I have gum disease from scleroderma as this happened to any other patients ??

[annmarie72]

[Anteater]

Yes, it most definately has - it is advisable to visit the dentist every 6 months and your hygienist every 3 - 6 months depending on the severity of the disease this should help prevent sore gums and ulcers. SO pleased to hear this from someone else.

Oh, I also have Lichen Planus and Sjorgens Syndrome which does not help.

[annmarie72 in reply to Anteater]

i keep getting abscesses i didnt no it would affect my gums no doctor advised me of it but when i went to my dentist he told me it is probably threw the sclero and couldnt treat me i have to go the dental hospital and he thinks my teeth will have to come out even though there fine its my gums am so upset over it as i love my teeth.

[thamilton in reply to annmarie72]

Hi, I see that you originally posted this 6 years ago. I am experiencing something similar now. I was wondering how did it turn out for you?

[Anteater]

I was unaware it affected the gums till I started getting lots of problems (very sore and painful gums. I attend a Dental Hospital in London Kings Cross but most of my treatment is via my dentist and a brilliant Hygienist. Ask if you can see a Periodontist at the dental hospital. I think mine will have to come out eventually as my gums are receeding fast due to the Scleroderma, I already have one denture right in the top front, dont like it at all and as soon as I get home I remove it. Because I have the Lichen Planus which affects the oral cavity (white patches) and gums the consultant prescribed me Cutivate cream which is a steroid to use on my gums at least once a month or more if required but at first I had to use it every night. The main thing, I think, is to see a Periodontist to see how bad your gums are and then try adequate cleaning techniques before you let them take your teeth out., Im no expert but its worth a try and stick to your guns......

[annmarie72 in reply to Anteater]

sorry i am unaware of a hygienest who and what r they i have been dyagnosed with scleroderma for a yr and a half i also have a rare blood disorder but no 1 as told me anythink aout my teeth all i get is we need to check ur heart and lungs nothink about gums or teeth i hate this disease and i no nothink about it

[Hidden]

Hi annmarie72

I havn't got scleroderma but can sympathise with the not knowing alot about a disease. I would truly recommend ringing or emailing the RSA directly (if you havn't done so already) as they are really helpful and they really listen to you and try to help when possible. Failing that I'm sure lots of people are happy to listen to the frustration of others and try to help. I'm going to suggest area meet-ups next in the blog!

All the best

Tom

[annmarie72]

That would be great. I am in the unknown with this disease and every time I see my sclero doctor all i get is more medication and more lung and heart scans. I know their trying to help but they're never direct with anything.

[Anteater]

Annemarie, The dental hygienist is someone that assesses the patients oral hygiene in other words they assess the condition and state of the gums that help identify problems and in turn implement a treatment plan for the patients needs and help get the gums into a more healthy state. They will also ask you about your medical history which gived them an understanding as to why your gums are in a bad condition!!!!

As with the Lung Function and Heart tests, these are normal for Scleroderma patients and we all have them - They are done so if problems start in these areas they can treat straight away with Medication etc.

Annemarie, you can phone or look at the RSA website or there is plenty of information on the internet. I was diagnosed wih Scleroderma in 1992 but know now that the symtoms were there long before. You will learn more as you go along and you must ask questions. Good luck and take care ...

[annmarie72 in reply to Anteater]

thankyou for your help its great to no people live longer than i was told and there r people like me in the uk ....

[Hidden]

I was having lots of problems with my teeth ( gum disease) a long while ago and my dentist had no idea why. I had not then been diagnosed with sclero'. She referred me to Guys dental department and I was told I was not brushing enough. I was doing everything possible. Some operators there were very curt and made me feel inadequate. I often mean to write to Guys and tell them about the effects,of Crest syndrome on the gums. My actual teeth ar good too. It is the gums that are receding. I recently had all the lower teeth out as I was on so much pain and I know the top set will follow suit at some point in the not too distant future. I am devastated as I had nice teeth and I did and still do as much as possible to maintain a healthy mouth. I use corsodyl daily and a small interdental brush plus an electric toothbrush. 3 times every day. What more can one do! Shame isn't it.this is a terrible disease but we have no choice but to do our best with each and everything it confronts us with. Best wishes to all .

[graygirl1]

Yes indeed! I was told by my dentist that my dental problems are as a result of my overall autoimmune condition of which Raynaud's and Scleroderma are just two of my symptoms. The bones in the mouth and the gums do recede and bleed and teeth become shakey and sensitive.

The problem is that having the amount of care needed to keep on top of the problems is very expensive. Seeing the Hygienist is not available under the NHS and costs between £40-£50 a session. It is not easy to afford if on benefits.

My dentist always stress how crucial it is for me to see the hygienist every three months but it is not possible and no matter how hard I try the attention I pay to oral care is just not enough.

I think the majority of R & S sufferers have this problem. If at all possible, see the Hygienist as often as you can and floss and brush well and use a good mouthwash at least twice a day and before going to sleep. If you do not have mouthwash, warm salt water is just as good. I prefer the salt water as I find the strong mouthwashes interfere with the taste buds and ruin the taste of food and drink.

Good luck!

Graygirl1