32 replies to this topic

[chockers]

Hi Folks

I have a ball of infection on my gum, does not hurt much it used to go away but now its there most of time. Been to dentist and its just a matter of calling them. I can have a root filling which might not work. It's a 3 rooted tooth. He recommended removal. Then I find out can't have the gaps filled. So if I have it out which really I need to, I will be left with 2 teeth in my whole mouth, that meet to chew on. I can't have any bridges, I think it's because of risk of infection because he has no where to clip the false ones on to, top lip is tight. I guess I would have to seek other ways.

So meanwhile I have just had a barium swallow as food is getting stuck (only sometimes). I guess now if I have tooth out it will be down to using the blender.

So has anyone else had the same problem? It's not quite a problem yet but I guess it will be, I would guess I need the tooth out. As I have just left it (gums not good).

Any ideas please, I did find out about Eastman hospital but am I bad enough to go there?

Christine

[Amanda Thorpe]

Hello Christine

Google UCL Eastman Dental Institute and have a look at their website. My husband has had a lot of dental problems over the years and is still dealing with some now, it's no fun that's for sure!

Take care.

[Joelf]

Hi Christine,

Sorry to hear that you're having such a problem with your teeth.

I have had a few extractions in the past but nowadays I tend to try and hang onto my teeth for as long as possible!

[night owl]

I have always been advised to hang on to my own teeth as long as possible but its not that easy.

With the lack of saliva due to Sjogrens most of my teeth have been crowned but I do have a gap or two perhaps four or five, even more anyway my dentist did say I could have implants but not sure if this would help with chewing. This option of implants I have declined so far.

It’s just the thought and the cost.

A dentist who specialises in dental care for people with Scleroderma and Sjogrens would be good and covered by the NHS.

[Liz Holloway]

Hi Christine

My dentist referred me to the maxillo-facial dept of the local hospital where I saw a consultant in restorative dentistry. The general advice was to hang on to my few remaining teeth as long as possible. Implants are not an option. He did recommend a "soft splint" to be worn at night on the lower teeth. It is very comfortable and seems to be effective at keeping those teeth in a good position. I see my dentist every 3 months and use a high fluoride toothpaste and mouthwash.

I do sympathise with this problem and hope you find a satisfactory answer.

All best wishes
Liz

[Joelf]

Well, a warm welcome and hello to you, Liz!! You meet the nicest people on these forums!!

Teeth can be an absolute pain in more ways than one and having Scleroderma does seem to exacerbate the problem.

Hoping you're keeping well and I'm looking forward to hearing more from you.

Best wishes,

[chockers]

Well I've not rung the Dentist yet as that means an appointment. Yes, I also have a dry mouth Sjogren's and use a high fluoride toothpaste and mouth wash . The reason my teeth are going fast. Cost wise as I live on benefits I would be better to have it out .

But at moment hanging on as filling the gaps is a problem. I don't want to be out to lunch with a blender haha.
I know old folks eat with no teeth; I might be able to as well. Possible root filling.... I wonder now if I have kept the tooth too long? The only option will be have it out .

I might go elsewhere to look at other options of filling these gaps as my Dentist of 30 years is not happy in doing it and I think as I live with it my top lip is tight though have not a small mouth as such, but wonder if there's changes to come?

But haha will likely be gappy for our Holidays next year......that will be fun!
I think with food getting stuck if the tooth comes out it will have to be the blender and soft food haha

Maybe I can go to the Eastman Dental Institute?

love Christine.

[Amanda Thorpe]

Hello Liz

Welcome to the forums! Are your dental problems due more to Sjogren's or scleroderma or a bit of both? I have scleroderma but no Sjogren's and so far no dental issues. Well I am going to the dentist this week for a crown to be fitted to a tooth that met its demise opening a bottle top, I was using my mouth to open the bottle rather than my hands because of sclerodactyly so I guess scleroderma's still to blame!

Take care.

[Joelf]

Amanda, you did what!!

Goodness me, my dentist would have an absolute fit if I opened a bottle with my teeth!!

It must be so difficult to open things with sclerodactyly hands, but even so, your teeth...........!!

Hope you get on okay with your crown.

[Lynnie]

Hi Christine,

I can sympathise with the issue you're having. I too have had a tooth extracted this year and fillings at the back from 'crumbling' enamel....no fun, that's for sure.

If this was me having this issue from my point of view I would say right there's only 1 thing for it have the teeth out and go for a plate or dentures!

Eating blended food or soft uninviting slops for the rest of my days just would not be an option plus I would stop smiling....not an option!

I would take every step to facially look as nice as I could and being a person with sunken cheeks and no teeth would be a personal nightmare.

Good luck with what ever you decide chris but do whatever you have to to stay windswept and exotic
Hugs
Lynn

[Shelley Ensz]

Amanda, we can totally forgive your opening a bottle with your teeth IF you happened to catch it on video for our Scleroderma Dental Involvement series.

I am sure sclerodactyly hands could get you into even more trouble than a lost tooth here or there. It must be very frustrating, at every turn, to not be able to quickly and easily do what you are used to doing by yourself.

Christine, good luck figuring out what to do. I have lost many teeth plus have many crowns, a partial that seems to be more complete than partial as time goes on, and so forth.

However dentists do put up an awful fight to save every last little bit of tooth, don't they? And I have one friend who never adjusted to her false teeth and really regrets having the rest of hers pulled, but I have other friends and relatives who have gotten on very well with their set of false teeth, so I would guess the outcome can range anywhere from horrible to total success, depending on your situation and your dentist, as well.

[Amanda Thorpe]

Well no crown as I couldn't get out of bed to get there! Shame eh? Maybe next time I'll actually go through with it, the fact that I hate dentists has no bearing on anything I'm sure!

Take care.

[judyt]

Hi Everybody who has posted on this subject,

Part of Christine's problem, as she probably knows already, is that with Sjogrens a full plate is not really an option. When you have such a dry mouth apparently the plate won't stay in place!! As well, our gums are already under stress from the lack of saliva and all in all it adds up to having to try to keep every tooth we can. That's what my dentist told me anyway and I will carry on believing him.

I have implants and I am very very happy with them. There were a couple of very minor hiccups during the settling in process but after that they have been great. In fact I think I have 19 crowns, 2 natural teeth, 2 implants and a number of gaps and I find I can eat everything I want to. Just have to be sure to keep them healthy now and they should last the distance.

Good luck at the dentist when you get there Amanda!!

Best wishes

JudyT

[judyt]

Hi again Christine,

I have just been reading over these posts, and started to wonder if it would be much better for you to approach the hospital and get another and possibly more up to date opinion.

Here in NZ our health system is more like the British one and people on benefits who have major dental problems can get hospital care. I think it is quite important that you get further advice because once all your teeth are gone, there is no going back and thinking about it again.

I wonder if you are allowing the Dentist's cautionary spiel to hold too much sway. When I had the implants I got the whole bit about how it could go wrong and what were the options if it did go wrong etc. etc. but in the end everything is fine.

I tend to think that nutrition for us is more of a concern than for some others because we have the esophagael dismotility going on at the same time, and if you are anything like me, there are lots of foods that are not suitable because they are too spicy, or too acidic or too something else. So without some chewing equipment things in that department might get a bit tricky.

Really hoping you are able to sort something out.

Best wishes

JudyT

[Amanda Thorpe]

Christine, did you look at the website for UCL Eastman Dental Institute and contact them?

[Liz Holloway]

Hi Amanda
Sorry for delay in reply. 3 granddaughters staying put me out of action for a while!
I think both Sjogren's & Scleroderma are the problem. There is bone & tissue loss hence the difficulty with implants, & the Sjogren's means dentures would probably not work. Nobody will come clean about the future so I understand Christine's fear of just gums!
Can't cope with the idea you opened a bottle with your TEETH!! Don't know whether to be impressed or horrified!
Good luck when you finally get the crown sorted.
Liz

[Amanda Thorpe]

Hello Liz

You seem to have a double whammy, mind you scleroderma does like to bring friends along for the ride!

I saw the photo from the West Sussex local group meeting with you, hubby and grandchildren in it...awww!!

Take care.

[chockers]

Well having a root filling is out because dentist can not get my top of mouth up or open enough to do it .So he will look again in a few days when I go for a filling but infection is there most of time so I will have to have it out as really can't go on with it.

Christine

[Amanda Thorpe]

Hello Christine

Sorry you are having dental troubles and hope they can do something for you on your next visit.

Take care.

[jefa]

Just want to offer my experience on the topic: All of my teeth were removed. The decision was made because of severe erosion of the enamel and the interior of the teeth were crumbly making restoration impossible. I originally thought the erosion was from acid reflux but my rheumatologist said that Sjogrens was more likely the culprit as the dryness creates perfect conditions for the destruction of the enamel. They placed full dentures at the time of extraction, but these were more or less temporary as the mouth can change drastically after everything settles down and the underlying structures heal and find their form. Once this happened, I was able to get properly fitting dentures which look really great. I can eat some things with the dentures in and it is a slow process - certainly good for my diet! For the most part, however, I take them out when I eat and pop them back in after I have rinsed my mouth. It is amazing what you can actually eat without teeth. The idea of everything blended into pap is certainly not a necessity. Of course there are some things that are difficult or impossible to manage. The things I miss most are crunchy raw fruits and vegetables. I can east salad made with the softer young leaves and the firmer lettuce shredded fine. I can't eat nuts, tough meat, hard biscuits (unless they can be dunked) and hard breads. I can eat some crisps (I find I only want one or two, mostly for the flavour. I can handle a bit of toffee with a cup of coffee. Biting is an issue, but I have learned to cut things into bite sized pieces. My husband and I (he had his out at the same time) make our sandwiches and cut them into sixteen pieces with a few good whacks of the knife and invert them onto the plate from the cutting board. It looks posh! I find myself tearing bits of cake or bread off with my thumb and forefinger or cutting up my food on the plate before I start eating. In other words, you adapt. Unfortunately, because of the dryness, leaving the dentures in for a long time can be uncomfortable. With or without the teeth, I suck on sugarless mints throughout the day which helps keep up the moisture. The artificial sweetener in them can cause diarrhea, but as some of the drugs I take cause constipation, it balances out quite nicely. If I had it to do again, I might have considered having a few strategic implants on the lower jaw as an anchor for the bottom plate, but I don't know whether the bone structure would have supported it.