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#21 judyt

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Posted 16 April 2014 - 02:03 AM

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



#22 Amanda Thorpe

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Posted 22 April 2014 - 10:03 AM

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.


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#23 quiltfairy

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Posted 06 November 2014 - 12:38 AM

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 



#24 Joelf

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Posted 06 November 2014 - 04:11 AM

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!! ;)

 

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#25 quiltfairy

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Posted 08 November 2014 - 09:36 PM

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.



#26 Amanda Thorpe

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Posted 11 November 2014 - 02:48 AM

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.


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#27 quiltfairy

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Posted 12 November 2014 - 05:24 AM

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.



#28 Amanda Thorpe

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Posted 15 November 2014 - 02:29 PM

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

 

Take care.


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#29 quiltfairy

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Posted 16 November 2014 - 11:57 PM

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. 



#30 Joelf

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Posted 17 November 2014 - 02:20 AM

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! ^_^


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#31 Shelley Ensz

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Posted 28 November 2014 - 08:15 AM

Hi Amine,

 

I am sorry your sister is having so many dental problems due to scleroderma. I have had a ton of dental problems including gum diseases and many teeth lost. Several times I've had to go without my partial for weeks on end, waiting for gum inflammation or mouth sores to settle down.  I do know how embarrassing it is -- especially since I am missing nearly all of my upper teeth.

 

I've found that stressing out about it doesn't help, either, because stress increases inflammation. So I joke about it a lot, like calling myself the Toothless Wonder of the Western World.  Of course, it's okay if *I* call myself names, but not so much if others do.

 

With scleroderma, I have personally shied away entirely from bridges or implants. It is much more practical -- and a zillion times cheaper!! -- to get partials and dentures. I love my partial because they can just keep adding teeth to it as need be. And your sister will likely be a fine candidate for a partial when the gums settle down.

 

Meanwhile she should of course make every effort to eliminate anything that might be worsening the inflammation, and remember to also suspect toothpaste and mouth washes.  The more "natural" the better right now, if the dentist approves, such as baking soda for toothpaste and light salt water rinses instead of mouthwash because the slightest thing can make a bad situation worse or prevent the natural course of healing.

 

On the positive side, gums tend to heal very quickly, given the opportunity. So try to reassure her that she is not alone, and that you know someone who has happily braved the public jeers as the Toothless Wonder of the Western World, and that overall, people are quite kind and understanding, especially if you remember to give the world a great big, toothless grin!  Its the frowns or pouting or tears over it that people really don't like.

 

One of the greeters at our local restaurant has fully half his teeth missing -- and has for years -- yet he still smiles as broad as the grand canyon, to the delight of virtually everyone.

 

Keep us posted on how your sister is getting on, will you?  And don't give up hope. Her gums are very likely to improve, and she will totally love her new partials when the time comes.  And, I still often have to go without my partial due to mouth sores, only popping them in to talk on the phone or make a public foray, or to let a pulled tooth heal. It helps to use the "bad hair day" attitude. None of us always look perfect, and often we are even at our most lovable when we look our worst, because we are more human and down to earth then.

 

I'm sending some extra warm hugs for you and your sister.

 

:emoticons-group-hug:


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