Information needed please.

[sylvi]

Afternoon everyone,i am after some info about Sjorgens please.

[Hidden]

I thought this link to the British Sjogren's Syndrome Association might be helpful.

Basically, there are two types of Sjogren's, primary, where Sjogren's is the only autoimmune disease you have, or secondary, where you already have one or more autoimmune diseases when diagnosed with SS.

My Sjogren's is very active at the moment, I use preservative free hypromellose eye drops, beconase nasal spray, and glandosane oral spray, but the latter isn't very helpful at all. I chew sugar free gum to try and keep my mouth moist and drink lots of water.

This website also has information about SS:

mollysfund.org/2014/04/sjog...

Hope you find the information you need.

poesmgalore

[sylvi]

Thank you,i have ra and fibro,but i am having a lot of problems with my eyes swelling. They are dark and very puffy and sore. I am thinking i might have Sjorgens as well. Thank you very much for the link i will now go and have a look.xxx

[earthwitch]

bssa.uk.net/ thats the British Sjogrens Association. Sjogrens seems to be both a primary disorder, and a secondary (or milder) version that goes alongside other RD. My doctor didn't actually diagnose sjogrens, but just called it Sicca (dry) syndrome, which kind of makes sense. I definitely don't get the major stuff that people with primary sjogrens get, though what I do get is rather annoying and potentially if I don't look after my eyes, could be damaging.

[sylvi in reply to earthwitch]

Well from what i have read so far today from Poesmgalore i have it and i will certainly have a look at the site you have recomended thank you.xxx

[Hidden]

Whoops, I forgot to add the link for BSSA - where is my brain?

[sylvi in reply to Hidden]

You gave it to me and i have had a look at the site as well. Thank you.xxx

[Ali_H]

Hi Sylvia,

I have RA and secondary SS and quite frankly my SS is more of an issue right now than the RA is.

I have dry eyes which feel gritty and like I have been punched in the eye. They are worse when my fatigue is worse and my eyes are the first indicator of the fact that I have not paced myself well in a day or haven't slept well.

I have light sensitivity and when it is at it's worst I wear shades but they are not prescription ones so I usually stick to my reactalite prescription glasses. I get/have persistent headaches across the top of my eyes and relieve this by putting a warm wheat bag across my eyes and also gently massaging across the top of my eyes. I also struggle to refocus after blinking and at times have to be firm with myself so that I do not spend my entire day walking around with my eyes shut. For some reason it's easier to eat with my eyes closed which has the benefit of focussing my taste buds so not all is bad!!! Needless to say that I choose not to drive at present as it would be too dangerous and I also find crowded places difficult as I miss judge distances and bump into things or people. I still read some but now do more radio play or audio book listening. Computer activity is done in short bursts.

I have been prescribed a gel which is like Vaseline for the eyes called lacri-lube which I apply first thing in the morning and last thing at night (and occasionally in between when things are bad).

My RA was only diagnosed at the beginning of September and my dry eye given the name sjogren's syndrome two weeks ago so I am very early into my treatment but am already managing my eye symptoms more effectively that I was (which basically involved getting frustrated and angry with the situation!!!). I am on 10mg of methotrexate a week, 5 mg of folic acid and naproxen (2 X 500mg a day) for now and my MTX was not put up to 12.5mg as planned because of a complication which may or may not be a med reaction (I am waiting for a pelvic floor scan to clarify the situation) but already my eyes are less intense but I have been off work since September 1st so this will be helping me to control my fatigue and thus ease the whole RA-SS situation.

If you have SS be acutely aware of the dental complications that can arise due to associated dry mouth caused by the saliva glands not creating enough saliva to keep your mouth suitably lubricated. Basically saliva is the first defence against tooth decay and increased dental issues is the norm if care is not taken. My dental hygienist has recommended using low or no flavoured toothpaste and mouth wash to prevent agitating gums and mouth. Floss or use dental sticks on a daily basis and also use an electric toothbrush as they are more efficient. Use a mouth rinse after eating each meal and get teeth cleaned by the hygienist at least twice a year. Any unusual gum bleeding or pain go straight to the dentist.

I have tapped into the British SS site mentioned above but their chat forum is closed to non-members so I tend to visit the Australian SS HealthUnlock forum and get some useful information by brousing their posts (I've not posted on there yet).

I hope there is some useful info here for you as I have found it very useful to talk openly about my SS complication which, until now, I've kept more or less to myself for some unknown reason.

All the best

Ali

[sylvi in reply to Ali_H]

Ali you have described me to a t. I do visit a dentist every six months and it was her that first picked it up. She sent me to the hospital,but they couldn't or wouldn't confirm SS. They did say i have dry mouth. I have a very good optician and he is very good and he has kept an eye on me. Now it will be the drs on Thursday and i am going to show him the photos i have on my tablet of what my eyes look like.

Thank you very much for your comments.xxx

[Hidden]

Oh dear Sylvie, as if you haven't got enough problems already. But I saw your photo of your eyes the other day, and I thought then - that's not an RA flare surely. Sending hugs. xxx

[sylvi in reply to Hidden]

They are Not good are they darling. i will press the dr on thursday and see what he has to say. Xxx

[rose49]

Hi i have sjorgens and RA and i have a really good doctor who has prescribed bioxtra oral gel and salivix salivary stimulant sugar free pastels both are much better than the salivary spray which doesn't have a nice taste It does help a lot with this condition.

[sylvi in reply to rose49]

I didn't get on with the spray either. It tasted awful and i would soonrr drink more than use that spray. I have posted a photo of my eyes. Xxx

[Hidden]

Hi Sylvi. My GP believes I have Sjogrens but I don't really have a big issue with my mouth - for me it is all in my eyes and my nose- my mouth isn't a problem yet. I have also learned that peripheral neuropathy is often associated with Sjogrens. I am a member of the BSSA because the person on the helpline was very useful.

I also occasionally use a really good forum called Sjogren's World Forum and people on there have been so knowledgeable and helpful about the drugs I've taken for my neuropathy.

As Ali says - for me the Sicca, fatigue and neuropathy have also been much more of a problem for me over the past year than my RD. I was really interested to note that Sicca/ SS can cause balance issues because I'm in New York on holiday and, despite being off the Gaberpentin now am still constantly suffering from slight vertigo and balance issues.

I can't seem to judge uneven surfaces properly just now and keep feeling panic as though I can't quite see properly although I have recently had my eyes checked? I'm using my walking stick which helps although I think I need a stick for each side really - those walking poles maybe? I was assured by people on Sjogrens World that many with Sjogrens also have this type of trouble judging spaces and uneven surfaces and having pins and needles and burning feet and hands constantly doesn't help.

Also I keep forgetting to use my Hylo Forte drops and Lacrilube just now so this is probably making it worse!

Your eyes do look very tired though. Mind you mine do too just now but I think it's travel related jet lag for me! X

[sylvi in reply to Hidden]

First off i hope you had a lovely holiday. You have described me completely. I have used a stick for years,but i still feel off balance. I saw my optician says they look rough. xxxxx

[jaydeeh]

I've found this very interesting so much makes sense I was diagnosed with SS and put on Quinoric, then a year later with RA on MTX, then about 18 months later with fibro, but I'm not sure about the latter was put on Amptriptiline. I use Sterimar for my nose I was told by GP not available on prescription so I buy over the counter and Oyxal eye drops during day and Lacri-lube at night. I only drinks lots for my mouth which is fine.

I shall look at the websites mentioned.

[jaydeeh]

I've found this very interesting so much makes sense I was diagnosed with SS and put on Quinoric, then a year later with RA on MTX, then about 18 months later with fibro, but I'm not sure about the latter was put on Amptriptiline. I use Sterimar for my nose I was told by GP not available on prescription so I buy over the counter and Oyxal eye drops during day and Lacri-lube at night. I only drinks lots for my mouth which is fine.

I shall look at the websites mentioned.

[Hidden]

Hi Sylvi, Just thought I'd add my own experiences with eyes into the pot in case you might find it helpful. I have been suffering the usual sjogrens symptoms for many years which have been well described by other members. However at my last sight test with my very good optician, he decided that my cataracts were now ready for surgery and arranged an appointment with Opthalmology dept at hospital. After four hours of very uncomfortable and intensive tests I was given the following diagnosis.

1. I have advanced uveitis

2. Macular odeama

3. Inflamed optic nerve caused probably by uncontrolled sjogrens

4. Inoperable cataracts. My eyes are covered in lots of little cataracts as opposed to the usual ones, and impossible to deal with.

My consultant was very upset to have to tell me that I am losing my sight and that there is virtually nothing he can do for me, any attempted surgery would cause a bleed and instant blindness. He said that poor control of my RA and ankylosing spondy have hastened my sight loss. He suggested I wear dark prescription lenses at all times which must be polarised. Also the side arms have to be deep in order to prevent light.

He could not give a time frame on when my sight will go completely, but the key for me now is to give as much protection to my eyes as possible, not to sit in the sun, wear a large brimmed hat, wear my special new glasses all the time, even when inside.

I have to put drops in my eyes 6 times a day, and I find a swish round with good old fashioned optrex very soothing. I see my eye consultant every three months now.

I am type 1 diabetic also, on insulin, so this doesn't help matters either.

I get flares with my eyes if I am tired, have been reading too much, but the worst thing for me is bright lights and sunshine. When they are really flaring it feels like all my facial bones are tender, specially round the eye socket, they become extremely red and just constantly pour with water. So far I have avoided glaucoma, but apparently this is another complication with uncontrolled sjogrens. My latest pair of glasses cost me £400 with all the special additions, so the future is going to prove very expensive for me.

Hope this helps, But if you want to know more I am here to help, lynda. Xx

[sylvi in reply to Hidden]

Thank you Lynda for your detailed reply. I can't get anybody to diagnose Sjorgens at the moment which i am convinced i have. My doctor this morning said my eyes were tired because of lack of sleep. I soon told him that was not the case. I am waiting for my rheumy nurse to get in contact with me this afternoon and i will have another go with her about Sjorgens. It is not just my head that is sore my hands are as well and i am certain i am flaring with both ra and fibro and to be honest i could cry as i don't see an end to all this. I am so fed up with it all. We can't win with these diseases can we. I am so sorry to hear your losing your sight i really am. I can relate with a lot of your symptoms.

Thank you for your reply Lynda and hugs to you.xxx

[Hidden]

Sylvi, we have an awful lot to put up with we RA sufferers. It's hard for others to understand the spin offs of inflammatory disorders, no one in my family, save for husband, can believe that having RA can cause such visual problems. I have been telling rheumy and GP for many yrs now about my eye problems, the constant soreness, streaming tears, light sensitivity etc. and it was only my optician who insisted I needed a referral to eye consultant. If I was you, I would perhaps follow the same line. Go and see your optician and ask if he can refer you to eye consultant. Has your rheumy given you the schirmer test, this is when special bits of paper are put under lids to measure moisture. Mine did this, said I had sjogrens and then decided all I needed was eye drops !! By the way, my eye consultant tells me that long term use of steroids can cause cataracts, and that's the last thing we RA sufferers ever want to hear. Also under the sjogrens umbrella I also suffer very dry and uncomfortable mouth and nose. I have special moisturising mouthwash and gel to apply to mouth and nasal passages to ease dryness.

Since my eye diagnosis, which devastated me, I realised that many things in my life had to change. I am still able to drive wearing my special glasses but must be home before dusk, and bright sunshine is a terrible problem. So it's only a matter of time before I stop.

We live in a very rural village with very little public transport ( I can't manage the walk to bus stop ) so we have decided to sell our bungalow next spring and move back into town, maybe even an Extracare type property so I can have help when I need it. Ken had cancer three yrs ago, he gets very tired and there's only so much I can ask him to do. I am determined to see as much as I can of our beautiful grandson while I can still see. He's 12 now and recently started Grammar School, he's a total joy to us and the thought of not being able to see him fills me with total dread. He's coming to stay with us after school tomorrow, he has his own room here and we love having him. Our project this weekend is making carrot cake. He is such a caring boy and says he will always be there for me, bless him ! Take care, lynda xxx

[sylvi in reply to Hidden]

Lynda, first thank you for your detailed answer. I have already been told that i have cateracts by my darling optician. I was at the drs yesterday and i showed him my eyes and he said i was only tired would you believe. I don't think he has a clue about what these auto immune diseases does to us. I will ask my lovely optician if he can do a schrimer test and if he can refer me back to the eye dept. of the hospital. I am still suffering from the exhaustion and fatigue.I was able to get a few things done in the morning,but even that is getting harder and harder to do. The nurse has upped my steroids and my sulpha. The sulpha to 4 tablets a day and the steroids to 2 tablets a day. I am waiting for her to ring me as she was going to speak to my consultant.

I find it so damn hard and when hubby is out of the house i sob my heart out as he is so frustrated as he can't do anything to ease my plight. Even my doctor was not much help and all he can do is listen and give me my drugs. My darling hubby works so hard looking after me and he is 71 yrs at the end of the month and he is not in the best of health himself(he has a hiatus hernia that he can't take pills for) as he suffers a fair bit of pain from it. He is so much more fitter than i am.

My hugs to you and i wish anything i say would ease your situation but sadly i can't,enjoy your grandson and i look forward to hear how that carrot cake comes out.xxxx