Overwhelmed...

[~elizabeth~]

I'm just feeling overwhelmed by the enormity of this condition. My mouth dryness has got progressively worse over the last couple of weeks, and the oral burning has at times been unbearable, despite ongoing treatment with different antifungals. I haven't been able to sleep for ages, the various unpleasant mouth sensations keep waking me up. I haven't found much relief from the pilocarpine, and it is difficult to get an appropriate flow. The quality of saliva doesn't seem good enough to make any difference to the oral symptoms.

I've just found a number of small cavities in my incisor teeth/first premolar, and my teeth are so sensitive it's even uncomfortable to drink. I've hardly been able to eat since this flare started in September, I'm only managing one small supper-time meal of soft, bland food, and the weight is falling off me.  Reading dental literature, it seems that it's impossible to prevent dental problems with dry mouth, however good your hygiene regime.    

I called my consultant this morning, who said to get anaemia/thyroid levels checked, as these can both lead to issues that increase oral dryness. But unless there is a treatment that can fundamentally improve natural saliva function, I can't see any way of facing the future with this terrible oral pain and discomfort.

[Joe S.]

See your dentist and try some Biotene. I found that as I got the cavities taken care of and used the biotene some of my dry mouth disappeared. I also sip water all day to keep my mouth moist. Do what you can to help yourself feel better. It is often the little things that seem to do the most.

[wallaby]

Sorry to hear about your mouth troubles.  I was only recently diagnosed and started taking salagen 2 weeks ago.  It helps, but not for long and not enough.  I am hoping it will get more effective as I keep taking it.  Like you, the weight is dropping off me.  I am rarely hungry as I am usually full of water etc.  And if I am hungry, nothing sounds good to my dry mouth or it takes so much water to swallow that I am full too soon.  I have a friend who swears that using co-enzyme Q10 helped prevent her getting cavities.  I have also seen here on the forums that people recommend boost/ensure for those days when you can't eat but still need nutrition.  I hope you get some relief soon.

[ohiolady]

Elizabeth,

I could have written your post when I was first diagnosed with Sjogrens.  I can't remember if you can get Evoxac or not but it works much better for me than the Salagen.  Don't give up hope.  I have improved in so many ways since my diagnosis. 

Anna

[genko_b]

So sorry you are struggling right now.

Evoxac works much better for me than the Salagen/pilocarpine did.

The dentist put me on prescription toothpaste which addresses both the sensitivity and the cavities - Colgate Prevident 5000. I rinse with Biotene, which is great. Sipping water (not big gulps, just sips) really helps too.

It is overwhelming at first, but if you keep at it, trying different things until you find what helps you, you will find a way to manage it all.

Genko

[~elizabeth~]

Thanks, sometimes it all gets too much, especially when you're losing so much sleep.

I spoke to my rheumatologist earlier, she suggested getting anaemia checked again, and also thyroid levels checked, as both of these can have an effect on the degree of oral dryness (amazingly we managed to bully the GP/nurse into doing them at short notice this afternoon).

I had to give up on the Biotene gel, as it was making the sensitivity much worse.    I don't know what's going on with the pilocarpine, I wonder if it's just reflecting wide day-to-day fluctuations in underlying saliva. After a few days of using it with no side effects, I suddenly get  bad headaches/labyrinthitis-like dizzyness, which then goes away if I stop it for a day or two.

I don't know what to do about the holes, I've seen the dentist 3 times recently and they surely must have noticed them? I'm supposed to be seeing the hygienist to have any scale removed then a fluoride varnish applied, but I've always found her very rough, and I've read that you need to be very careful about damaging the enamel if you're at high risk from dry mouth. I'm using fluoride 2800ppm toothpaste, but from what I've read I think 5000 ppm would be more effective at stopping the rot, as well as remineralising exposed root dentine?

[ErinG]

Hi Elizabeth,

I use 5000ppm fluoride toothpaste (Colgate's Prevident 5000 for dry mouth).  I have noticed that most of my tooth sensitivity has gone away since starting to use this toothpaste. 

[~elizabeth~]

Thanks Erin, it's reassuring to know that.

[irish]

I started getting so many cavities in late 70's and it just got worse and worse. Finally ended up having a lot of root canals and abscesses and then one-two teeth removed. Had a lot of sensitivity and nothing helped plus I had a dentist who did not pay attention to the situation other than to say that my teeth were bad.

I ended up losing more teeth and getting a cheap partial as I knew I would lose all my teeth sooner than later. Finally had them pulled in a couple separate sessions in 2003 and 2004 and it was the best thing I ever did. Turned out that they all had lousy looking roots that did not show up on x-ray. It took some months but the sensitivity finally went away. Dentures are really not that bad. You just adjust to it and I can even eat corn on the cob. Caramel doesn't go so good.

No more dentist appt/bills/infections/cavities, etc and something one can live witih. Does take longer to get ready in the morning though!! Irish

[~elizabeth~]

That's exactly what I'm afraid of.    My generation (I'm 43) was brought up to worship at the altar of perfect teeth; years of orthodontistry, parental paranoia about the slightest problem, and long-established daily hygiene routines make it really, really difficult to accept that my teeth are on a one-way trip to the dentist's bin however well I look after them. The expectation that you can keep your teeth in reasonable condition almost indefinitely with good hygiene was probably a hugely unrealistic one, but a delusion that's difficult to shake off overnight. 

My dentists keep reassuring me that, because my oral hygiene is excellent, I have nothing to worry about but quite honestly I don't think they know enough about the condition to be sure about that (even though they are better-than-average ones, and seem keen to be kept informed about the condition by rheumatology).

I think constant oral pain/discomfort and the fear of losing my teeth are my biggest worry at the moment. My parents both struggled with awful dental problems for years, and my mother is finding dentures very uncomfortable and difficult. I think ongoing dental problems are a huge quality of life issue.

[Scottietottie]

Hi 

I think you should be really grateful that you've had beautiful teeth for so many years. I even had to have my baby teeth pulled. Every secondary tooth in my mouth was filled at least once, if not twice by the time I was 14.  I remember going to a new dentist when I was 21 and he blasphemed when I opened my mouth because it was such a mess.

Did I brush regulary? Yes. Apparently I effecrively brushed some of the enamel away trying for 'nice teeth'. Did I eat a lot of sweets. No I did not. In fact the year most of my teeth fell to bits was a year when I wasn't eating sweets at all because I had a ?5 bet on with my mother that I couldn't do without them for a year. I won.

Was it where I lived? No. Nothing wrong with my brother or sister's teeth.

I've been teased about my teeth and bullied about my teeth and would dearly have loved to have had them all taken out many years ago. I couldn't get a dentist who would agree to do it. I finally have pretty well all of my upper teeth crowned now. I also have a dentist who will pull teeth on request as he believes they really have caused me enough pain now.

It's amazing how good false teeth can look now anyway.

Take care - Scottie 

[DragonflyC]

I second all the recommendations that you look into getting a prescription for Evoxac.  It doesn't solve any problems, but it can be a huge help.