Sjogrens symptoms?

[Caramia64]

I have had a really dry nose with ulcers that crust over for the past 4 months, really painful. I also get occasional mouth ulcers. My optician told me too that I had really dry eyes and recommended ointment to get for them which I have , can't recall name but its slippy and awkward to apply. My eyes are often really gritty , scrape against my eyelid, the tear ducts crust over , but when I am in the cold or sun my eyes stream , looks like I am crying ! I have also been getting terrible headaches which I wonder are due to my sinuses? I have post nasal drip during the night. Anyone else had similar and what helped as I am only on Hydroxy....?

[Mandypandy1969]

i have a fair few of your symptoms. i have been on mycophenolate for 2 weeks. only 500mg at moment to see how i go. have to have blood tests once a fortnight. i have blurry vision episodes nearly everyday and dizziness aswell which g.p. is concerned about but got an appointment with e.n..t end of march. i get a lot of headaches bit always suffered with migraines. i have fibromyalgia also. xx

[Caramia64 in reply to Mandypandy1969]

i also have balance problems and dizziness, but not sure if lupus / sjogrens or post brain tumour removal! Neurosurgeon doesn't think its my ears but post tumour .

[Chanpreet_Walia LUPUS UK]

Hi Caramia64,

Oral/nasal ulcers are a symptom of lupus and affect around 45% of people with lupus. We published a blog article on 'coping with oral and nasal ulcers' which you may find helpful - lupusuk.org.uk/coping-with-...

Experiencing 'grittiness' of the eyes is a symptom of having 'dry eyes'. To find out what you can do to help treat dry eyes, read our blog article at lupusuk.org.uk/dry-eyes-and...

To read our blog article on coping with headaches and migraines, visit lupusuk.org.uk/headaches-an...

Hope you find these information links helpful!

[Hidden]

Sounds more like sicca than full blown Sjögren’s to me - but then this is my main disease so it affects every part of me -similarly to Lupus. There would be no other treatments than Hydroxy that you would be offered for Sjögren’s anyway unless it was also affecting your glands or organs.

I would recommend Hyloforte preservative free eye drops at regular intervals and Vit A POS for overnight. Also, if your optician mentions Mybomean Gland Disease/ blepharitis then you will find reclining with a warm eye mask for 15 minutes daily very helpful followed by a lid massage. This helps open up the Mybomean oil producing glands often affected and causing the grittiness.

For nose ulcers Naseptin cream really helps mine and some coconut oil for when the inner lower nostrils are dry and cracked is also good.

For mouth ulcers I find Bongella good but also, if your mouth is dry you could ask your GP for Salivix salivary stimulants.

All these should be available OTC or by prescription if your GP agrees you have secondary sicca or if your rheum diagnoses full blown Sjögren’s.

[Mifford in reply to Hidden]

Hi Twitchy. Sorry to hijack this thread but when I was first diagnosed I had the funny eye test thing with the blotting paper in my eye (not in a rush to do it again as it freaked me out!) and the consultant showed my diagnosis as negative for sjorgen’s but did diagnose Sicca symptoms. I’ve never yet been able to find out much info on it or whether there’s specific symptoms or treatments I should be looking at etc. I get the nose ulcers too so guess that’s what causes that and will see if I can get some naseptin. I’ve also had blepheritis a number of times with my eyes but the chemist just gives me antibiotic/allergy eye drops otc and that seems to work. Do you know of any other resources I can look at relating to sicca or any hints and tips? Knowing me I’m just looking in totally the wrong place!

Mouth ulcers I agree bonjela works as well as anything else. Someone recommended iglu to me but I found it just dried my mouth out more and I didn’t get on with it but I know they swore by it. I get so many my doctors prescribe the equivalent of corsodyl mouthwash for me to help with them. They also prescribe a corsodyl mouth spray when I need it. It doesn’t do a lot to stop them while they are there but using it seems to lessen the severity and noticeably speeds up the healing process to shorten the attack. I get ulcers on my tongue as well as my cheeks and (worst of the lot) over my wisdom teeth and the spray really helps with my tongue where nothing sticks to it and getting right into the hardest to reach ones. It can be bought otc and I’d definitely recommend giving it a try then seeing if you can get it prescribed if it works for you.

Again sorry for hijacking x

[weathervane]

Hi Caramia , i also have Sjögrens and i agree with everything that Twitchy has said, i also find a saline nasal spray like sterimar morning and night helps , it has no chemicals and can help to keep nasal passages moist and helps sinus symptoms. I hope you get more answers soon, best wishes 🌸

[DJK99]

Hello again - I these issues too.... and as prescribed by Eye Hospital, I have Carbomer for night time - which is great - no more eyelids sticking to eye balls! And Hylo Forte for daytime... you can get them all on presecrition. Life changing! If you are spending a ton on your meds its best to pay for a certificate thing.. £10 a month was much better than the amoutn I was starting to pay regularly! I get the crispy nose all the time too - look like I have a raging coke addiction as constatnly running. Tell your rheumy everything.. down to the last detail - I wrote him a numbered list of my symptoms past and present in an email prior to each appointment - he loves them! They put it on your file and its there for all to see, essential. The nose sores seem to be better the more rest I get - stress brings themon - and mouth sores... flares...... I wear glassesin the outside all the time.. r people look at me as if Im crying.. and forget make up! halfway down my face the whole time;). Also - I drink water all day - ie every 15 mins another glug... tap water is fine and better than out of a plastic bottle. makes a huge difference to everything including the headaches... mind you, whislt I was working, nothing helped - not even pain meds.. Oh and the Salivix pastilles really helps too.. but water water water is the best thing ever. I do hope you can stop working in time...if thats what you want... these issues will become less and less I hope. For now maybe see your doc about beign signed off for as long as you need... eh? Take care, D x

[Caramia64 in reply to DJK99]

I know what you mean about make up , have also had to give up on that !

[Poshcards]

Hi, I get the nasal problems, I use Vaseline up my nose all the time, it keeps it moist and helps with the 'scabs'. hope this helps xx

[chrisj]

I was prescribed Naseptin by a doctor in ENT at the hospital when my nose became dry and sore from the salt in a saline spray. It was very effective, has peanut oil in it. I also buy vaseline for when my nose is very dry to keep it lubricated, it scabs inside and its painful, bleeds a bit and takes some days to settle down, then comes back again...I use the spray very rarely these days but it does help a little.

I have Sjogrens, dry mouth, dry nose and eyes, mild SLE as well for which I take plaquenil. I was prescribed eye drops but didn't get on well with them so I bought Optimist which is expensive and I got some much cheaper eye gels as well. Do hope you find some relief xxx

[Mifford]

One other thing for mouth ulcers, I remember reading on here a long time ago that colegate creates more of them. I don’t know what the basis was but I tried aquafresh for a while and found my mouth didn’t seem to be so dry so switched permanently. I can’t say I’ve noticed a significant difference in ulcer frequency but it may be worth trying a different brand if you always use the same one to see if it helps for you.