Dry Mouth.

[Haveitall]

For those of you suffering are you doing anything that’s helping you produce more saliva? Not temporary like Biotene products and xylitol. I’m desperate. I don’t have Sjogrens.

[Hidden]

I used to suffer with this and thought it was maybe Sjögren’s but once I had a few b12 shots in my system it eased off and now with my regular shots it’s one of the annoying things I’ve ticked off my list. It’s especially bad if you have dentures it drove me mad,that along with the big sores on my tongue which I also don’t suffer from now thanks to keeping my folate levels up.Do you have regular b12 shots and do you monitor your folate levels? Might be a good place to start for you and bring you some relief hopefully.take care.

[Haveitall in reply to Hidden]

I inject B12 weekly and take sublingual the other six days. I’m also injecting B1 daily and nothing is helping. I take Methylfolate every night. I’m waiting to get labs back.

[Nackapan in reply to Haveitall]

Perhaps look into b6 too

[Haveitall in reply to Nackapan]

To inject? I take B complex which has B6.

[Nackapan in reply to Haveitall]

No tablet form. I'm trying taking it separately for a while .

[JGBH in reply to Hidden]

I have Sjogren’s as well as RA. I have been injected B12 for a few years and whilst this has helped with certain problems it hasn’t helped with a very dry mouth, We’re all react differently, I suppose.

[rogergee]

I had this really badly overnight, and reported that to the GP on a visit two and a half years ago, but since starting the jabs it’s improving daily.

[Haveitall in reply to rogergee]

I've been injecting for over two years now and it started last November and has since become worse. I'm only producing saliva under my tongue.

[rogergee in reply to Haveitall]

That must be really uncomfortable for you. I hope you find a solution quickly. I must say, my GP wasn't interested in it.

[Chance15]

Hi there I also suffer from dry mouth.I cud have a drink water,tea etc. and still suffer from dry mouth.This as been going on for to many years now doc mentioned sergens sorry can’t spell lol.It also affects my speech people not understanding what I’m saying. Which is very frustrating at the least.

[EiCa in reply to Chance15]

Dry mouth is a side effect of many medications, especially “anti-cholinergics”such as many anti-depressants and anti-histamines.

[Haveitall in reply to EiCa]

It’s not medication related. I’m off all antihistamines.

[Nackapan]

Also is your iron status okay .I had a run of oral thrush .

Dry mouth.

Sore guns.

It seemed to improve when my ferritin levels went up ???

[Haveitall in reply to Nackapan]

My last ferritin test was only 16. My doctors don’t agree on what it should be. What would it be in your opinion and how do I raise it?

[Nackapan in reply to Haveitall]

I was told anything below 50 ug/L can give symptoms.

Ferritin should be looked at with all other iron results.

My Gp said no action to s level of 29ug/L even though dropped from 61

My daughters gp ignored a level of 9

Another dsughter was treated with iron at a level of 30 as had symptoms??

I discussed with Gp and she agreed to prescribe iron and the retest in 3 months

In my case the suspected related symptoms went when it reached 42

I now have a low maintenence dose.

Never needed any iron in supplements before b12 deficiency

List symptoms yoh think related and discuss agsin.

[Haveitall in reply to Nackapan]

Do you think I need to have an iron infusion to get it up?

[Nackapan in reply to Haveitall]

I had prescribed iron tablets. J think wise to discuss then get bloods in 3 months

[Barneyboy48]

I am taking PPIs, (Lanzaprozol). I have a B12 deficiency that is almost certainly caused by this preventing the acids in my gut breaking down the foods containing the necessary vitamin.

My wife, who apparently does not share my problem, is also having to take PPIs for an acid reflux condition.

We both suffer from dry mouths and I can only conclude it is the side effect of the PPIs.

My wife's consultant has advised chewing gum. Daft as it sounds this encourages saliva production which solves the dry mouth problem somewhat. Chewing gum also has the added advantage of helping prevent tartar on your teeth.

[wedgewood in reply to Barneyboy48]

I can only say be very wary of PPIs . They annihilate stomach acid , which is needed so the vitamins and minerals in food can be absorbed . Low stomach acid occurs when we are older or have P.A. . Low acid prevents the oesophageal Sphincter from closing properly , resulting in the burning sensation called acid reflux ( when acid is high, the sphincter closes completely) Having P.A.causes low/no stomach acid— Hypochlorhydria/Achlorhydria.

What can help if the acid is very low, is taking Betaine Hydrochloric Acid with pepsin capsules .Best taken with advice from a nutritionist .

[Haveitall in reply to wedgewood]

I don’t take PPI’s. How would I know if my stomach acid is low.

[wedgewood in reply to Haveitall]

Well it’s an established fact that if you have Pernicious Anaemia , you will have low stomach acid , as the Intrinsic Factor Antibodies that PA patients produce , destroy the Parietal Cells in the stomach . These cells produce not only the protein called The Intrinsic Factor , but also the stomach acid which can be called Hydrochloric acid . Both of these are required for the absorption of 12 . Hydrochloric Acid is required for the absorption of all other vitamins, minerals and trace elements in our food A gastroenterologist told me about the low/no acid of PA patients. My GP had never heard of it . So your GP does not test you to see if you have low stomach acid . It can be done by a gastroenterologist, but it is an expensive procedure.m, and rarely used .

Low acid can cause awful stomach ache and bloating because the bad bacteria which we all have in our stomachs , is kept in check by stomach acid . Without a good supply of acid , bad bacteria takes over and causes gut problems .

Many PA patients take an acidic drink like diluted organic apple cider vinegar, or lime juice with meals , to help with vitamin and mineral absorption. ( but doesn’t help with B12 absorption because of no intrinsic factor . )

But many elderly folk without PA tend to produce less stomach acid as they age .

I haven’t really answered your question totally . We all know that Pernicious anaemia is a “cinderella” illness , and we have to look after ourselves to make sure we stay well . Because the medical profession is mostly ignorant about it .

[Haveitall in reply to Barneyboy48]

I've been chewing gum for the past 8 months and it doesn't help.

[Hidden]

I had this before and after diagnosis of PA. The DR tried artificial saliva which was a complete mistake. I found a boiled sweet, or I think you would call it a hard candy, worked wonders. The diabetic ‘sweets’ just made me fart copiously. The boiled sweets still work.

[Haveitall in reply to Hidden]

What’s artificial saliva? I’ve never heard of it. Sucking on candy is temporary.

[Hidden in reply to Haveitall]

Compared to artificial saliva then a hard boiled sweet lasts an age. It was, in the form I was given it, an oval flat lozenge which you popped on your tongue and allowed to dissolve in your mouth. In my case is was totally useless, it did nothing. Having had this problem now for over ten years I still go for the sweetie when my mouth is dried up. Taking it to the medics merely results in a blank look and a change of subject.

[Showgem]

I have this and also dry eyes. My GP prescribes eye drops and gel for dry eyes. He did a blood test for Sjogrens but I was negative for the antibodies to confirm a diagnosis. I drink water during the night and always drink something when eating dry foods or I start to choke, I don't know of anything that really works, sorry!

[Haveitall in reply to Showgem]

I don't have try eyes. I've been tested for Sjogren's twice (antibody and early panel) and both were negative.

[rogergee in reply to Haveitall]

Oh yeah, I had really dry eyes too. Similarly, the GP wasn't interested. They've also improved since treatment.

[Hidden]

Try looking at increasing vitamin A.

"Sometimes in early Vitamin A deficiency people get dry hair, DRY MOUTH,dry itchy, bumpy skin, broken nails.

The most serious problem permanent blindness... Dry Eyes

[Haveitall in reply to Hidden]

I'll increase Vitamin A - I have drops although even while using them I still had this symptom. Zero dry eye or itchy skin and my nails are pretty strong.

[Hidden in reply to Haveitall]

I had the same problem, but I had dry eyes as well, that's probably when first diagnosed with B12 I couldn't cry, once recovered I could not stop, all just came as a relief when I recovered. Now I make sure I eat plenty of things like sweet potato, butternut squash, tuna and mayonnaise and even vitamin A fat.

[TorontoIslander]

I've suffered from dry mouth for years, I believe it's more due to the medication for my heart then PA. So, when it gets bad I suck on Ricola Mountain Herb throat lozenges, I probably go through 4-6 a day. I should buy shares in the company I use so many.

[Nackapan in reply to TorontoIslander]

I use thise when masked

[prillyb12]

Do you have dust and/or pet allergies that would cause to breath through your mouth?

[Haveitall in reply to prillyb12]

No. I’m not a mouth breather.

[newlandvale]

I was diagnosed by Liverpool University Dental Hospital with Sjogren's (dry mouth and eyes confirmed) but evidence never appeared in blood which left everyone scratching their heads. This is called sicca syndrome and occurs secondary to something else - the elephant in the room - what is that something else? I am on no other medication. Not hayfever tablets, ppi's, painkillers etc as they all cause me more problems than they solve. In addition to dry mouth and eyes, I have dry ears, dry nose, dry skin, sensitive stomach, sluggish bowel and an unexplained gfr. All operated by the parasympathetic nervous system ..... Things started to improve after I started self-injecting B12 (12 years after B12d diagnosis, 8 years after "Sjogrens" diagnosis) but as yet not completely resolved. Probably parasympathetic nervous system permanently damaged.

[Haveitall in reply to newlandvale]

I don't have SICCA/Sjogren's. I was negative both for the antibody and on the early panel so it's not that.

[newlandvale in reply to Haveitall]

I don't have Sjogrens technically - as I said, no antibodies in blood. Sicca is just an all encompassing term which includes any cause not antibody in origin so includes dryness caused by medication or where cause is unknown, In my case it's cause unknown therefore Sicca. My personal belief (not medically trained but reader of Pubmed!) is that the cause is B12 deficiency affecting the parasympathetic nervous system. At Liverpool they called it Sjogrens initially because the dryness was not mild. They even repeated the antibody tests after 6 months expecting the antibodies to have appeared which of course they did not. Dryness seems to be improving with frequent B12 self-injecting.

[lambuth_eagle]

I find that when my potassium dips a bit I end up with dry mouth. I get my potassium (among other things) checked every 3 months and even though it is always in the normal range if it is just a little off then I end up with dry mouth. Biotene mouth wash at night helps, but usually if I just increase my potassium it helps. I drink a ton of water and sometimes if I don't get enough electrolytes in the mix it causes dry mouth too.

[Haveitall in reply to lambuth_eagle]

I'm already supplementing potassium. My ferritin when last checked was really low - I'm going to find a new hematologist for iron infusions.