oral health

[allanah]

Sorry I have been very fed up and in pain last few weeks.

Hips and Knees need replacing but in the future. Change of biologics on the way as I have failed on Humira, am getting some form of infusion, and now have exceptionally painful mouth and i mean painful ! Saw dentist this morning and have "burning mouth syndrome " and a "lesion" on my tongue. Being sent to oral specilalist in Newcastle but is a 12 week wait.

Has anyone had experince of this problem?

To top it off my f....ing DLA form arrived , not due to finish till February, b... cheek of them! Asked the reumies yesterday and was told the hospital will no longer fill in the forms due to data protection. So asked my GP this morning who said he would support me and fill in the bit where a member of your care team has to sign, so nice of him, cos it stresses me SO much!

So if you can advise me on the mouth issue i would be grateful

Axx

[Barrister]

Hi Allanah, I too have Burning. Mouth Syndrome and have had it for nearly 4 years. Apparently it goes away on its own but generally lasts for 7 years. Not a pleasant prospect, I know. I was diagnosed with this at the same time as having a cyst removed which was growing in the bone between my two front teeth. This was extremely painful too and I hoped that was the cause of the pain but once it had been removed and was healed I still had the pain so was then diagnosed with BMS. It has eased a bit and some days it isn't too bad but it is still definitely there. I find that chewing gum helps to keep my mouth moist, sucking boiled sweets or eating crusty bread makes it more sore. And my teeth are really sensitive but my dentist is very good and gentle when examining my mouth. Sorry that I can't be more helpful. Clemmie

[allanah]

no ,thanks Clemmie, that is helpful, i had oral gel, but it isnt enough and will try your suggestions, thank you so much . but 7 years omg x

[allanah]

Clemmie, he mentioned to me drug reaction may be the cause, did they mention that to you ?

[Barrister in reply to allanah]

No, I can't remember ever having been told that. But then my GP wasn't particularly helpful anyway. But I feel your pain literally (or something very like it)! Clemmie

[claireyj]

Oh Allanah am so sorry you are fed up today it's not like you ...never heard of burning mouth thingy but sounds awful you poor thing. Somtimes these things do go as quick as they come though, about 6 months ago I thought I had sjogrens all the signs were there and I thought oh no great another thing to put it with but it went and touch wood has stayed away , hopefully this will happen to you and this horrid burning mouth thingy will bugger off ....hugs xx

[allanah in reply to claireyj]

Thanks, ye doc said I have Sjorgrens and gave me biotene gel but it's just got worse since then

[flaxton]

Allanah

Feel for you it seems this bloody disease brings its friends with it. Hopefully the new infusion might help. It must be so hard but keep going.

Love Lorraine x

[allanah in reply to flaxton]

Ye pinning my hopes that the new infusion calms everything down, thanks x

[Hidden]

Oh poor you Allanah, that sounds horrid. I had problems with my mouth and tongue after having septic tonsils and found that Difflam Mouthwash helped as did warm, salt water rinses. There is also something called Biotene Gel which is for dry mouths that might help. As Clemmie has said also, chewing gum helps counteract dryness.

Hugs,

Cece x

[allanah in reply to Hidden]

Thanks Cece , I use biotene gel but it's just not enough, the doc thinks it's an allergy to one of my drugs, or just my immune system going mad, just have to wait till I see the specialist . If u look at the websites it says stress related but I phoned him and he says mine is RA and drug related so .....will see xx

[Hidden in reply to allanah]

I saw a consultant immunologist at the RVI in January because of my increasing intolerance of drugs and worsening allergies. They felt after all the tests that they daren't risk any immunotherapy as I've had anaphylactic shock from IV drugs previously - so I'm left with having a 7 day course of prednisilone every 3-4 months to keep everything under control. I'm wondering if there is a mouth wash with some pred in it?

Cece x

[lorann in reply to Hidden]

Now that you mention it, there may be. Ask a couple of your Pharmacists, also some Pharmacists make their own concoctions for an individual, so maybe someone will make one for you .Best idea might be one made with anti-histamines, if not Prednisone. Good luck !!

[allanah in reply to Hidden]

Excellent reply , I do react to many drugs and had anaphylacsis to Remicade.

[Treesha]

Hi Allanah sorry to hear your news as if things weren't bad enough for you. I can't help with burning mouth syndrome. Just the usual sjogrens for me. I have however just had an op on my mouth to remove a calcified stone so I can relate to soreness and pain in that area. Good luck with it all hope it doesn't last too long. Take care Tricia x

[allanah in reply to Treesha]

Thanks And the dentist did mention blocked salivary glands

[allanah]

Thanks

[Treesha]

Oh dear, that's been a problem for me for many years. If this stone removal doesn't help I may have to have the whole gland removed. I hope you don't need any procedures for that. It's one thing after another isn't it! I'm always told to chew gum but I get terrible jaw ache. Haha oh well could be worse I suppose xx Take care Tricia

[allanah in reply to Treesha]

Ye I get RA in the is it TMJ joint in my jaw too, just pretty fed up with it all at the moment !

[Treesha]

Yes I think it is the tmj joint. I would like to say chin up but that might hurt too im going to cheer myself up with a brew, why don't you join me. X

[allanah in reply to Treesha]

That would be lovely! At your or Llorets porch lol!

[allanah]

And a soft sponge cake maybe ?

[Treesha]

Mmm coconut cake for me and lorets porch sounds dreamy xx

[allanah]

Oh yeeeeaaaah! Think it's on after thanksgiving at the end of the month!

[Trulyfedup]

I'm sorry to read about your mouth. I am (or was) a dental nurse. Why don't you ask your dentist for the gum shields that you cool, that might help but it does come and go. I sometimes hurt and burn so much when cleaning my teeth it's horrible but you must not stop cleaning them it is so important you don't. I don't know why but I do wonder if it's part medication when I was on gababentin my mouth was in a terrible mess and I suppose that makes sence if we take strong painkillers all our nerves will be affected not just the ones that hurt. Anything cool will help momentarily. Cool water swirled around the mouth will give a little respite. I am so sorry for you as it's the last thing you need. Are you on gababentin? Maryx

[allanah in reply to Trulyfedup]

Yes Mary and thanks for the answer . I had gabapentin since Xmas for a few weeks last year after my spinal op then stopped . But this mouth has got worse for the last couple of month . I am now back on it again since last week and is amazing for my hip pain so I hope it's not that!

I was perturbed to google to find it said it's psychological ! My dentist said drug allergy. , do u know the causes? Or how long it lasts? I am swilling water like a whale at the moment ! And really missing spicy food as the dentist said to stop it. It's really making life with RA and this pretty intolerable.

[Trulyfedup]

Oh honey how awful for you. From what I can gather Gababentin is a nerve painkiller and the nerves in our mouth are very active. The only thing I can say is, brush your teeth and brush your teeth again...if you stop or cut back on cleaning gum infection may come and that won't help you at all...even if there is blood clean more as blood is a sign of infection....I agree Gababentin was excellent. when I was on it (I've got nerve damage in different places but I started to have fits so was taken off it (it was never proved that it was the Gababentin). Fits now have stopped. Most doctors thought it was something that happened to me in childhood resurfaced. (God knows why after all these years). I do tend to agree with them actually...no more fits now! Gababentin I believe is excellent fro nerve damage so it's a good drug for you to be on. Use a good mouthwash, not one of these that just make your breath smell nice. I don't know if I'm allowed to say which one on here but I starts with a C and dentists recommend it. Maybe when your body has become adjusted to drug your mouth will improve...I really hope so...I know how awful it is. I send you a smile and so does chicken. Maryx

[allanah in reply to Trulyfedup]

Thanks Mary and chicken, ye I will try c as it's ok to tell me your experience and support. ! Thanks again x

[Trulyfedup in reply to allanah]

Have you received MRAS daily "thingy" I think my iPad must be playing up. Maryx

[allanah in reply to Trulyfedup]

Mine did arrive today x

[Trulyfedup in reply to allanah]

Hello Allanah, my iPad is still not receiving anything..I just go on to a post I've kept and log onto that...I've got a funny feeling I've done something...it would be par for the course. I'm back on MTX and already the vomiting and blisters ar starting. Next week I'm back to the 25mg injections...so feeling a bit fed up at the moment and in 3 weeks I start my infliximub infusion again. There was something on the CT scan...it's a bit embaassing to tell something is wrong with my colon...going to the hospital on Thursday to find out...on a nicer note my liver, kidneys and lungs were all ok...so that's good. I hope you are feeling ok...it's a long haul isn't it, sometimes I must sound such a Mony Miny. Take care. Maryx

[Trulyfedup in reply to Trulyfedup]

Just seen you had flu I really hope you are feeling a little better. Maybe pub night soon when site is up and running again. Maryx

[allanah in reply to Trulyfedup]

Yes sounds like something techie, you can click on the post were the moderators write and the guy who wrote the navigating the website is technical and will give u advice. Yep full of flu and hip pain, I want summer back!

[Trulyfedup in reply to allanah]

Oh bless you...let's hope it doesn't last too long. Maryx

[Trulyfedup in reply to Trulyfedup]

Can someone tell me if they are seeing this post...please...I'm not sure if I'm still on this site..thank you.maryx

[allanah in reply to Trulyfedup]

Hello Mary! I don't think u r banned..... Yet ha ha ! Busy tonight and got flu do being quiet, hoe u r ok xxxx

[Hidden in reply to Trulyfedup]

Mary, I haven't received one for ages, you're not alone xx

[Trulyfedup]

Do any of you have periods where there is just so much mental lethargy? I haven't even got dressed today.....I used to be running around here and there...I've just spent the day on my bed...I wonder if I am going into a depression or I'm just being lazy but today I've got no drive at all. Maryx

[allanah in reply to Trulyfedup]

Yes in one today myself, of u look at the spoons theory it's very good

[Trulyfedup in reply to allanah]

IM BACK..IVE DONE IT!!!!!!

[allanah in reply to Trulyfedup]

Lol u genius... Not lol xx

[Trulyfedup]

All I know about spoons is when chicken plays them!! What is the spoon theory? Maryx

[allanah in reply to Trulyfedup]

Ok then you start of with six sons in the morning! Now u have to make a choice when u will your spoons , so one spoon is getting up, 2 is getting washed and dressed, so you only have 4 left for the whole day! So do u shop or cook or use it having a bath etc etc. the other way is an energy pie! Do u eat all the pie in the morning and be exhausted all day or just eat little bits. ( of energy) all day. !

[allanah in reply to Trulyfedup]

Have a look below re spoon theory