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Dee L

Oral Specialists

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Hi Jo

 

So pleased that all went well and healing nicely.

 

I am now waiting to see someone at Southampton General Hospital on the 12th November for a pre-op assessment to see if I am suitable for extraction (originally two teeth needing extracting).  In the meantime I have now discovered a hole in a tooth on the opposite side and now have three loose teeth on the bottom which I am clinging onto for dear life ha ha.  Perhaps I should start looking through the glossy magazines for a super-duper full set of falsies to replace them all at the time of my extraction.  I wonder what toast is like dipped in tea ha ha.

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Hi Dee,

 

Thanks for your good wishes.

 

I do hope that your pre-op assessment is successful and you are able to have your extractions sorted with no problems. Although horrified at first at the prospect of false teeth, I'm now coming round to the idea and actually can't wait for my dentist to get stuck in and do the necessary crown and fitting for my small plate. I'm afraid toast is an absolute no-no at the moment as is eating on the left side of my mouth; unfortunately there is a time lapse between extraction and the fitting of the dental plate, to allow the gum to settle down.

 

Maybe I'll lose weight?.....I wish!! ;)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

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ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hello Sue

 

I am glad you are getting good treatment and have a dentist who can help address the ravages of scleroderma and associated diseases.

 

Hello Dee

 

Whatever you do don't look at magazines! All you'll see is people with ridiculously, impossibly, unnaturally white teeth, as if they have been painted on! Even if you watch television the celebrities have bizarrely white and totally FAKE teeth!

 

Hello Jo

 

Sorry my dear I had no idea you were having dental issues. You are right, gums shrink so there has to be a period of rest between extraction and plate/denture and then they have to be replaced, again as the gums continue to shrink, giving you your final set.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

I have a sister who is 23 years old and diagnosed with Systemic Scleroderma when 15 y old and she is struggling with her loss of teeth for the last 3 years and she is under the care of Guy's hospital but we are running out of options.

 

She is very demoralised by her look and if they cannot help her, it is going to be a disaster.

 

I am sorry but I thought I would speak about it because she would never write about her issues on a forum. She lives with me at home and we have been fighting for few years now. I am trying my best, but I feel low sometimes specially now the disease is getting more visible and affecting her teeth.

 

She reacted to Mofetil-immunosuppressant- and she is on no therapy for now apart from her Raynaud's Phenomenon tablets and omeprazole.

 

She was at in Guy's hospital today and came back very upset because they don't even think she can have bridges or dentures and an implant seems out of question on such an inflamed gum. 

 

Hard to take all of this, but we keep going!!

 

Thanks for listening.

 

Amine

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Hi Amine,

 

Welcome to these forums to you and your sister.

 

I'm very sorry to hear of the dental problems your sister is experiencing; it's bad enough to lose teeth at any age, but it must be extremely upsetting for such a young person.

 

We have a medical page on Dental Involvement which I hope you'll find helpful and informative. 

 

I've not been referred to Eastman Dental hospital myself, but some of our members have been there with satisfactory results; perhaps it may be possible for your sister to be referred there? They do seem to have a lot of experience with Scleroderma patients and perhaps they may be able to offer your sister some help and advice.

 

Now that you've found our forums, please do post again and let us know your sister is getting on.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Amine,

 

As Jo has said, welcome to the forums and we hope you keep in touch here because there is an enormous amount of very good information available.

 

Systemic Sclerosis has more far reaching effects than just the Dental problems which are cropping up at the moment and I think it is important for you to help your sister to get good advice and maybe a second opinion from another Specialist.

 

I understand that she doesn't feel able to come online herself so it is just as well you have done so.   I have had Scleroderma since at least 22 years of age and maybe earlier and I can well remember how I felt then and I didn't have any visible signs and no diagnosis either.   I would have been absolutely mortified if I had faced what your sister has to cope with.

 

Keep up the good work and good luck with finding more help for her.

Judyt

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Hello Amine

Welcome to the forum and thank you for being such a wonderful support for your sister. I would agree with Judy in that your sister needs to surround herself with a medical team that specialises in scleroderma. Being surrounded by doctors in the know makes you feel less helpless and more able to cope with the demands this disease places on the body. I would also recommend she gets a referral from her dentist to the Eastman Dental clinic who specialise in all types of dental issues and as already said other members of this forum have been referred there themselves.

You may also wish to consider having your sister referred to a scleroderma expert and there are a number of them in the UK, in particular the Royal Free London. Although your sister's main symptom may be dental, scleroderma is a progressive disease and she will lose nothing being under the care of an expert. In addition mycophenolate is only 1 of the immunosuppressants available and if your sister could not tolerate this drug there are others that could have been offered.

The idea is to dampen down the immune system and prevent scleroderma from doing as much damage to the body as possible, you don't need to be seriously ill to start immunosuppressant therapy, the hope is that it will prevent you from becoming seriously ill. Of course there is no guarantee it will do anything of the sort.

Your sister may also wish to consider some type of counselling, having a rare, incurable, debilitating illness is unsurprisingly a life changing experience, for the person with the disease and their nearest and dearest. I have had bereavement counselling myself and I think I had already had scleroderma some 5 years at that time. Some things you feel immediately and others creep up on you with the passing of time. If you browse the forums you will find many other discussions about the emotional impact of scleroderma and counselling. Although it's not for everyone you would be amazed the difference just talking to another person makes and it is something that we can do to help ourselves, we may not be able to stop the disease from ravaging our bodies but we can certainly do something to keep our emotional life in balance.

take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I have also had a lot of dental problems. In 2010 I had all of my teeth removed and have dentures; they are not gleaming white, they matched my tooth color and I got to pick what color I wanted. That was cool! No tea with my toast. Once I got used to them eating is easier than it used to be with many missing teeth. I use a dental adhesive on my bottom teeth but my uppers are fine; the only problem is right after I eat I have to clean my dentures or it starts burning under my upper plate. I have also eaten caramels; they are very sticky but the adhesive helps.

 

Good luck with yours; I hope you have a good experience 

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Hi Quiltfairy,

 

Having had my plate with three false teeth on it for the past 6 months, I must say that I'm absolutely chuffed to bits with them! :)  Like you, my dentist matched the colour of my remaining  teeth and once in place, even I can't remember which are original teeth, crowns or dentures. ^_^  I don't need to use any adhesive with them; there's a rather natty little arrangement whereby two of my crowns have small hooks on them and the plate slides seamlessly onto them, is held in place by them and fits snugly in my mouth.

 

I wouldn't dare risk eating caramels, though; I think you're rather brave to attempt that and my dentist would have a fit if she thought I expected my plate and teeth to withstand sticky sweets like that.....nougat is an absolute no-no as well!! ;)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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My dentures are a full plate so I have nothing to put clips around. I have noticed though that since my diagnosis of scleroderma that my lower jaw is getting smaller, so I need to go in and get them adjusted; I think maybe the bone is being absorbed and I will have to talk to her about what to do about it as I was still pretty healthy when I had my teeth extracted.

 

I make homemade caramels for the holiday season every year and I under cook them a little so they are a little less chewy. I just cannot resist the temptation.

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Hello Quiltfairy

 

I have started to have dental problems because of scleroderma, dry mouth. An incompetent dentist didn't help! It's very frustrating because it's another thing we have to take on the chin, or jaw, from scleroderma. Having always had perfect teeth it's somewhat galling.

 

I am glad you are pleased with your dentures and still able to eat. My husband has them and complains about not being able to taste food? Do you find this?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Yes, I did find it affected my taste at first but it has come back. I have had my dentures since 2010; my only problem as of late they are not fitting as good as they used to, so I need to go to my dentist and get them adjusted so they fit once again. It seems my lower jaw bone is getting smaller, so the dentures go down too far.

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Thanks quiltfairy! Can they adjust the denture or do they have to make you another bottom set/another top and bottom set?

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I don't know about the bottoms, but I am sure that they will have to make a new top as my mouth is getting smaller, as this is one of the things we put up with Scleroderma and the top is getting quite tight and starting to cause some pain from pressure. The false teeth are much better than the pain I was having all the time, also a tooth would periodically fall out.

 

At that time I did not know I had scleroderma, but the sclero doctor thinks I have had it for about ten years so that may have been why it was happening.

 

I have started using Biotene moisturizing mouth spray for the dry mouth; it is really helping with the dry mouth and I like using it right before I go to sleep. My mouth does not get as dry at night.

 

I have also heard about implants; I am going to ask my dentist about them. With the implants there are no dentures they are just like real teeth; I have a friend that has them and he loves them. He said they were much better than his plates, but I don't know if my insurance will cover them.

 

Good luck on whatever you decide and please let me know. 

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Hi Quitfairy,

 

Sometimes there can be a problem with implants, as some of the medication taken for Scleroderma (ie Alendronic Acid) can cause the jawbone to crumble and therefore implants are not a viable option. Your dentist could probably advise you.

 

In the UK implants are extremely expensive; I have a friend who paid an absolute fortune for about four or five teeth and the procedure for fitting them wasn't that pleasant, either. However, like your friend, mine is very happy with them now they're all in place and she's recovered from the shock of the final bill. ;)

 

Of course, if your insurance will pay for them then that alleviates one problem! ^_^


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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