Sjogrens

villier

Does anyone on here have Sjogrens I know it can be linked to RA although mine is linked to a neuropathy as it is OA I have, I have to go and see a Rheumatologist I just want to know what to expect............Marie xx

dreamdaisy

I know of at least one person on here who has that but she isn't posting too much at the moment due to other health problems. When was yours diagnosed? DD

barbara12

Hi Marie
Sorry I cant help, since coming on this forum it has surprised me what type of illnesses are link to arthritis, If I were you I would post this in LWA xx

suzygirl

I have Sjorgens among other things, a few of us on here have it. It be a better question on LWA.

villier

Thanks DD, Barbara, Suzy will maybe repost don't like doing as not arthritis related in my case........DD was just diagnosed on Friday..........Marie xx

stickywicket

I agree that you should re-post on LWA. I can't help, myself, but I'm sure others, who have it, are more likely to see it there.

tillytop

Hello Marie

I have Secondary Sjogrens which affects my eyes and mouth - and may be a contributory factor in my digestive problems. Mine was never officially diagnosed - just assumed, based on my description of symptoms and the fact that I have longstanding RA. I understand that there are some tests though including using a kind of "blotting strip" to collect moisture from the eye to see how much moisture there is and lip biopsies. Although Sjogrens falls under the specialism of rheumatology, you may find yourself redirected to other specialists to deal with specific symptoms - ie eye specialists or ear, nose and throat specialists.

You might find some helpful information on the British Sjogrens Syndrome Association website and I have put the link here for you. http://www.bssa.uk.net/

Good luck with your rheumatology appointment- and if you are having trouble with Sjogrens type dry eye/mouth symptoms and would like some tips and tricks on coping - please feel free to ask on this thread or to send me a PM.

Tillyx

villier

Thanks Sticky and Tilly

Tilly I also have secondary sjogrens, mine is linked to a very very rare neurological condition. I have had the schrimer test(blotting strips) also rose bengal test where they put dye in your eyes and check them through a slit machine, both these tests came back negative, and my ANA blood tests came back weakly positive, I recently had a lip biopsy done which has come back positive, apparently this is the test that confirms sjogrens if other tests are negative. Recently my eyes have been stinging like mad watering then vision going blurred so I made an appointment at the optitians she did a rose bengal test which has shown dry eyes, that was just on Friday, she gave me gel tears which has really helped I haven't had one bit of stinging in my eyes since. I also have gastro-intestinal problems and hoarseness which my GP is giving me Lanzoprazole for, do you think the rheumy will look further into this?thanks again for the reply.................Marie x

[Deleted User]

Hi,

Moved to LWA - the most appropriate forum for this topic

Moderator
YEH

villier

thanks moderator for moving this post i appreciate.

hi wazz thanks for the reply i would appreciate if you would pm the details of the ointment and i can get my gp to prescribe it for me, like yourself i use chewing gum for the dry mouth, i am wondering if my sjogrens is affecting my kidneys as my gp phoned to say the blood tests i had taken last week shows high potassium levels and to come in and get them done again, i will certainly say to my dentist as my gums are bleeding now when i brush my teeth thanks again...........mariexx

tillytop

Hello again Marie

Just coming back in response to your question about the rheumatologist and possible further investigations re the hoarseness and gastro-intestinal problems. I very much hope you will get further help from the rheumatologist - although I have to say I have had little help from mine re the Sjogrens because he is always only concerned really with my RA and the Sjogrens doesn't get a look in :roll:. But since, in your case, you are being referred specifically for the Sjogrens, hopefully you will get some good advice and further referrals if necessary. Don't be afraid to ask though because although the rheumatologist is, in theory, the Sjogrens expert, he won't have the specialist knowledge needed to give the best advice on eyes, ent, gastro etc.

Re products to help, as per your most recent post to Wazz...

I've tried a number of different lubricating eye drops and the ones I find best are called "Hylo Forte". They are available over the counter I think but are expensive and I am lucky that mine are now prescribed for me. When my eyes were less dry than they are now, I used to find that "Optive" helped but the over the counter size is very small and very expensive, so again it is good if you can have them prescribed. At night I use "Lacrilube" ointment - very messy but longer lasting than the drops. Top tip - if you are using eye drops long-term you need to make sure they are preservative free - or, if not, have the kind of preservatives which don't stay in your eyes (the eye consultant explained this to me and I believe that both "Hylo Forte" and "Optive" fall into the latter category.) "Lacrilube" is, I think, preservative free anyway.

Dry mouth wise, I use "Biotene" dry mouth toothpaste and mouthwash which I get on prescription these days, though they are available over the counter. They contain digestive enzymes which can help to overcome some of the dental health issues associated with a very dry mouth. When I went back to the dentist after I started using them, he was amazed at the improvement in my teeth and gums. The mouthwash seems to be unavailable at the moment though and no-one seems to be able to stock it. The sugar free gum mentioned by Wazz is also useful sometimes. I also regularly use an over the counter dry mouth spray which I find is a brilliant quick fix when out and about, and between mouthfuls of food to help me swallow. If you would like the details of this, please let me know and I will PM the details. My GP prescribed a dry mouth spray for me once but I didn't find it helpful and I believe that it had a reputation for causing tooth decay when used long term - which is not really very helpful.

Really hope you do get some help with your Sjogrens Marie.

Tillyxxx

villier

tilly thank you very much for all your info i reallly appreciate it, i don't think it had really sunk in on friday when my neuro phoned me as my mund was on other things, i was expecting the results to come back negative thats why any information is welcome................marie xx