Hi fozheart! Sorry to hear you've got sjogren's. I've got some survival tips for you
Sjogren's does cause decreased mucus production in the intestines and as a result a kind of IBS-C type thing. A lot of people with sjogren's are on things like miralax. In our case though, where there is inflammation in the bowel (I'm assuming you have crohn's/UC or something!) then it's probably a totally different story and to be honest doctors don't know enough to comment. To be gross, I know I produce a loooot of mucus and I am never, ever constipated - I have the other problem! So I don't think it's a given that because you have sjogren's you're more likely to get problems, I would ask your doctor to be sure though.
I know you said financially it's not an option to see a rheumatologist but I would not underestimate the help a rheumatologist can give you. I always say they are the most caring, helpful and empathetic doctors you will ever meet and they really want to help you. My rheumatologist has been treating my IBD because my gastro is not interested at all! How messed up is that! There are also complications that can come with sjogren's that only a rheumatologist can monitor and it's so important - the biggest being lymphoma. 5% of sjogren's sufferers will develop lymphoma. I've been diagnosed for 4 years or so and I've had 2 cancer scans already. I see my rheumatologist twice a year to check up on sjogren's alone. So I would seriously consider getting one on board if you can!
As for dry mouth, as someone with sjogren's and also a dentist which has probably totally given away my anonymity I can tell you that 15 years is not a bad life for veneers at all. It probably has nothing to do with sjogren's and dry mouth that it fell out unless it is decayed underneath but you would be able to see that. Eventually that cement is going to fail and I would say you had a good run. If you still have the veneer it may be able to be cemented back in.
Saliva is really protective of teeth and when you don't have a lot it makes you prone to decay (there is conflicting evidence that sjogren's causes gum disease, personally I don't think it does) so I would be getting on a good fluoride toothpaste and mouthwash. Biotene do a range of products for dry mouth (there's production problems in the UK but I don't know about where you are) including a toothpaste that's gentle on the skin in your mouth. I find when I use regular toothpaste it's too nippy and the skin in my mouth sloughs off. It's so gross! You can also use sprays and gels to moisturise the mouth and make it more comfortable. I use BioXtra spray because it's quick and handy for me to use when I'm cycling. But it's trial and error. I can't say any of the products are fantastic and sometimes just sipping water is better. BE CAREFUL though doctors (and dentists!) do NOT know that most saliva substitutes are acidic because most people with dry mouth are older and have no teeth, make sure you do not use something like glandosane or salivix pastilles as I'm assuming you still have natural teeth! Biotene is neutral and I would say the best. It's not inevitable you will lose your teeth if you take care of them, you just have to be more careful than you would normally.
Eyedrops are a lot better than artificial saliva. I use carbomer eyedrops but they have preservatives so if you have to use them a lot you might want to switch to preservative free ones (they won't prescribe them for me on the NHS here!)
You mentioned hydroxychloroquine - when I was taking this I became very unwell and ended up in hospital for 3 weeks due to weight loss and ongoing severe pain. I read in a book about IBD (can't remember which one) that people with IBD struggle to tolerate antimalarials. Again, something not a lot of doctors are going to know so be aware. Some people find it helpful, it didn't help me one bit. When I was taken off hydroxychloroquine my gut symptoms improved.
One of the gastros I've seen said right away that sjogren's can cause a 'dry pancreas', after all it's a secreting gland like the eyes and mouth. I'm on pancreatic enzymes and I noticed a huge difference after I started taking them. It might be worth asking about.
One last thing - I would urge you not to go on sjogren's forums. By all means ask me a million questions but do not go on sjogren's forums! I don't know if it's the demographic of people that are normally affected (I was diagnosed very young which is unusual) but... I don't know how to put this nicely... The way they go on you would think they had a life threatening illness. Sjogren's SUCKS but it shouldn't disable you at all, unless you get a complication. The people on those forums all seem to relish being ill and are constantly posting about how sjogren's is similar to MS and trying to prove to each other how terrible it is when the reality is it is seriously rare to be more than inconvenienced unless you get a complication. The people on this forum are amazing, they have a great attitude in the face of a horrible illness but the attitude on sjogren's forum is about the most depressing thing I have ever seen.
My GI and rheumatologist argued with each other for a good year about whether sjogren's was causing my gut problems (now thought to be IBD, it was an easy way to pass the buck for my gastro) and eventually my rheumatologist said we just do not see people who are disabled by sjogren's, it is so unusual.
Sorry I have totally rambled!
