PMR -Dry Mouth-Sjogrens Syndrome

[hiandri]

Hi All,

Just when you think you are doing okay life throws you a curve ball! I was diagnosed with PMR about Feb. 2017, started on Pred 15mgs on 1 April, over did a gym session and paid the price, no more gym and still on 13.5mg.

Visited my dentist today for my annual check up. She is very good as are my teeth which I have spent a fortune over the years looking after! She noticed an immediate change in my mouth with a much greater build up of plaque and decay in two root systems under crowns, highly unusual for me. She noticed that my mouth was very dry and I advised her I had been experiencing dry mouth over the past say 3 months, dry eyes and a hoarseness in my voice. These symptoms are not side effects of Pred and to my knowledge not PMR symptoms. The dry mouth means minimal saliva is produced which naturally controls the bacteria and acid levels in the mouth, without it the bacteria and acid can quickly attack the teeth and roots, if drastic steps are not taken to manage this problem.

Her immediate reaction was, that I could have Sjogrens Syndrome, which is another auto immune condition not dissimilar to PMR, worth a google - a bit scary!! The only control for the dry mouth is chewing sugar free gum to help produce saliva, thorough cleaning of the teeth with high fluoride tooth-paste 3 times a day, and flossing, to minimize bacteria build up, not to mention lot more regular visits to the dentist to remove plaque build up and stop decay early.

My CRP and ESR have always been normal, I had a test 2 weeks ago and my CRP was 1.0, ESR was 8.0 - is it possible I may not have PMR and have had Sjogrens Syndrome from day one? Obviously I could have both. Have an appointment to see the doctor tomorrow to hopefully organised some tests to make a definite diagnosis. Like PMR, 90% who get it are females, 10% males. Any comments or advice on this condition or anything I have mentioned, would be much appreciated. John (NZ)

[sazzyb]

Hi John, I was diagnosed with Sjogren's about 10 years ago, by my optometrist. My eyes are the most affected. For what it's worth my blood tests are always 'normal.' I said to my GP yesterday if ever anything shows I'd fall off my chair in front of him in amazement. My tests for PMR were 'normal' but I keep reminding myself that tests are only a guide. My GP is giving me a trial of pred for 2 weeks and I'm so happy that it seems to be working even after 1 dose. The old saying is, you get 1 autoimmune disease, you get 7!

[hiandri in reply to sazzyb]

Thanks sazzyb, I haven't heard that saying, something to look forward too! NOT.

I don't really understand why after 10 years you are just trying Pred unless PMR symptoms have only recently appeared? John

[sazzyb in reply to hiandri]

Hi John, yes, PMR symptoms only appeared about 18-20 months ago I think.

[SheffieldJane]

Hi John, I was diagnosed with PMR in early 2016. I have reduced to 6 mgs Prednisalone. I have had dry eyes for years. I have noticed my dry mouth symptoms worsening of late - only experience this symptom at night in bed and have been prescribed a dry mouth spray. My dentist has not commented on any deterioration in the state of my teeth. Mind you yours sounds pretty special! I do take care of them and see a hygienist every 6 months. Odd about the hoarse voice. Mine is hoarse in the mornings and when I try to sing to my grandchildren it is pretty dire. I never put these symptoms together. Assuming side effects of various tablets like Atenolol for blood pressure. In a past life I smoked I assumed that I'd wrecked my voice. Then the dry eyes have always been associated with exopthalmic goitre from my Graves Disease. So I have the hat trick too. I am under a Rheumatologist who specialises or has a particular interest in PMR GCA and she's never explored any alternative to PMR with me.

You could indeed have both conditions as could I. Please let us know how you get on. My feeling is that my condition has really improved over the months just with Pred. I am now going to research Sjogrens 🤔

[hiandri in reply to SheffieldJane]

Hi Sheffieldjane,

Thanks for the reply and the comments. I have huge faith in my dentist who I have had for 20 years, she knows her stuff! As I mentioned in my post, do not under estimate the negative effects that the loss of saliva in the mouth can have, the build up of plaque and decay can happen quite quickly and should be specifically checked by your dentist. I found an australian healthunlocked site especially for Sjogrens you may wish to explore. regards John

[SheffieldJane in reply to hiandri]

Cheers John!

[venezia1]

I have had Sjogren's along with RA, GCA and now coeliac for some years. The dry mouth and dry eyes are an ongoing problem which I deal with in many of the ways you mention. However, the phrase " a lot more regular visits to the dentist" did raise my hackles - my dentist recommended I see him every six months for a check up, but was in no way alarmist, and I do wonder whether yours is taking advantage?

I've lost one tooth and had several fillings over these years, but at 71 I still have a reasonable set of choppers! My message is simply that in my experience it is a nuisance, but the main thing I find difficult is the additional fatigue arising from all four of these auto-immune conditions.

Good luck with your further investigations.

[hiandri in reply to venezia1]

Hi Venezia1,

No, my dentist would never take advantage of me, if she was that sort of person I would have changed dentists 19 yeas ago! She was alarmed at the deterioration in my mouth over the past 9 months, I told her had been diagnosed with PMR since I last saw her, she then asked me questions about dry mouth and eyes. Her mother has had PMR for 15 years so she is familiar with the condition plus she has had about 3 patients with Sjogerns. What she said to me about saliva, acids and bacteria just sounded like common sense to me and the decay in two of my teeth confirmation of what she said. In regards to seeing her more regularly, that was really my suggestion as I wish to avoid any plaque build up and if there is decay, catch it quickly . Regards John

[Amkoffee in reply to venezia1]

I kind of got that same vibe. But I was also a little disappointed in my own dentist and eye doctor for not having mentioned the disease to me when all along my eye doctor was treating me for dry eye and my dentist was treating my teeth and my dry mouth as if it was nothing. It was not until someone mentioned Sjogren's to me on one of my Facebook groups that I became familiar with the disease. So I mentioned it to my rheumatologist and we did a blood test and it came back negative. So I do not have a definite diagnosis because I refuse to do the lip biopsy. It really doesn't matter if I have a diagnosis are not the facts are that I have all the symptoms and with Sjogren's all you do is treat the symptoms anyway. So I am now on Restasis for my eyes and I got plugs put in my lower tear ducts and my rheumatologist has tried two different medications for dry mouth but I couldn't take either one of them. One of them may me nauseous and the other one had very little effect on my dry mouth and cost me a lot of money. So I told her I'd rather just suffer the dry mouth then pay that kind of price for that small of a change.

[hiandri in reply to Amkoffee]

Hi Amkoffee,

Try sugar free chewing gum to help produce saliva, I have found that a good option. John

[suzy1959]

I have suffered from dry mouth ever since starting the Pred. and it got worse when I started taking Amitriptyline as well and even worse again when I had to take co-codamol, so I see it as a common side-effect of these ( and many other) drugs. Dry eyes too when I am on higher doses of Pred. Strangely, my gums have been in better shape since being on the Pred. and I have had less plaque etc.I have concluded that the Pred. is reducing any inflammation, including any in my gums! When the dry mouth has been really bad, the only thing that has helped has been chewing gum which I don't like much but does work.

[hiandri in reply to suzy1959]

Thanks suzy1959, it seems that there can be many different responses, I guess we are all on a big learning curve. Regards John.

[Hidden in reply to suzy1959]

I cal it tortoise mouth...waking up in the middle of the night trying to unstuck tongue from top of mouth. I have diabetes too which plays havoc with teeth...prrd increases it too. I have used mouth sprays etc. My solution now is disgusting habit of a gulp of water and toothpaste gargle and gush and spit a couple of times a night when I go to loo. I tried mouthwash but wasn't same. I use the repair type toothpastes..I also use interdental brushes after meals and brushing and superfloss which is primarily for bridges and braces but I find it's gentler of gums. I have greatly damaged teeth grinding and through family trait of hanging on to a few milk teeth with no adult ones coming along. Try to keep ones I have left. 😆

[SheffieldJane in reply to Hidden]

Do you know Poopadoop, I thought you were an American for a while for some reason. But you are a Yorkshire lass aren't you? 🐢🤗 or at any rate from round there/ here.

[Hidden in reply to SheffieldJane]

Yes. Yorkshire born and bred and with boundaries changes I have managed to stay in Yorkshire lol. A westie by birth but a southie at heart.

[SheffieldJane in reply to Hidden]

Why on earth did I think you were American? It must be the Poop part of your name. But you give yourself away with your hilarious attitude to adversity.

[Hidden in reply to SheffieldJane]

Great believer in humour as healing tool and that I am a lucky person to maintain a sense of humour in darkest places.

[SheffieldJane in reply to suzy1959]

Snap Suzy. I am on Amitriptylin 10 mgs to promote sleep and the dry mouth occurs only after I've taken it and am in bed. I have looked up Sjorgens, it has some commonality with PMR. Perhaps I can drag my chin off the floor and press on now.

Still knowledge is power, I'm glad John raised it and I will mention it to my GP if only to see the glazed look again. They are a bit po faced about the letter my Rheumatologist sent about my not requiring Alendronic Acid because I am in fact a spring lamb.

[hiandri in reply to SheffieldJane]

Hi Sheffieldjane,

Just an update. Saw my doctor a couple of days ago, she is also familiar with Sjogerns and knowledgeable on PMR. Had another lot of blood tests done CRP 1.0, ESR 5.0 and all my bloods normal or only slightly above normal on one or two. This has been the same since I first began getting symptoms close to a year ago. Good but frustrating all the same as it is hard to come to terms with something when tests are basically saying you are normal.

Regards John NZ

[SheffieldJane in reply to hiandri]

Tell me about it!!!

[Megams]

Hi John

I have the same issue which more evident since my PMR diagnosis + starting steroids early 2104.

As a consequence see my Hygienist every 3 months without fail. This guarantees me peace of mind as I too have invested dearly on my teeth over the years. I have not required one filling due to her extra vigilance for which I am truly grateful - English trained I might add!

I am missing a salivary gland having a parotidectomy 13 years ago.

Have a chin strap that attaches at top of scalp when I have CPAP mask on at night as mouth drops open during sleep.

I take a glass of water to bed and if I awaken startled at a parched mouth (which happens often) a few sips of water plus tiny bite of a banana to activate salivary gland often helps. I usually manage to go back to sleep as a result.

Would prefer to think dryness highly likely combination of most of the above.

Good luck

[hiandri in reply to Megams]

Hi Megams,

Thanks for the reply. I'm 69 and last thing I want is false teeth as you can well appreciate. I am fortunate as my symptoms are at the lower end of the scale from what I read on this site. I wish you all the best, Regards John

[Rhon-1956]

dry mouth. ( can be post menopause and medication cause ) but bloods and a very not normal response can be tested by specialist. I use Biotene ( I am Australian ) brush my teeth with it. and have a gel to put in my mouth and a spray. I cant chew gum as I have a band on a tooth. but am going to have the tooth out next week. I don't think it is related to prednis. it does not make mine worse.

[Rhon-1956]

I also noticed that tea makes me thirstier. what thirst quenching drinks can anyone suggest ? will I ever feel not thirsty again ?

[HeronNS in reply to Rhon-1956]

Water, perhaps with something in it like a twist of lemon or lime or cucumber slices, to make it taste more interesting. There are also a lot of different kinds of herbal teas which might be attractive to you to drink but are naturally caffeine free. Make sure whatever you choose doesn't have the same diuretic qualities as tea or coffee! Personally I like rooibos because one can actually have a little milk in it like regular tea so I don't feel deprived. Probably good to make it a little stronger than instructed if you are an inveterate tea drinker.

[HeronNS in reply to Rhon-1956]

Ice cubes?