Sjorgrens syndrome

[Jillyanne]

Does anybody else on here have Sjorgrens syndrome, have had it for 5 months, driving me mad.😡😡😡

There seems to be no help apart from mouth sprays and pastilles which do not work

[sylvi]

Yes i do have Sjorgens and i hate it too. My eyes are the worst part as they swell and are dark. My mouth gets very dry as well.xxxxx

[Jillyanne in reply to sylvi]

It's my mouth that's the worst , hate it 😪😪

[Frankiefarr]

I'm beginning to wonder if I have it. Very dry sore mouth all the time and my eyes are gritty. Don't seem to tear up much?

[Jillyanne in reply to Frankiefarr]

Yes, that sounds like it, doesn't matter what you do or drink your mouth is still dry, difficulty in eating certain foods without a gallon of water

[Dawnymat]

I have Sjögren's syndrome too, I had my tear ducts cauterised which has made a massive difference and get the high fluoride toothpaste from the dentist. Saliva spray is ok and hylo-forte eye drops. I also try to use sugar free chewing gum after meals in the day. The worst time is if you get a cold (which is often with the immune system) my mouth is as dry as the Sahara 😩

[Shadows-walker]

Hi I have sjorgrens, and am on Dulxtine , hydrocoquinne, gabapentine, co codomol , vit D. Folic acid , evening primrose, cod liver oil , hair and nail and skin multi vit , eye drops , difflam mouth wash and throat spray , tooth paste from dentist , ranatadine, and gaviscon. All on priscription .

I have found each works on different bits , I have had at one time seven consultants , and they have all played a vital part in helping me function to the best of my ability , I am waiting to take ownership of a NHS wheel chair , I was diagnosed 3 years ago , you must find a decent rumatolgist and have a supportive GP. Also ask to go on a pain and fatigue course and go in with an open mind.

Gentle hugs

Chris xx

[Dawnymat in reply to Shadows-walker]

Are you ok taking gaviscon with hydroxychloroquine Chris? I'm not allowed 😬 xx

[Shadows-walker in reply to Dawnymat]

Well I found it does work brilliantly but the ranatadine is much better , I am in an arwful state without the ranatadine, I will run that past gp next time I see him. I don't have a rumatologist at moment as my old one used to leave me in tears and I tried for 5 years to find a middle ground with him somat moment my gp and I will hobble along. 😊

[Dawnymat in reply to Shadows-walker]

The Doctor tried to give me some once but I remembered the rheumatologist said I couldn't so I told the Doctor and he checked his book and said oh yes you can't have it so he gave me Omeprazole. 😊

[Shadows-walker in reply to Dawnymat]

Thanks my old rumatolgist never said a word. The man was awful 🙁

[Padram]

Hi Jillyanne, I try oil pulling with sesame or coconut oil. Swishing our mouth with oil helps in keeping it moist. I used to do this 3/4 times a day, when my mouth was so dry that my tongue would stick to the upper palate, especially after a night's sleep. Now I do it only once a day. I keep sipping water at regular intervals in the night. This has helped a lot. Through out the day too, I keep having sips of warm water . Mostly it is cumin infused water. I boil water in a pan and add a tsp of cumin. I cool the s water and have it through out the day. Now I also don't get any oral sores any more.

As for eyes, I do use eye drops for dry eyes. Having carrot , gooseberry, beet, cucumber juices helps a lot. My doc was surprised that though I have 2 Auto immune disorders, and my eyes have become dry a little, the damage to the eyes is minimal. She said that I must be doing something right with my diet.

In fact, even my vaginal dryness has become better with a year of the Elimination diet.

I don't take any meds orally.

Hope this helps.

[Jillyanne in reply to Padram]

Hi, Padram can you please explain oil pulling? Never heard of it, please 💖

[Padram in reply to Jillyanne]

Hi, Jillyanne, oil pulling is very simple. Just take a tsp of oil, swish it in your mouth for 2 minutes. And spit out the oil. It is like rinsing your mouth with oil. Best done as soon as you get up, before brushing your teeth. Removes any bad bacteria in mouth too. This is good for any oral problems, especially gum problems.

I brush my teeth only after 1/2 an hr. Normally it is done once in the morning. But since I had severe dryness, I usd to do it 4 times a day.

[Jillyanne in reply to Padram]

Thank you, will give that a go 👍👍👍

[Padram in reply to Jillyanne]

Hi, you can try this simple remedy for your eyes. Read it in some blog, don't remember which. But has to be repeated as and when necessary.

Soak a cotto pad in warm water, and place on eyes. After 5/6 times, soak the cotton pad in cool water and place on eyes. Removes burning sensation almost immediately. Did it two hrs ago, still eyes feel good. No burning sensation.

[Jillyanne in reply to Padram]

Brilliant, thank you 😊

[zeus49]

I've got androgens syndrome and every night I put Caroline in my eyes which is like a Vaseline. I also use eye gels and tears natural nearly everyday. I then gently clean my eyes with warm water and an eye pad to keep them clean. It's a pain but keeps my eyes lubricated. I've also got my eyes plugged to try and keep what moist I've got. Then I have dry nose dry mouth. Someone told me to suck on a pineapple which I tried to no avail. So I got a saliva spray and that wasn't very nice. Now I just drink a lot of water and tea. It's just trial and error. I wish you all the best on this one and hope some of the information helps. Sorry it's spelt wrong it isn't Caroline haha it's meant to be lacrilube ointment. And srogens zeus49. 😃

[zeus49]

I forgot to tell you jillyanne I also get a wet flannel in hot water squeeze it out and put it across my eyes when they're closed of course and just like back and have 20 mins. I found it very soothing. Good luck. Zeus49.

[Jillyanne]

I have tried the sprays and no use, I also sip water and drink tea 👍👍

[Hidden]

I have Sjögren's and have had help from a brilliant optician who asked me to use heated eye pads daily and then use a silicon massager I bought from him. I use the heated pads daily for 15 minutes then massage each eye a bit and apply Artelac gel This has really helped with my Mybomean Gland Disease and blepharitis. I also apply celluvisc, hyloforte and Artelac regularly throughout the day and lacrilube at night. My eye surfaces have sustained no lasting damage yet despite having severe Sjögren's - probably for decades.

I'm on the maximum dose of an immunesuppresant called Mycophenolate and shortly to start taking a make of Viagra for my Raynauds had hypertension - so it's not true that Sjögren's isn't treated. But many only have Sicca Syndrome rather than a ful blown multisystem Sjögren's like mine. There is also a significantly increased risk of developing non Hodgkin's Lymphoma if you have primary Sjögren's so immunesuppression is usually avoided where possible. I am lucky to have a great new rheumatologist whom I met for the first time yesterday.

I was offered a med called Pilocarpine by her for the very dry mouth and airways - but decided go for the Viagra first as the Raynauds and hypertension bother me even more and although Pilocarpine is brilliant for many - it can raise the blood pressure. I don't need even higher BP!