Sarcoidosis - not enough care and attention given to sufferers

Hi Di,

I think you deserve to boast and should be very proud of yourself for transforming your dental condition. It's kind of odd isn't it, when we all constantly tell our children to brush regularly but never think about ourselves. It's the same case with a lot of things when you think of it. Don't cross the street when a car is coming and yet many adults take their life in their hands when crossing the street. Ah the dos and don't of childhood which are ignored as an adult.

I am so embarrassed about my teeth because the front one is missing. I'm so conscious of it when I'm out and I don't want to smile or anything as people can so easily see it. I'd give anything to get them fixed.

I never thought of someone maybe spinning a sad story but of course these things happen. I think the Canadian Health service is quite like our own. I'm sure I read something a long time ago that said this.

I've just discovered I was wrong, they can do a single or double lung transplant without transplanting the heart. It used to be all or nothing but having googled the question a page from Medline Plus which is an American site said the heart is only taken if it is also diseased and also described how the lung transplant was done. Maybe its heart lung in this country. I would have thought that the heart would have become damaged anyway given that it is not receiving a good oxygenated blood supply because the lungs are so diseased.

However, the doctors would still have to come to an agreement over a firm diagnosis and transplant would be the last option taken. I really wish I had never answered that post. I guess only time will tell.

Hi LADIES, Yes I got that same email notification and also read it, but was too confused as it seemed like a very dramatic step to be taking for Sarcoid...and 20 years of having it.

Hopefully she will get the correct help and treatment she needs.

Hi All,

Interesting that the subject of teeth have come up as I have been back & forth to the dentist for the past

month now.

When I was quite under the weather last year a double crown at the back came out but I just left it but then

in Decemember the crown next to it came off , and also my front cap had become loose, so I went to the

dentist, it was agreed [at a cost of £1200] thatI would have a bridge made. He cemented my front cap in,

but within a day it had popped out - hence it was worse now then when he pulled it out to cement it, I got soem tooth cement from the chemist and it stayed in tightly. On going back to have my bridge fitted last week he once again removed the front cap to look at the gum, and once again cemented it back in, but it came off the very next day so I reverted to my bought cement, but now I am having something more permanent done for that tooth.

However this past week, along with a cough keeping me awake at night I have a throbbing in my front lower gum and a tooth is quite sensitive.

You have now got me wondering as I am having so many problems all at once with my teeth.

Can anyone tell me what would be the signs of Sarcoid in the mouth?

Hi Linda

You could try the link below, which is to an abstract from a paper published a few years ago on oral sarcoidosis. Its linked to the US PubMed system so you should be able to access the full article.

For what its worth the abstract says " Oral involvement is relatively rare and, to our knowledge, there have been only 64 cases reported in the English literature. Most cases of oral sarcoidosis present with mobility of the teeth due to rapid alveolar bone loss. Other oral manifestations include asymptomatic swelling of the involved mucosa, gingivitis and ulcers."

http://www.ncbi.nlm.nih.gov/pubmed/15888103

Don't know how useful it is but at least its something sensible that's been published

Morag

Hi June,

I have to plead guilty on the forgetting basic dental cleaning, or at least skipping it. It's so easy when you're rushing around leading a busy life to let 2 minutes brushing become one, then thirty seconds.... The other stupid thing I did was forget that cough sweets are basically sugar pills. I had a terrible cough for years. It caused a lot of semi joking comment in the office where I worked so I used to suck cough sweets all the time to suppress it. You can now get sugar free cough sweets but ten years ago they were almost unheard off.

I have problems with my gums and tongue which I think are due to the steroids and methotrexate. My skin is thin because of long term steroid use, and this also affects my mouth and ears, which are dry and itchy. In my mouth I have sore rough patches and can very easily cut or scald myself, so I have to be careful about what I eat and to let food and drinks cool down. Which is a shame, because I like hot tea and crunchy toast, but now have to put up with lukewarm tea and soggy toast! Trouble with the mouth and throat is one of methotrexate's known side effects. I've been given it as a steroid sparing agent. I suppose it works as I am managing on 10mg of prednisolone despite having "significant airflow obstruction", according to my latest consultant's letter.

Hi all,

Re the "strange email" you received. This is because when you post in a topic in these forums you join the "group" - Sarcoidosis in this case. If someone starts a new discussion in this topic you will receive an email notifying you so the discussion mentioned isn't another forum but just a new thread in the sarcoidosis topic, see https://patient.info/forums/discuss/browse/sarcoidosis-2174 for the full list of discussions.

Users requested this so they could be alerted when a new member joined so they could reply quickly otherwise there wasn't really any way of noticing new members/discussions unless you actively looked. If you don't want to receive these emails you can change the email settings in your profile, click "Edit my profile" at the top right of the forums page.

I haven't read this or the other thread in detail but if you ever feel a post is "dodgy" then just click the "Report" link on the relevant post as this will notify me to check it. If anyone has any queries about anything feel free to send me a message by clicking the Message button under my name in the left column.

Regards,

Alan

Emis Moderator

Thanks Morag - very interesting.

I am going to mention it to my dentist tomorrow.

I do suffer with mouth ulcers not really painful but constant.

Hi Linda,

When I started with sarcoidosis and everything flared up at once my mouth had what looked like the sarcoid rash on the inside of both cheeks and gums and all over the roof of my mouth. Everywhere in my mouth seemed to be swollen and my teeth were hyper sensitive although I do suffer from sensitive teeth normally but this was much worse. Some of the lumps on my palate were hard and the whole lot looked like a jaundiced yellow colour with red patches. My dentist had never seen anything like it and even looked up his book but said he would have to do more research. I didn't get the chance to go back to him as he refused to treat me in my poor health state and because I was on steroids. I still have some hard lumps on my palate and they do get a bit sore as some are under a partial plate I have. My teeth have loosened and I noticed my dentist wobbling them back and forth but as everyone at the time thought I had lung cancer he didn't say anything. I think he thought the lung cancer had spread to my mouth and that was why he didn't say anything. Thank goodness it turned out to be Sarcoidosis. The palate and back of the throat still have that jaundiced yellow colour and there are still some red patches but it is all much less than it was 2 years ago. My teeth are few and far between now. I have no back teeth on the lower jaw only 6 teeth at the front which have worn down to expose the pulp so are very sensitive. I only have 5 teeth on the upper jaw two of which are broken down to the gum. I really need to have them all removed because they look to be beyond help. I took good care of my teeth but 3 episodes of severe bad health and a couple of occasions knocking on Saint Peter's door have taken their toll I'm afraid. I am so very embarrassed about my teeth. I'd give anything to get them fixed. I just need to find a dentist who will help and then I need to find the money to pay for it.

When you are next at the dentist, why not ask him if he can see anything abnormal such as raised lumps, colour change etc. He can see much better than we can and should be able to put your mind at rest or if he does see anything you can tell your consultant so he can take the proper steps to treat you.

You are so right about not thinking when we suck a cough sweet. Mind you its just a relief to stop the constant cough isn't it?

Good luck at the dentist anyway

Thanks Morag for the link. It was short but to the point which is good and I think it should help anyone in doubt. I was just wondering if only 64 cases were reported because it mimics other types of mouth problems and has possibly been misdiagnosed in people as mouth ulcers and gingivitis although my dentist did say he'd never seen anything like it before. Perhaps people didn't report it and just settled for home remedies. When you think how many of you were either misdiagnosed for sarcoidosis or had to wait an eternity for a diagnosis, it isn't hard to see why only 64 cases were reported.

Poor Di, you will just have to dunk your crisp toast in your hot tea and tackle two problems at once. I really do feel for you and really hope that one day the sensitivity will be gone and you can enjoy a hot cuppa and some nice crisp toast. You keep your chin up and we will keep hoping for you to experience improvement.

I've just remembered one other symptom I had was severe dry mouth which made my tongue even more sore. I drank gallons of water every day it was so bad. The weird thing was that as it improved I then started to hyper-salivate. Now I am back to severe dry mouth, sore tongue and sore patches on the bottom inner lips and sometimes the cheeks, but I think it may be more due to the medication than the sarcoid. I'm not sure

I definitely recognise the sore and dry mouth and need to drink lots. I get sore patches and blood blister in both my mouth and throat. I think it's due to medication rather than sarcoidosis. But you can't be sure, just because it hasn't been widely accepted. That doesn't mean oral sarc is really that rare.

Morning all

Dry mouth - my respiratory consultant would definitely say thats a symptom of sarcoidosis. May also be related to medication but she was warning me to drink plenty before she even started giving me any treatment. IF you have sarcoidosis you're at higher risk than most of becoming dehydrated, one of the symptoms of which is a dry mouth. At least that's her experience.

Unfortunately its also a side effect of some meds and its also a bit of a vicious circle in that if you drink too much it can then start to cause problems in its own right

Hi All,

I have to admit that last night I felt pretty awful as I started to get a sore throat and mouth. Then I fell asleep in my chair and woke up at 4.30am wondering where I was. Even my rash was stinging and I coughed up horrible yellow green sputum (sorry for being too graphical) but I am wondering if it was all due to having a very upsetting phone call from my housing association. You know how they say that if you are already unwell then anything stressful will make it worse so I think that was what it was.

I got a threatening call to say that my rent was in arrears and if I didn't pay it by 22nd January I would be evicted!!! Wow! I was stunned. Apparently the housing benefit people had paid my housing assoc over £1000 in June 2012 when I moved here. Then they discovered their mistake and demanded it back but didn't get it until December 2013! Now if that was one of us not paying something back they would have taken us to court but they didn't take the housing assoc to court. It's disgusting. Anyway because of the way housing benefit is paid - 4 weekly and the rent is monthly then there is always a short fall but of course with the over-payment there was no short fall to make up until now. I didn't budget as I was always told I didn't owe anything and now they want all the money by Wednesday at the latest. Of course I hit the panic button and made myself feel really ill but once I got a hold of myself I have found that they have been charging me for services I don't get! Unbelievable! I phoned the office to put my findings across but the housing officer is conveniently out so I am busy trying to put it all in writing in a way that is easily understood.

It's bad enough feeling like death warmed up without having morons scare the hell out of you. Anyway my observation is a exacerbation of symptoms since the fright I got so fellow sufferers beware.

Hi June, that is disgusting.

Also surely they should of put something in writing initially, not just phone you, what chance have you got

as you are caught totally unawares and not able to prepare yourself or have all the necessary evidence at

hand.

I went to the dentist today....to discover the pain in my front lower tooth & gum..is caused through an

infection......just how much more can go wrong with my teeth.

He went through the options and although I wasnt happy I am having root canal next Friday [nice birthday

present] this wont be the finish of it though unfortunatly as they I may still have to have a crown...what joy!