[nicky00]

This is a bit of a twicky one.
Yes Im actually talking like that ( twicky) as yet another bit of tooth in my mouth has fallen away like the side of a cliff into the sea.

I really am not sure if past oral hygeine is in anyway responsible for the demise of my tooth situation in general, but I feel that since I have had lupus that things are not as they should be in my mouth and I have lost more teeth and have had more problems than I ever had before.

Current situation is that Im fighting with the use of steroids a lichen planus rash due to a Meparcrine drug reaction.
This second time round the steroids are not dampening as much the ulcers and inflammation in my mouth.
The weeks leading up to waiting for steroids meant that my mouth was inflammed, bleeding sore with very painful gums.

I mentioned to my doctor that my mouth is causing me problems and that Im worried about the cost etc of sorting what could ultimately be a bigger problem in the future out. She did tell me that she would recommend me for treatment as she termed it exceptional circumstances but I needed to talk to a dentist first. Im thinking that the problems immediately due to the drug may perhaps be covered by 'exceptional circumstances ' but not all the previous problems which Im wondering 'if ' perhaps lupus inflammation has ever been a cause .

Believe it or not |I have not been to see a dentist yet as I simply thought he could not do much for me till the Mepacrine is out of my system.
It would seem that after 8 weeks ( the dermie said eight weeks) that it is still not.

Im not sure that one can get treatment on the national health for lupus?

When I look back and think how many problems I have had with my teeth in such a short space of time and now exacerbated by the current situation I do question if lupus is the culprit.

I know that the drug reaction is indirectly due to lupus but how does one go about advocating that poor oral health is a side effect of lupus if indeed Im barking up the wrong tree?

Anyone had any experiences of lupus being a legitimate cause of oral health problems?

Nicky

 

[LolaLola]

Nicky, Yes, I have a friend in Scotland who suddenly had to lose several teeth due solely to her auto immune problems. She was devastated. Also people with Sjogrens do seem to suffer a lot in this way.

I find my gums inflame more than they used to, and because my hands aren't good I have to put a lot more effort into teeth cleaning. Generally though I am quite fortunate. I have had the same wonderful Dentist for 35 years. Hate the thought of him retiring! Only difficulty is, like so many parts of the UK, NHS Dentistry here is almost non existent. We pay privately and are on the HSA Health Insurance which gives us back half of the cost.

Good Luck,
Dental treatment can be a bit of an ordeal with Lupus, due to achy jaw, swallowing problems during treatment etc. Some people find they have to increase heir steroids during Dentistry for this reason.

X Lola

 

[nicky00]

Oh lolalola

Thankyou for such a speedy reply.

Yes my dentist is Private and I did not take up the prepaid optional insurance as I always intended to find myself an NHS dentist. Naive is me

Ok so I might be on to something....my instinct is starting to say there is more to this than just 'bad teeth problems'.

Part of me is just a bit fed up at the moment of 'putting up ' with discomfort.

It must make sense that inflammation can be anywhere, so why not the gums, its tissue after all.

This disease is uncovering itself perpetually is it not..


P.S Boy I forgot about the achy jaw and locking sensations, painful stuff, all the more lupie experinces coming back now lola

 

[LoopyLoo]

Hi Nicky,

My mouth has been a mess since diagnosed but my docs feel it is more a reaction to the anti-malarials rather than the lupus. Oral Lichen Planus has been mentioned to me and can be caused by both lupus and anti-malarials.

The only thing that works for me is Gengigel mouthwash. I get it from Boots and it isn't cheap at £7.49 but it really works for me. As far as I know it isn't available on prescription but others are. I used another one - think it was Corsydyl which just made it worse.

I only rinse with a small amount each day to keep symptoms at bay otherwise my gums get so inflammed they bleed, I get ulcers and the surface erodes from my tongue. If it gets that bad then my dermy gave me Ardcortyl paste (available with or without prescription) and steroid tablets. Can't remember the name right now but they are the last resort and usually work in 24 hours.

I haven't been to a dentist in many years.....laziness on my part and I've always had good teeth! My hubby's dentist is actually knowledgeable about lupus and oral hygiene so I now have no excuse!

Hope you get some relief soon,

Lots'a'luv,

Pam xxx

 

[cemc]

I have not been diagnosed with lupus, but did have significant dental problems leading to full upper and partial lower dentures about 10 years ago because of teeth crumbling and breaking. What I have been diagnosed with is coeliac disease (another autoimmune condition). This is definitely the cause of my dental problems: undiagnosed coeliac disease causes problems with malabsorption, dental enamel defects and demineralisation of teeth. If you have any gastro problems at all, or have any possible malaborption problems (like low B12, folate, iron when on a normal diet), I'd strongly suggest you get tested for coeliac. Initially its a blood test and if that is positive, then you have an endoscopy and biopsy. Its important to stay on a full gluten containing diet the whole time you are being tested though or the tests won't show anything.

 

[nicky00]

Hi Pam

Wondered where you were as not seen you around, sounds like you have been through the mill.
Now I'm interested if the antimalarial culprits are Plaquenil or?
My mouth reaction is due to Mepacrine or Quinacrine.

I use Difflam mouth rinse but it was not the one that the Dermie recommened. The Dermie prescribed me another but to cut a long story short I never received it.

The oral lichen planus was two fold. It began with patches that were not really that sore, but made my mouth feel like I had cotton wool down the sides etc.
Gradually it progressed, you could see the reddish patches with wickems straye(sp?) and they did get sore.
Ultimately though it progress alongside the above with really raw ugly ulcers.

Everywhere and down my throat, lips.

There were not many places I did not get it.

The rest of the body story is a long one

Nice to see you back on the boards



CEMC

Originally before lupus diagnosis my doctor was thinking along the lines of gluten intolerance, celiac? coelac?.

I would be interested in getting a blood test just to see how absorbtion levels work in general. Im always right on or slightly below the anemic line.

Thankyou
More food for thought

 

[peonyprincess]

Pam,

Sorry to hear that you are having more problems than you need. Have you ever been diagnosed with Sjogrens? Sjogrens is another auto-immune disease. The basic gest of it is that you have dry oral mucous membranes. So, with that in mind, if you have no saliva, then all the sugars and junk break away at your teeth twice as fast if not faster thus causing cavaties. It also feels like you have the worst dry mouth in history. I was finally diagnosed after I lost the majority of my teeth. Now, I have false teeth and I take Evoxac three times a day. I also chew special gum, use special mouth wash, and so on. You can try the gum on your own and you don't need a dentist to prescribe them. You can by them at Walmart or even Walgreens. You can also visit a dentist and ask him/her if that is the problem or even a regular medical doctor can diagnose you. Good luck and I hope you get taken care of soon, before you lose any more teeth.

Nancy

 

[Clare.T]

Hello Nicky
I am so sorry you have had all these awful problems with the Mepacrine. It is truly rotten luck.
I wonder if your doctor meant you should get a referral from your dentist to a hospital specialist dentist who knows about autoimmune diseases. I have often wondered how such a referral would be made. Surely a GP can do it.
I was told my awful teeth were due to first, genes and second, dry mouth.
Even though I don't have official Sjogren's diagnosis I do have 'bone' dry eyes and the anti -Ro antibodies.

I know there is a specialist dental service at some London hospital for Sjogren's patients. It's discussed on the UK Sjogren's support group site and I posted about it some time ago so maybe a search would bring it up.

There's also an offical dental advisory service you can call up. They were very helpful when I got worried about not being able to afford my dental care and wondered how I could get treated on the NHS.
I am investigating dental insurance at the moment because I am paying about £100 a check up 4 times a year to try to keep my very expensive 'teeth' intact and avoid gum disease -they're all crowned and bridges now I'll see if I can retrieve that details of that dental advice service.

All the very best

Clare

 

[BigSis]

Hi All,
I've cracked two teeth in the past six months and had to have one removed (very painful root fracture:worried
My dentist seem to think this was from steroid use. I don't have a sjogren's diagnosis although I do have dry eyes.
I'm not sure:shrug: My teeth have always been very good prior to this.

Nicky: sorry your problems continue............wishing you luck

 

[nicky00]

Claire
Yes Claire it was rotten luck.
Im still glad I tried it though if that makes sense at all

The Rhumatologist was great last time I saw him, a complete turnaround of bedside manner. My mum is sure its because he overdosed me

I phoned the dental practice before I read your post and the receptionist advised me that 'yes' the dentist can refer me to an NHS hospital.
Am seeing him next week so will update.

Thanks for the info, will investigate and anything else you send my way.
Perhaps my doctor meant she would simply back my dentist with referal, not entirely sure yet but will update when I find out.

Bigsis

Yes Bigsis, I think my teeth were good at some point., its hard to say where something begins and ends sometimes as my history when I look back tells me I had symtoms way before I realised anything about lupus.

I dont believe I have a dry mouth although its not been unknown form time to time. Eyes are needing some tests perhaps but again not dry, well at least I do not believe so.

Peonyprincess
I love chewing gum but Im not sure I can afford to at the moment, it feels as if one or two will be sucked out .
That gum sounds great though and I will look around in the uk to see what is available in the future.
Its amazing what our salivia is meant for is it not.

I tried to post a few pictures for the record of my hands.
Dont be eating anything when you peek, honestly no joke!

Actually after posting the pics ,I thought tis a bit confusing as this post is about teeth!.
Its the early hours here so forgive me,I shall leave it where it is.

 

[Clare.T]

Morning Nicky ! We are early birds indeed.

Your hands are about what I imagined but of course seeing them has great impact. I can only say that my heart goes out to you.

I think you are right about chewing gum. When I was giving up smoking I chewed nicotine gum and ordinary sugar free gum. I have a bridge of three back teeth, the last two rather precariously attached to the only real one, which is crowned.
To my horror that section became loose and a slight infection set in within a few days but died down. As I had an appointment in a couple of weeks I just waited until then. I got right royally told off for waiting. The repair cost me £430 .

I had saved money by not smoking but it was supposed to be for a custom made periwinkle blue long coat of the softest leather not fixing my teeth! That section alone must have cost about £800 of the total remodeling job.

Hugs
Clare

 

[nicky00]

I had saved money by not smoking but it was supposed to be for a custom made periwinkle blue long coat of the softest leather not fixing my teeth! That section alone must have cost about £800 of the total remodeling

What a marvelous sounding coat Claire! Did you ever buy it...


Just for the record all I did see my dentist last week.

He dosnt think lupus effects the hard tissue ( hard tissue being teeth) . It would be the soft tissue the gums that could possibly be affected.
In any case it would only be Sjorgens that would legitimise my concern about lupus being connected to poor dental health.

The acute case of mouth Lichen Planus I have had which was accompanied by mouth ulcers and bleeding gums would only effect my dental health if it were chronic or long term.

I saw Rhumatologist at a talk recently and told him about the above. He suggested that I go and try and get myself tested for Sjorgens even though I may not have the obvious signs, dry mouth , dry eyes.
He thinks that I still could have it mildly.

So there you go, at least there has been more information on the subject.
Either way its good to know.

Thanks all for the help and input.

Nicky