CAN ANYONE HELP: Mum had lupus and her sister both... - LUPUS UK

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CAN ANYONE HELP

Lucieb01 profile image
17 Replies

Mum had lupus and her sister both since died, I am labled UCTD, My daughter was diagnoised with sjorgrens, I went to dentist as my teeth are loose & grumbling and she asked if I had any other illness anyway I have to get all my top teeth out , Is this caused by any of the above or something else thx for reading & reply if any

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Lucieb01 profile image
Lucieb01
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17 Replies
Purpletop profile image
Purpletop

Sjogrens could be the culprit, as it dries the saliva and your mouth doesn't have enough protection against germs as a result. Plus - the saliva is full of calcium and bathes the teeth, so a reduced volume of saliva means less strengthening activity as not enough calcium.

Try to use artificial saliva drops, eat lemon, chew gum and use an enamel strengthening toothpaste in the meantime. So awful when our teeth crumble and we have to go through the pain of removing them and then the discomfort of dentures 😩

Lucieb01 profile image
Lucieb01 in reply toPurpletop

Thx Purpletop I am still in shock

Purpletop profile image
Purpletop in reply toLucieb01

I can well imagine, it is my nightmare.

Bebe76 profile image
Bebe76 in reply toPurpletop

I agree with Purpletop, it could be due to dry mouth from Sjogren's. I use Biotene products which contain xylitol. Try to use sugar-free gum. Acidic food/drink also soften enamel. I go for a cleaning with the dental hygenist every 4-5 months and floss daily and this has really helped reduce the number of dental caries. If you do have dry mouth/eyes it's something you might want to bring up next time you see your rheumatologist as he can check for Sjogren's.

Lucieb01 profile image
Lucieb01 in reply toBebe76

Thx Babe I have dry eyes & mouth I use eye drops/ and spray for my mouth

baba profile image
baba in reply toLucieb01

I was advised, by an oral surgeon, that glandosane saliva spray is not recommended if you have your own teeth.!

It will no doubt be vitamin and mineral deficiencies. Vitamin c is one example that in low quantities in the body can cause tooth loss. Every illness usually stems from the gut (where our immune system is). Low stomach acid can cause deficiencies. Work on improving gut health with a clean diet. Think paleo. You may need hcl and probiotics. Take ionic minerals and wholefood vitamin c supplements Good luck x

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to

Hi Hidden , there is currently little evidence to support the theory that a porous bowel ("leaky gut") is the direct cause of any significant, widespread problems.

There is also little evidence that the "treatments" some people claim help to reduce bowel "leakiness", such as nutritional supplements and herbal remedies, have any beneficial effect for most of the conditions they supposedly help.

Lucieb01 , the only diet recommended for people with lupus is one that is healthy and balanced. We have a guide for lupus and healthy eating which you can view and download here - lupusuk.org.uk/wp-content/u...

A paleo diet is not recommended because large amounts of red meat are associated increased heart-disease and cancer risks (which are already greater for people with lupus. In addition, it includes insufficient levels of calcium and vitamin D which are needed for good bone health (which is important if you are on steroid treatment - and would be needed for your teeth).

Please check with your doctor before starting any alternative treatments, diets or supplements. What works for one person can potentially be harmful for another. It is important to get individualised advice about any potential repercussions for your health or interactions with treatments.

There is evidence. Functional doctors have written about their success with treating patients in this way. The pharmaceuticals will not invest in natural cures as it isn't profitable. Hence, lack of research/trials. It doesn't have to be constant red meat. Lots of green veg etc is calcium rich. It's helping me personally. Read the books the calcium lie 2 by Doctor Robert Thompson, The Wahls protocol by Dr Terry Wahls, Why isn't my brain working by Dr Datis Kharrazian. The list goes on. My advice would be to also get a functional doctor.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to

Hi Hidden ,

'Functional medicine' is not a scientific practice and does not have sufficient clinical evidence to support their claims. I would urge caution to anybody with lupus who seeks their advice and would recommend they also discuss it with their consultants. I would like to advise you that I don't want any further debate on this topic here because it is distracting from Lucieb01's question.

Cann profile image
Cann in reply to

My teeth crumbled and I have a denture, but they started when I was very young and although attending dental surgeries throughout childhood and still do, the dentists didn't know why except accusing me of not cleaning my teeth adequately when I am meticulous!

I quite agree with you and those who discredit the more natural approach are often those who are brain-washed into believing drugs are the be all and end all.

Drugs nearly killed me and made all the symptoms worse.

I use diet and a life-style change that suits me.

We are all different and we have to find what works for us.

Homeopathy helped me enormously and now the NHS has cut it out; a brilliant practice growing in use in other parts of the world especially in India. It has been used for hundreds of years and treated such diseases as cholera successfully.

The reason given for discontinuing it in this country is that there is no scientific proof it works, but there are millions of people who have been helped by it and furthermore, there is no scientific proof that consciousness exists or how it works, but it does! We all know the real reason is that there is no money in it whereas there is in drugs.

I have talked to consultants and few understand the problem because the immune system is such a complicated mechanism. One consultant gastroenterologist suggested I continue the route I'm on because he felt that any further invasive, toxic treatment could just makes matters worse.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toCann

Hi Cann,

I recognise that everybody is different and there are some people who cannot tolerate certain treatments and may unfortunately experience adverse effects from them. I would recommend that somebody speaks with their doctor about the best course for them and if they recommend treatment, that they give it a go. It is prescribed because in the majority of cases it is found to be safe and effective.

Diet and lifestyle are very important for everybody but as I have said, it is important to be cautious and seek expert medical advice before making any drastic changes or starting alternative treatment.

Lucieb01 profile image
Lucieb01 in reply toPaul_Howard

Thx Paul I will take this on board

Cann profile image
Cann in reply toPaul_Howard

I agree, Paul, if you can find that expert advice - Unfortunately, I couldn't and that is why I had to seek alternative help or I would have died. I know there are many like me and from the attendance at the homeopathic hospital before it was closed, which I attended, many others have had experiences similar to mine.

Nonanona profile image
Nonanona

I have sjogrens and have been told to keep my mouth moist byou using hard candies to suck on and brush and floss diligently. Also see the dentist every 3 months. So far, so good

Good luck

Jo_25 profile image
Jo_25

That's was me, :( I got all my teeth removed.. Still in search of getting dentures or implants. I want to eat. I hope it goes well.

Lucieb01 profile image
Lucieb01 in reply toJo_25

Thx Jo iam in total shock and nerves

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