My sister - Vitamin D and Calcium checks.

Mat48

My sister has just been staying with me for a week. She has had a horrible problem with a burning sensation in her mouth for four months now. She is deaf so found it hard to describe this to her GP. So I offered to speak to him on the phone when she was in seeing him this morning. I explained to him how distressed and pained this burning mouth is making her feel. She is champing her mouth a lot and was quite weepy about it with me so I really wanted to help her find out what might be causing it and how it could be treated.

He was lovely and went through her blood results with me so I could later explain them to her. The main one that flagged up was her ESR which was raised at 44. On this basis he has decided to refer her to a rheumatologist -although her rheumatoid factor was negative and she has no joint pain.

I was very reassured by the way her London GP spoke - he didn't rush me and the tests he has done so far seem thorough.

He told me that her vitamin D level was low at 56 - which made me wince because my GP refused to take mine and never told me my calcium levels were low either - despite the fact that I'm presently on Prednisolone for RA and am hypothyroid. I had to get my Vit D done privately and found it was deficient at 28. When I explained this to my doctor he just shrugged and asked what I expected with living in the northern hemisphere? He agreed to prescribe AdCal for me but I'm still kind of shocked that this test isn't done routinely here in the far north of Scotland - especially for those with autoimmune diseases? I feel the AdCal is making quite a difference to my frame of mind but perhaps this is just coincidence

I'm wondering if anyone here has been diagnosed with sero- negative RA or Sjogrens with only mouth symptoms of this burning nature? I know I'm just being a worry pot of a big sister - but its hard when you don't see much of family because of geographical distances and can't just pick up the phone because she's deaf.

Boomer13

Hi Mat;

I'm sorry to hear your sister is having these difficulties. I know there are a few immune-mediated skin problems that can cause symptoms in the mouth. I'm sorry I don't know what to suggest except maybe a consultation with a dermatologist.

I gather nothing was revealing regarding a physical exam of her mouth? Does she have any skin problems?

Good luck, I hope you are able to find out what's wrong and she can find a treatment.

Anna

barbara12

Hello Mat
What a lovely sister you are,I hate having mouth ulcers because of the pain, so your poor sister, it must be awful.
I find it interesting that not all gps are not testing for low VitD levels, neither does mine... :roll:
Sorry I cant offer any advice but I do hope she can get some help very soon..xxl

Mat48

Thanks Anna and Barbara. I am quite worried about my sister too. She is a teacher of the deaf, working with hearing and deaf kids, parents and teachers and her mouth and her hands are her living and an essential part of communication for her. I just hope this isn't some weird beginning to her developing RA too? I know there are other types of autoimmune conditions that are more likely to affect the mouth and skin - but neither I nor the pharmacist I showed could see anything other than a rather raw looking inner lip and some swelling and the pain in her face. Unlike me she has never had any issues with her skin at all though.

She had a wisdom tooth removed a few months after the problem had started, in an effort to get to the bottom of it, but this has only exacerbated the pain she feels. She was very weepy when she was here but she has always been the one out of the three of us sisters who has the dramas with her health and is easily got down by health issues which seem to dog her. Last year she had pneumonia (at the end of the summer!) for e.g and a few years ago she broke her ankle very badly and it wouldn't repair at all and she was out of action for almost a year. When she was young she always seemed to have big accidents whereas I and my little sis (also deaf) never actually broken any part of ourselves to date. So it has been strange for me getting RA - I always felt she would be the one to get the serious things where I seemed to just be covered in eczema which of course never seemed too big a deal to me or my parents compared to deafness and broken legs etc although it was very painful a lot of the time. Mat x

daffy2

Vit D is a bit of a hot topic at the moment, especially in the osteoporosis world. If the levels are low then calcium isn't absorbed from the diet adequately, which isn't good news. Ironically it also means that the standard OP treatments don't work properly either - but chances of you being tested to find out before you start are slim to zilch. I can say that once I started to take supplements, as my levels were so low, I did notice a big improvement in the muscle pains I was having, which was good as the OA was quite painful enough by itself! I'm waiting for the results of a repeat test a year on - after a winter of supplements and a summer outside they should be OK.
Is it possible your sister is grinding her teeth while she's asleep? That would make her jaw ache and if she catches the inside of the mouth as well that wouldn't help.

Trugirl

Hi,
I have had almost identical symptoms to your sister for many weeks. It is very distressing and I sympathise as the constant burning sensation is very wearing. Also I have to wait for my drinks and food to cool down and can't eat spicy food. At the start I awoke with slightly swollen lips. I had restarted Methotrexate for Sero-neg RA having had a 2 week break as I frequently have low WBC count so have been taken off that until I see Rheunatology. ( My GP doesn't think it's the Methotrexate). The skin on my lips burned and became very dry and cracked. They are still dry but not so swollen but often looked inflammed especially after eating.

I'm afraid I have no solution yet but this is what I have tried so far. GP gave me antifungal cream, then antibiotic cream. I did loads of research on the internet and have tried loads of creams which will moisturise the lips but not take away the burning. Lanolin cream is the best but it's as if when the skin is soft the top layer has peeled off. GP says it's cheilitis (I think they mean exfoliative). They say it will go eventually but it feels like forever. I hope to get a referral to a dermatolgist and expect a long wait but even then they may not be able to help. GP doesn't think it's an allergy- I also tried antihistamine tablets which helped the initial swelling but not the pain. I've also read about lichen planus but GP says not and also heard of burning mouth syndrome but the skin does look pretty inflammed as I said. By the way, I have tried leaving the skin alone- I don't chew at them etc! but tried leaving off the cream but they get really parched looking and split and sting, especially the skin just inside the lips.
I don't know if your sister has tried any of the above, I'm sure you have both been doing your research too. As I have autoimmune disease I've wondered about Sjorens and Lupus and will ask the rheumatologist when I see him but I don't have most of the symptoms for them, exfoliative cheilitis seems the most similar.

PS I did have low Vit D and took supplements as directed by GP but I don't know if it helped my arthritis, maybe I felt less tired. Anyway, I hope your sister's pain goes away soon.

Mat48

That's a good point re the teeth grinding Daffy. In truth I haven't a clue but my sense, from how she describes the pain, is that its either neuropathic or neurological rather than anything mechanical. Because of having the wisdom tooth out (to try and address the pain) I know she has been seen quite a lot by her dentist and I think he would have picked up on it if this was anything to do with her teeth or jaw? She describes it as being as though she had burnt her entire mouth with a scalding, hot drink.

I feel very cross indeed with my GP about the vitamin D issue because I asked him about my calcium levels and testing Vit D three years ago when my RA first started. He dismissed this request then and dismissed it again 4 months ago despite the fact that I have autoimmune hypothyroidism and RA and was taking methotrexate for 20 months and using sun hats and high factor cream according to instructions. Also I live in the northern hemisphere in a place which has the highest incidence of MS in the world. So to hear my sister's NHS London GP saying that he had tested hers and found it deficient (but still within normal range and twice mine!) fuelled my annoyance I admit! But I'm letting off steam here really because I can't afford to fall out with my GP. The private clinic GP phoned me and told me I was deficient and needed this addressed regardless of autoimmunity or steroids or low calcium levels. So I'm on AdCal D but GP made it clear that he won't be testing my levels at the end of the winter to check its doing the job - Grrrr! :x

Mat48

Hi Trugirl. Thanks for telling me about your own symptoms. My sister doesn't have any sign of skin dryness or cracked lips you describe but it is interesting learning of other people's autoimmune issues (possibly). I forgot to ask her GP about GORD and also about allergies but he seemed pretty thorough and the rheumy might suggest a dermatologist and that she has allergy tests too. I think it could also be menopausal with her but again I didn't think to ask him about this. If he's thorough enough to check her vitamin D levels then hopefully he will take other stuff into account.

I used to always have eczema around my mouth from childhood right through to five years ago when it all went away. I took a lot of antihistamine and steroids over the years and often wonder if there's a connection to this with my developing RA sometimes. I found dry lips and surrounding mouth tissue were helped by keeping well greased with Vaseline and putting a bit of hydrocortizone on around my mouth before I went to bed occasionally, got it back down to manageable proportions mostly. I always had a raspberry stain around my mouth with it though. So relieved it's gone away now - it ruined my adolescence rather!

I try to keep an open mind about my own numb tingling legs but have to say I'm reluctant to go back on Methotrexate now. Rheumy thinks it's very unlikely that my current parasthesia issues were caused by MTX but as I also suffered from a disgusting taste for the 20 months I took it for (oral and injectable) - which is listed as a very rare side effect too - I would feel very reluctant to risk going back on it whatever he says! Mat x

daffy2

If your sister has been seen by the dentist then I think teethgrinding can be ruled out - it was the dentist who picked up that my mother had a problem that needed to be monitored.Another thought is zinc, as that is given to patients with sore mouths from cancer treatments.
I am sorry to hear of your GP's unhelpfulness re Vit D etc. If you haven't already done so you might find it useful to contact the National Osteoporosis Society(this is the UK version which hasn't got such an active forum as the US one but is better for initial info) for more info and perhaps to speak to one of their Helpline nurses. You have several factors which should make your GP take more notice, and it is possible that AdCal is not the best solution for you until your Vit D levels are OK. I had a fair amount of to-ing and fro-ing with my GP about supplements etc and with his agreement now buy OTC VitD(Boots' promotions have been useful) as it is at least 75% cheaper than the prescription AdCal and I didn't need that much calcium nor in that form.
My DIL is a junior doctor in a London paediatric dept and says that cases of rickets are pretty common, and increasing, among their patients.

Trugirl

Hi again Mat,
Of course you said at the start the pain is in your sister's mouth not on, silly me! sitting here with lips on fire though I can only empathise. I mentioned Burning Mouth syndrome though. I wonder if the two of you have read about it. It is quite a miserable condition to have and does seem to affect women around the menopause or during stress ( not that I'm suggesting that for your sister but GPs often seem to attribute so much of our pains and discomforts to anxiety and stress... although her GP seems very good) or sometimes it's a result of dental problems.
As you say her inflammation is quite high and as mentioned inflammation can affect the jaw and maybe result in referred pain.
Hope you also have some resolution for your problems too. The cold weather is affecting me but you must be even colder where you are.
Take care x

Mat48

Thanks Daffy. The thing is that my GP suggested adding calcium because he said I was low for this as well? I find it so frustrating that the doctors won't be more thorough and won't accept that my vitamin d levels should be checked regularly? I will see how I go over the winter and then see the third GP in the practice and explain to him why I feel I should have this checked once a year. I really don't want to develop osteoporosis as well. I have never had a fracture but do feel a lot of aching bones these days - not just joints. I will see what rheumy says about my sister and if non committal or not rheumy related then I will tell her about zinc.
Mat x