Sjogrens - Tooth Loss, Gum Disease

[Crystal68]

Hello, I'm new to this and hoping someone can help. I have Sjogrens and a couple of other autoimmune conditions. I experienced a dramatic deterioration with teeth and gums 2 years ago, dentist advised I would lose all my teeth within 6 months and because of the lack of saliva I could not get dentures, because of the deterioration to the gum and bone I could not get implants. So this means I will have no teeth and no replacement option! I was traumatised and have managed the issue through diet and some complementary therapies. But the constant pain and deterioration is a major issue affecting all parts of my life.

Has anyone else experienced/come across this degree of deterioration with no options provided? My GP said she has never seen it to this degree and my rheumatologist won't discuss it, says it's a dental issue but of course it is caused by the lack of saliva due to Sjogrens.

Any advise would be gratefully received - I'm at my wits end.

[WinterSwimmer]

Forgive me, but I don't understand why you cannot get dentures? Have they explained this to you?

[Crystal68 in reply to WinterSwimmer]

I was told I need to have saliva to hold the dentures in place and as I have none it would not be possible to wear them

[WinterSwimmer in reply to Crystal68]

I see. That is really horrible.

[Jillymo]

Hi Crystal,

I have Sjogrens and gum loss which was made worse by also having a low B12, i'm now on injections.

Sjogrens as you know is a nasty illness which is now brutaly attacking my joints, the pain is excuciating !

There is treatment for gum and bone loss but it is costly, i'm talking 4-5 thousand if not more. They can do laser treatment my daughter is having it carried out in Bath. Google it... al-faperio.co.uk/laser-dent...

The link is just an example but it would be worth having a look at what is out there. I also saw they now do an electric toothbrush which gives electric light therapy but didn't manage to catch the name of the brush.

I hope you find something that helps.

[Crystal68 in reply to Jillymo]

Hi Jillymo,

That's very helpful and reassuring thank you! Just to know there is something that I can do is a huge relief.

[Jillymo in reply to Crystal68]

Hi Crystal68,

I do feel for you the pain must be excruciating to put up with on a daily basis. I were prescribed a spray for my dry mouth but there are lots of things on the market you can buy. It's the inflammation and gum desease that needs to be controled.

Your rheumy is very ignorant of how much damage sjogrens can do and i'm afraid needs to be educated. I would be batting him some information.

The laser treatment my daughter is having private is very expensive. She has both bone loss and gum disease. With the bone loss she hasn't the option of having inplants so thought she would try the laser treatment at great cost, she is having the first session next week. 🤞

I wonder if your GP could refer you to the hospital NHS periodontitis for an opinion. I am not aware of any hospitals that have a laser but it might be worth looking into.

nhs.uk/conditions/sjogrens-...

nhsinform.scot/illnesses-an...

[dg70 in reply to Jillymo]

I live near Bath. Can you let me know how the gum and bone loss treatments go as I may consider it.

[Jillymo in reply to dg70]

My daughter is having the first laser treatment this coming Tuesday. I am not sure how many treatments will be needed but all in all I think we are talking five grand. 😱

I will keep you up dated, this is the place she is going to ......

al-faperio.co.uk/laser-dent...

I'm not far from Bath but havn't got that sort of money infact I am attending the RUH next week for a scan. 😘

I just came across this which might be worth a read seeing as your in the area........

uhbristol.nhs.uk/patients-a...

[dg70 in reply to Jillymo]

I am under Rhuematology at Bath. I just swapped there recently as I found out they were a lupus centre of excellence. I have Dr Flower who is a Sjogrens expert. I was under Dr Price at Swindon Rheumatology but privately during covid for a couple of years but as Bath is recommended for all round autoimmune I thought I'd try when I went back to NHS. They have been fantastic so far with me. I am getting all sorts of further tests but still it seems Sjogrens has the back seat to Lupus. So much is not provided free when we suffer so much with it. As I said I would be really interested to see if the laser treatment has any effect. I had laser treatment on my meibomian glands on my eyes which was really good but again I had to pay at a private eye clinic near Swindon. I'm losing teeth bit by bit and I would love to be able to reverse or just hold off more tooth loss for a while. I will look into the special toothbrush though, it's worth a try. Thanks for the info.

[Jillymo in reply to dg70]

How strange I have also asked to be refered to her and my first appointment with her will be in Jan ! Oh snap, Price was the first Rheumy I saw but she basically dismissed my issues so ended up going to the Mineral Hospital in Bath which is now sadely closed. From there I went to London but the traveling became too much for me - hence now the RUH because I have lost faith in the GWH.

I have more than my fair share of autoimmune conditions and albeit a pain having to go to Bath. I am fed up of seeing consultants who do not understand my conditions. I have found teaching hospitals seem to take more interest especially when it comes to rare conditions.

[dg70 in reply to Jillymo]

So true. Dr Price was not really interested in my Lupus side of things and although Bath Hospital is awful to get to, they have been great so far. I got referred straight away for physio, they did a full set of bloods, asked for a urine test which Dr Price never did. I saw Dr Flower the first time then 3 months later I saw a specialist nurse who was very good who has since referred me for an MRI and nerve conduction test at Bristol. They have to meet high standards to be a Lupus Centre of Excellence and there are only about 10 in the country so I thought it must be worth transferring there. Dr. Flower was good and very thorough and I got nearly an hour with her. Just list any new symptoms or unresolved issues and hopefully they will be just as good with you. I feel so bad for those who get a below par Rheumatologist who only looks at blood results and not symptoms. It would drive me mad. I think even if it is a pain to get to Bath I will continue to go as long as they continue to be as good because to be honest its a jungle out there in terms of finding a good Rheumy and Hospital. So many can't even be bothered to cover autoimmune, its arthritis or nothing. I hope you get just as good an appointment. I also rang when I had a sudden health issue and got a reply in 24 hours so the hotline works too. Remember take your history with you, she did ask for a copy of any private medical records as nhs she can get hold of on the whole. Good luck. Let us know how it goes.

[chrisj in reply to Jillymo]

I've never heard of that

[Jillymo in reply to chrisj]

Apparently it can help with bone regrowth and the gums.....we shall see .

After my daughter paying out over five grand lets hope it works. 🙏

[chrisj]

Sjogrens here as well with damaged saliva glands.

I was warned about dentures and had a couple of them made by a dental clinic, one from plastic one of metal. Neither of them suited or fitted well enough. I was offered implants and I'm afraid I chickened out, I couldn't face it. The clinic had removed several teeth and said replacements or dentures might be a problem. I'm left with gaps where molars were and tend to chew using my front teeth and its difficult I know.

Gums have receded some of its genetic I'm told by the dentist, some is sjogrens damage. Its simply a case of adjusting, I need to sip fluids with certain foods to be able to swallow them. I use oralieve to ease the dryness and constantly hope that things don't get any worse.

I'm so sorry you're dealing with this. Diet seems to be your only option, soup is one of my choices as its so easy to get down...its about diet really when there's nothing else they can do.

[Dottie11 in reply to chrisj]

Same here. I am now a front tooth chew also.

[Crystal68 in reply to chrisj]

It's a horrible condition. I am in so much pain all the time as most of the nerves in my gums are exposed due to gum deterioration. My 4 front bottom teeth are dead and the roots are now infected, so root canal is the only option apparently. It's just so frustrating that my dentist cannot offer any solution as it is inevitable I will lose my teeth. I tend to eat a lot of soups/casseroles and avoid breads, refined sugars, gluten, anything that will cause inflammation. It is so limiting.

[weathervane]

Have you been referred to a consultant dental surgeon to get more specialist advice?

[Crystal68 in reply to weathervane]

No but I've been to 2 other dentists for their opinion and had an appointment in the dental hospital. It's like no one really understands sjogrens and they just nod and say yes it's awful but this is all you can do..no real solution other than keep getting fillings for as long as possible.

[weathervane in reply to Crystal68]

I was referred to an endodontist when i had problems dealing with a tooth abscess, might be ableto provide advice. Not sure where you are in Ireland, this is email for Sjögren’s advocate

[e-mail]

might be able to advise you, best wishes.

[Jillymo in reply to Crystal68]

If you have attended dental hospitals I find it appalling that they areso ignorant of the damage sjogrens can cause. My dentist did give me special toothpaste and offered me a spray for my gum's which I never got!

Google for good sound information so that your armed when being seen at such places.

[dg70]

I've had one successful tooth implant but it wasn't cheap. My next one will need bone implanted first then the tooth put in. A tooth implant is relatively painless, feels a bit odd for a week then you wouldn't know it wasn't yours. You need mortgage type money though if you have to do every tooth. So sad we get no help with this at all.

[Crystal68 in reply to dg70]

It is very sad. It feels like sjogrens just isn't understood.

[Cas70]

find another Rheumatologist and Dentist ! I was diagnosed 8 years ago, my dentist immediately gave me a sheet of instructions and put me on to Colgate Duraphat 500 - even at this stage - use Duraphat - clean and then do not rinse your mouth. Xylimelts from Amazon are a soluble tablet you stick on your gums at night. It slowly dissolves during sleep to keep your mouth moist and stop decay. Can you get to London Bridge - St Thomas’s and Bart’s Lupus Clinic. Demand your GP refer you there or to one Specialist Centre near you. This website should have a list of Clinics near you, if not ring BSSA British Sjogren’s Society - look them up and call their advice line - they all have Sjogren’s so are amazing. That a Doctor once again has no interest just makes my blood boil. Good luck and FIGHT to get the proper attention- under the Patients Charter we all have the right to choose our Hospital and to have at least 2 opinions. 😘

[Crystal68 in reply to Cas70]

Thanks for the advise! I'm in Ireland so don't think I'd get a referral. I have an urgent appointment with my rheumatologist coming up I'm going to have a really interesting conversation on the lack of care for sjogrens patients. I use the xlimelts, a mouth spray and mouthwash. I also take a lot of bone and gum supplements. All was going fine until about 2 years ago there was a dramatic deterioration, no one knows or cares why.

[KnitSewPurl in reply to Crystal68]

Have you had a Dexa scan? To check the status of your bones? If it shows that you have density issues then you know you have issues with your bones which means you need Calcium supplements.

I would suggest you might want to raise that as well with your rheumy on that as well

[Cas70 in reply to Crystal68]

You need to look for a Lupus clinic in Ireland. Ask the BSSA or call Lupus help line. Definitely work at getting new Doctor.

[Betty909090]

Try this from the BSSA (British Sjögren’s Syndrome Association):

bssa.uk.net/pdfs/informatio...

There are all sorts of dry eye and dry mouth treatments for Sjögren’s disease! Eg lubricating gels and artificial tears etc.

I’m shocked at the hard hearted attitude of your rheumatologist :

“my rheumatologist won't discuss it, says it's a dental issue but of course it is caused by the lack of saliva due to Sjogrens…” 🥹😱👿

It’s also an AI issue and involves rheumatology. 👆

This rheumatologist should be reported!

Get your GP to prescribe these treatments!

BW

[Crystal68 in reply to Betty909090]

Thanks for the link, yes it was a bit of a shock to get no help but I'm desperate now and not taking no for an answer

[Betty909090 in reply to Crystal68]

Thanks for responding!

I’m so sorry for you. We as patients are suffering too much from ignorant, arrogant and patronising doctors.

That BSSA pdf about Sjögren’s Syndrome is very helpful.

One wonders whether this rheumatologist knows the basics??? He/she must read it!