Sjogren's syndrome - chest problems

dianaw

Hi

Just been diagnosed with sjogren's sydrome. My eyes, mouth, are dry. Also my tounge is saw and skin comes off. Have been given gel for eyese and saliva drops for mouth. Saw rheumy nurse last week had cough for 3 months, had 3 lots of antibiotics and have had chest scan. Now I have to have CT Scan on chest as they are trying to rule out that the rheumatoid has not affected my lungs. Also this sjogren's sydrome does evidently give you a cough.

Just wondered if anyone out there has this and can advise me.

Thanks
Di :

woodbon

Hello,
I'm sorryt that I can't help you as I have OA, not RA or Sterjions (spelling is awful) :oops:

I'm sure some people on here have your problems and will be along shortly and answer your questions. It does sound a horrible thing to have to put up with a sore mouth and cough, I hope they soon find the cause and give you the correct medicaitons to make you feel better. Lots of love Suexxx

carola

H Di
Don't think we have spoken before so Hello
I was initially diagnosed with Rheumatoid Arthritis and the rediagnosed a week ago with Systemic Lupus Erythematosus.
I bought a great book which includes a chapter on Sjogren's.
Book called The London Lupus Centre, Book of Lupus: A Patient's Guide by Graham Hughes.
It says Sjogren's is a cousin of Lupus however with correct treatment all will be good and contrary to historical popular belief does not develop into Lupus. Dry and itchy eyes, mouth are common. Woman's bits can get dry sometimes therefore watch out for cystisis which is eastily sorted. This dude usually treats the general symptoms of Sjorgen's with quinine in the form of hydroxychoroquine (Plaquenil) which is a mild medicine. Artificial tears for your dry eyes and dry mouth a bit more difficult to treat - he says sips of water or sometimes sugarless gum helps. Allergies incl food allergies can happen especially to a med for cystitis called Septrin a type of antibiotic.

Hope this is ufeful! Carol

dianaw

Thanks girls for coming back to me so quickly. I will have to check this book out. As you say Carol woman's bits get dry and this is exactly what I have, and doctor has given me cream.

To add to it all I have iron difficiency, had endoscopy and colonoscopy, then last week CT colonography. If all of this does not show anything up they then want me to have barium meal and then go to St Thomas's in London to have camera which takes about 52,000 pictures, but I have had enough of all these tests and just really feel so low at the moment as this dryness all the time is driving me mad together with the RA. and all the meds. I have refliximad infusion and even that this time does not seem to have had the effect it had last time.

Still never mind we have to keep smiling don't we.
Thanks again
Di x

carola

Hi Di

Yep, we do indeed need to keep smiling

I should've of said that in the book it said dry woman's bits can happen and may cause thrush and also dry bladder and urethra which can cause non infectious cystitis.

The book is simply written and a shame that it only has one chapter on Sjogren's however when I was rediagnosed and flew into a panic I bought the book the next day and it calmed me right down about my particular condition.

Hope you get some relief soon and keep smiling
Carol

dianaw

carola wrote:

Hi Di

Yep, we do indeed need to keep smiling

I should've of said that in the book it said dry woman's bits can happen and may cause thrush and also dry bladder and urethra which can cause non infectious cystitis.

The book is simply written and a shame that it only has one chapter on Sjogren's however when I was rediagnosed and flew into a panic I bought the book the next day and it calmed me right down about my particular condition.

Hope you get some relief soon and keep smiling
Carol

Thanks Carol for that will buy the book . Went to doctors yesterday and got thrush medication in tablet form as I have had more antibiotics and I seem to get thrush when on these.
Have nice weekend.
Lets hope the sun shines.
Di xx

marion1952

Dear Di

Just to say sorry you are having so many unpleasant symptoms at the moment... I don't know anything about Sjohrens, but if you check out the Arthritis Research Centre website I think you will find a downloadable leaflet.

Please keep posting and let us know how you get on - I am sure there are Sother johrens sufferers who look at this forum and who will find your experiences very helpful ..

Best wishes

Marion

elnafinn

I used to be very prone to thrush when taking antibiotics. Trouble is the pills kill the bad and good bacteria. :roll:

I used to suffer badly from dry eyes and then it disappeared for years. Now it comes back to haunt me every so often and I use the hypromellose eye drops that the gp recommended when I was diagnosed with dry eyes all those years ago. Sometimes they help now and sometimes not. A good night's sleep seems to help me though!

Elna x

dianaw

Hi

Thanks for the info. Have been on website and found leaflet which will help. Just dont like having this persistent cough.

Just feel as though it never seems to stop, we really do have to put up with a lot when others i.e. other half moan when he gets a cold (or flu as he puts it).
Di xx