Sticky Blood-Hughes Syndrome Support

Sjogrens-just how dry can your mouth get?

I've long been diagnosed with Hughes and the man himself added mild Sjogrens a few years ago. At that time I was having dry eye problems and I have artificial tears for this. For quite some time now I've been having problems with a very dry mouth and throat which sometimes leads to great difficulty just swallowing. I also have frequent problems swallowing food. Several CAT scans have been done for this and other reasons to do with problems with a general anaesthetic and there is some damage lower down in the throat but this isn't accounting for the swallowig issues and dry mouth. I'm going to have a barium meal x-ray soon.. At times I can generate some saliva, at others I need a sweet or something to drink. The fear of choking causes me considerable concern-and i'm not great company at a meal when I cannot swallow something and need to move it!! I take nothing for the Sjogrens at present, do have artificial saliva but could get through a bottle in a couple of days quite easily. As it is I try to carry water and have some citrus sweets on me. The dry mouth wakes me after a few hours sleep and I ned a couple of mugs of something to feel comfortable

Question. Is this degree of dry throat and mouth common for Sjogrens and does plaquenil help/

Many Thanks in anticipation.

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Hi there,

i have hughes, lupus, sjogrens and raynauds.

I can fully sympathise with you over the dry eyes and mouth, it is terrible.

Eye drops really help but don't stop the dryness.

As for your mouth have you spoken to your dentist?

Unfortunately my dentist is about much use as a chocolate fireguard . My teeth are falling to pieces due to the lack of saliva, which means you can't fight the bacteria in your mouth which causes your teeth to rot.

However my rheumy has just prescribed me Bio-tene gel - it is wonderful. I have also been referred to the max fax unit to see what they can do.

I always carry a drink with me, chew a lot of sugar free gum, and suck on mints and fruity sweets.

Don't give up home, there is help available.

Good luck :)

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Hi,

I agree with what's been said. I have a gel prescribed for night time and always have a bottle of water at my bed-side. Travatan helps my eyes as I also had intra ocular pressure.

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Thanks both of you for the helpful comments so far. I'm fortunate to have an understanding dentist and I'll raise the question the question of gel next appointment. She already prescribes special toothpaste and mouse wash recognising the additional issues Sjogrens brings toothwise.

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Hi

My mouth gets so dry my tongue sticks to the roof of my mouth it's horrible yet @ times I choke on my spittle I have to now have a bypass op on my right eye due to tear duct blockage I do not want this op as I am on warfarin and to be honest isn't our lives bad enough I use tic ta-cs to moisten my mouth as if I drink to much you know what happens next lol good luck sweetie x

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Thanks Taffyduck. On the op side, I had to have a hole in the heart closed and came off warfarin for three days prior- but immediately onto heparin drip until a few hours before op, then straight back onto warfarin but remaining on heparin jabs until normal INR achieved. A tedious business but the only way I'd let them do what I, and they, judged was necessary. None of this stop three days before and no heparin rubbish. Best wishes.

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Hi Tim

I hear from a lot of patients with both Hughes and Sjogrens - it seems that Sjogrens can get worse the older we get :( and can conflict with antibiotics (no one seems to tell you about that) and can cause major dental problems due to the lack of saliva.

Have you been in touch with the BSSA: bssa.uk.net/ at all? They only answer calls between certain times and (I've been told) can be a bit difficult to get hold of but once you do they can offer a mine of Sjogrens information.

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I have just had a major antibiotic reaction whilst treating an infection.. followed by an infection in my mouth, which certainly fits with what you are saying above, the young doc i saw at the walk in was most knowledgeable about it all, which was most pleasing, and with my combination of things was quite shocked that I had not been an in patient anywhere since 1999!

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Hi Kate

Well I fit the first three categories sure enough, have Hughes, Sjogrens and will get a pension this year! Do pretty well a lot of the time without antibiotics. By chance I had a drug review with my pharmacist today. Some of the many drugs I'm on may well cause/aggravate the dry mouth and throat etc but I do rather think that, when you add tiredness and joint pain in, Sjogrens seems a strong contender as the drugs have stayed constant as the dryness has got worse. I've had a look at the BSSA site and got some good ideas from there, indeed one of the suggested brand of gels/toothpastes and mouthwashes was also suggested by my pharmacist today. I will try and ring the BSSA for a chat though.

Many Thanks

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I am on plaquenil and still get the dry mouth and dry eyes. I use the biotene toothpaste and the biotene gel at night which helps but I still need to have a drink and replenish the gel during the night 2-3 times, so having both next to your bed may help. You can also get a biotene gum.

The dryness may be one part of the swallowing issue but you might also consider a referral to a gastroenterologist to see if reflux may be causing scarring of the osephagus. I had silent reflux which was doing that. Had an op to stretch the scarring but still have the swallowing issues so probably need to go back again.

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Thanks Tassie. I've seen a senior ENT man recently after several CAT scans and my throat isn't perfectly formed, and another consultant described scarring from previous GAs, but the latest says that is not causing swallowing difficulties -though may account for general anesthetic issues I've had. Suggests it may be some of my IBS drugs in part. It's much easier at the moment, like many symptons, stuff comes and goes. I think I'll ask for some of the biotene preparations when I discuss all with my GP.

Thanks ;-)

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Hi folks. I have Sjorgrens among other things. Sometimes my mouth goes so dry I literally cant move my mouth or tongue to speak. My tongue feels like its made of wood and every part of my mouth is dry as a bone to the touch. Other time I have some saliva and am more normal though still have a job to swallow. My voice has also become hoarse. My lips crack and I can never blow my nose...its too dry inside. Just been to different dentist. Another tooth broke and huge filling fell out. She said I should always have my dental treatment at hospital and has referred me. She put a temp filling in.

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Do you also have very dry eyes with your Sjögrens?

Best wishes from Kerstin in Stockholm

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Yes..dreadful. that was my first symptom. Had that for years. Have 3 lots drops and gel. Very painful...mouth joined in the fun next..then throat.....Iv had double vision for nearly 2 years too...

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Dolly,

You say you have "double-vision" ......... you also say you have fibromyalgia.

I wonder now if you have a Specialist of autoimmun illnesses who knows that Sjögrens often go parallell with APS/HS (the illness we have on this platform).

People who know these illnesses very good, often say, that Fibromyalgia can be a hidden Thyroid-issue and therefor, if I were in your shoes, I would ask my Doctor today to do all the tests for Thyroidea not only TSH but also Thyroid Function Test, TT4, FT4 (all of them).

I had "double-vision" and that was because of TIAs or micro-clots but they are gone with Warfarin now.

Hope you look for a Specialist who can help you with all of this!

Kerstin in Stockholm

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Very kind of you to tell me. However in 2010 i was diagnosed with underactive thyroid and iv been on levo thyroxine for 7 years. Double vision can be a symptom of ms too. Ive got hosp eye clinic appt on 6 nov and referral to hosp dental clinic. Watch.this space!!! Xx

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Please get a Specialist of autoimmun illnesses!

Double vision can have different symptoms but I think you should do a test for HS/APS as soon as possible. Do you have other neurological symptoms and why do you talk of MS? The Neurologists do not get what APS is about - too thick blood!

Dental clinic? Why

Kerstin

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Not having enough saliva causes decay and cavities. Another piece of tooth broke of and huge filling fell out. The cavity is extremely deep and tooth fragile. Could be a minor op or stitching up job. Ive been having incidents of my legs giving way under me so i fall therefore i query ms. I will google hs..aps. its hard for me to keep typing..cant focus. Best wishes. Take care

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Dolly,

See a Specialist for Hughes Syndrome/Antiphospholipidsyndrome (a doctor who knows autoimmun illnesses like a Rheumatologist or Hematologist and do the bloodtests. Can be very important for you!

Best wishes to you

Kerstin

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Hi Dolly,

How did it go today at the eye-clinic?

I am sure you must have a Specialist of autoimmun illnesses! I am sorry if I have said that before but I insist on it now.

It can change your life to the better.

Kerstin in Stockholm

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