Mant tests and doctors over the yea s and no answers.  I have had a lip and parotid gland biopsy.  ENT doctors did mine.  Numbed my lip and took a small biopsy. Very short procedure, however, that was a few years ago and my lip is still numb in that area. I was told that would last 4-6 weeks.  Other then that, it wasn't that bad and i have a  low pain threshold.

Hi Sallyann

I had the lip biopsy about 10 years ago, not for diagnosis as that was done on blood tests 20 years previously, but to determine my level of inflammation to see if I was a candidate for strong medication (I wasn't).  Don't be frightened of the lip biopsy; it wasn't a big deal.  As for the rash - I might be right off the mark here but this is just a thought.  I have had rashes all my life (I am now 71) and before I knew I had Sjogren's which started when I was 25 but wasn't diagnosed for 15 years.  As a result I looked for other causes for the rashes.  I eventually realised that I react to tomatoes (and nothing else) with a sort of discoid eczyma.  More significantly, I develop hives and rashes from salicylates and sulphites.  Salicylates are present in many plant foods, while sulphites are used in food processing and as preservatives (220-228) (and in some antibiotics also).  I will have hives/rashes if I eat any kind of berry (strawberries the worst), all stone fruit, honey, cinnamon, molasses/brown sugar/treacle/golden syrup, caramel (often present in unexpected things), all dried fruits ... the list goes on.  Thus your rash could be unrelated to any autoimmune disease, not that I would wish a salicyate/sulphite intolerance on anybody.  There are Internet sites that give extensive information on these intolerances.  I hope this may be of some help to you.

Cheers, Maureen

I just think the rash is related to auto immune disease. I get it with Behcet's...not the same as Sjogren's but very similar. I understand that some people may have reactions to certain foods and think you should explore that. But I have been symptom free for 3 years with really good meds and the urticaria went. I also think that some people with Sjogren's may not have a huge range of symptoms. Like Brhcet's ot takes all sorts of different forms and affects prople differently. Goid luck. X

Do not be afraid. it is not true that your antibodies are bad because you are a smoker. i had sjogreen syndrome for 12 years. It is hard to deal with some syntoms but that is life.