New condition for me - very dry mouth

Yes.  Sometimes my eyes get itchy and seem dry as well, but then the opthalmologist a year ago said my eyes weren't producing enough tears.  

Other symptoms that may not be related.   Tiredness and feeling weak.   I am however 74 years old, so tend to think it is old age creeping on !     After an endoscopy 2 weeks ago, it showed I have 50 polyps in my stomach.   Waiting for results of a biopsy they took.

I am also underweight.   However, on a good day I have more energy.  I dance twice a week as well.  

Ah yes Angela. Maybe not what you want to hear but you have key symptoms of Sjogren's. Need to ask for a referral to a specialist. On the up side you can get treatment.

Hope you get something done now to ease your symptoms. Miserable conditiin if it is that but as I say...treatable. Take care and if you need to ask anything else frel free x

Hi Angela, I'm sending you a private message. PMs via this site don't expose the email address of either party or carry viruses so it will be safe to open.

Ah. I see I can't send a PM as you've blocked that function. I'll go ahead and take the risk of posting in this public forum then.

Yes, Sjogren's Syndrome (SS) is what I was thinking about, and it's what I have. However, it's worth noting that drying up of saliva and tears can also be normal symptoms of ageing.

The reason for wanting to keep this private was that I don't want to upset or offend anyone, which I've managed to do several times on this site's Sjogren's forum! The point about any forum on a specific condition is that it naturally tends to attract those who are worst affected. People with mild cases are less likely to bother with forums.

Most people with SS experience it as a minor inconvenience which needs careful management and a few lifestyle changes, but an unlucky minority are very badly affected. My symptoms have always been manageable and I'm aware that by simply saying this in an opening forum I could upset people who have the more severe version, who might wrongly think I'm accusing them of exaggerating their symptoms. Nothing could be further from the truth.

SS is a chronic condition for which there is no cure, only management. It's never fatal but can make life thoroughly miserable for those worst affected. Like other autoimmune conditions, it goes into partial or even complete remission in some sufferers - often for quite long periods. This has been true in my case, with a couple of periods of several years where I had very few symptoms. (It always comes back though!)

The fact that you've started getting symptoms relatively late in life is in itself a hopeful sign. SS doesn't always get worse over time (it hasn't in my case) but even when it does, the progress is usually quite slow. Some very unlucky people develop it in their 20s, and they're often the ones who are worst affected.

You can ask to be referred to a specialist to get a diagnosis. Rheumatologists usually oversee treatment of SS, but some people get referred to ophthalmologists, dependent on their symptoms. It would normally be a rheumatologist who would order the specific blood tests for SS - which, incidentally, are notorious for sometimes coming back negative even in people who have very severe symptoms! They can also order a biopsy of the cells inside the lower lip, but this procedure is not without risk of nerve damage and can also come back negative. I saw a rheumatologist just once, after my GP had found anti-salivary gland antibodies in my blood, but decided not to continue the relationship.

The reason for this was that I didn't want to take any of the medications on offer for SS. These are either DMARDs (disease-modifying antirheumatic drugs) or immunosuppressants, the latter basically being very small doses of chemotherapy drugs. These drugs can make life bearable for people who are seriously affected, but for some people the side-effects - not to mention the risk of damping down your protective immune system - are almost worse than the original condition. You need to bear in mind that it's not essential to take the drugs. It's not true that the disease will always spiral out of control if you don't take them. I'm living proof of that. If your symptoms start taking a turn for the worse at a later date, you can always start on the drugs then. Since there's no actual cure for SS, seeing a specialist is only really of value if you want to take the medications.

Regardless of whether this is SS or not, you're going to need to manage the dryness. As mentioned above, very careful dental hygiene and regular visits to the dentist are essential, as the lack of saliva can promote infections of the gums or other mouth tissues. For the same reason, you should cut back on sugar in all its forms, particularly sugary drinks (which includes fruit juices, even the natural ones). You can get over-the-counter eye-drops for the dry eyes, though you'll need to apply them several times a day. Some people find that using warm compresses on their eyes helps too, particularly first thing in the morning. And regular eye check-ups, even the ones at high-street ophthalmic opticians, will establish whether the dryness is causing any serious damage.

By all means post on this site's Sjogren's forum, where you'll receive a lot of useful management tips. But don't get spooked by the horror stories! These are told by people who really have experienced the horrors of severe SS, but remember they're not the majority, even if they appear to be on the forum.

I've had SS symptoms for 22 years, was diagnosed 12 year ago (which is about par for the course) and can honestly say I'm no worse now overall than I was at the outset. My symptoms tend to rotate over time. I started out with extreme mouth dryness, then this more or less cleared up, to be followed by peripheral neuropathy and dry eyes. The peripheral neuropathy (tingling and numbness in extremities) lasted about 10 years, but hardly bothers me now, ditto the dry eyes and mouth, though I have to use eyedrops and my mouth gets very dry in the night. That was followed by Raynaud's syndrome (white fingers) and assorted joint problems, both of which come and go. These days, pain in my muscles and tendons is the biggest problem, but is manageable with ice-packs and careful exercise. The latest "incarnation" of SS is mild asthma, for which I have to use a steroid inhaler, but this doesn't seem to be getting any worse. It also started attacking my thyroid about 10 years ago - another common problem - but that's easily solved by popping a harmless pill every morning.

Overall, I can say I'm in no worse health than anyone else of my age - and a lot better than some. I walk for about an hour-and-a-half four or five times a week and do a half-hour aerobics programme regularly at home, except in periods when the joint or tendon pain is too severe, when I have to cut back a bit. I also hold down a demanding voluntary job, which takes up 15-20 hours per week. But I really envy you being able to dance. I've always had two left feet!

Thank you for your message.  I did wonder myself if I could possibly have SS.   I am due to see my G.P. soon regarding my recend endoscopy findings, so will mention this to her.

I agree with all of what you say. Some people with these disorders hardly know they hVe them while others suffer all kinds of symptoms. I try to keep meds to a minimum. I don't have ss but have Behcets.

Don't expect too much when mentioning this to your GP, Angela! Just about everyone over on the SS forum has reported the same thing - average time for diagnosis is about 10 years. GPs tend not to know much about SS - or any other autoimmune condition for that matter - and even if they do know about it are reluctant to diagnose it.

For years my GP dismissed my dry mouth, dry eyes and peripheral neuropathy as being down to "old age", even though I was only about 50 at the time. My dentist wasn't interested either, even when I developed deep cracks at each corner of my mouth, that bled when I opened my mouth. And an ophthalmologist I saw for repeated attacks of conjunctivitis didn't even do the Schirmer's test for dry eyes!

I confess it took me several years to work it out for myself, as I trained in the 1960s, when we didn't learn much about autoimmune conditions. It was only when I managed to produce a spectacular attack of Raynaud's during a consultation with my GP (by pure serendipity) that she wrote me up for all the anti-inflammatory and antibody tests - but without telling me! I only noticed them when I read the blood request form she gave me. I asked the lab to send me a copy of the results (which we can do under our health service) and immediately spotted the raised antibodies. Still the GP didn't contact me about this. I waited six months then went back to see her. She clearly wasn't going to mention the results, so I casually asked her what they meant - acting all innocent. She said: "Oh yes, you have something called Sjogren's syndrome but it's nothing to worry about!"

I'm afraid I'm not the only one telling a similar story. It didn't really matter in my case, as my symptoms were relatively mild, I knew how to manage them myself and there was no way I was going to take medication anyway. But there are similar stories from people much more seriously affected, whose health was damaged by this kind of insouciance.

To be fair, I changed GP when I moved house three years ago, and the latest one is far more knowledgeable about, and interested in, autoimmune conditions in general. Interestingly, he's older than the previous one, who was only recently out of training. You'd somehow expect it to be the other way round...

Oh dear, Margaret, I just looked up Behcet's syndrome. I didn't know much about that one either, having only vaguely heard of it. It sounds really nasty - potentially much worse than SS.

Well my difficulty is I get mainly neuro symptoms and they are difficult to manage. But I was being very well managed for a long time til one of my meds just seems to have stopped working on me. Back to the drawing board!