Sjogren's Syndrome
Posted , 9 users are following.
Have now been diagnosed with this condition. (It has taken 2 years)Every time I saw a specialist they asked if I had arthritis - which I do not - thought I do have dry eyes and a dry mouth and they then said they did not know what was wrong. I developed a lung infection which eventually made them agree that I did have this condition. How my lung infection affected me was that I had a dry cough, breathless when walking up small slopes, wheezing, etc. I am now on steriods which have given me some unwanted side effects - interrupted sleep pattern, 'moon' face, amazing appetite and now terrible heartburn. But I do still have terrible fatigue. The symptoms from the lung infection have decreased and I am now in the process of reducing the steriods. I know that this condition is not life threatening though at times I feel quite bad and I know that it is a difficult condiiton to diagnose. Just thought I would like others to know that it can be difficult to diagnose.
0 likes, 6 replies
nursie
Posted
I've had Sjogrens for at least 20 years - I am now 51. It has been diagnosed as several different things from Lupus to Mixed connective tissue disease. I have recently been referred to a new rheumatologist who took one look at my blood results and gave me a definite diagnosis of primary sjogrens.
I have been unwell since Jan 1st this year with throat infection followed by a parotid abscess. 3 different antibiotics have seen off the abscess but I was left with sharp upper chest pain. I am now on a short, sharp course of steroids - 7 days of 30mg and off. Feeling a bit better but the wakefulness at night is a pain. How long did it take for you to get your moon shaped face? Really worried about weight gain but maybe I wont be on them long enough.
When I've finished the pred. I shall start taking Chloroquine as prescribed by the rheumatologist. Also have some good eye drops. Didn't realise how dry my eyes were til I started using them.
Spose we could have a lot worse illness than sjogrens but I find it difficult trying to tell people what it is.
Good luck!
Guest
Posted
I have a great consultant who is extremely interested in Sjorgrens and I am currently on a course of Cell Cept and Steroids. I started this treatment last August ( 2007). I was initally much better and by November was feeling the bext I had been for years. I painted the house! Dug the garden etc etc.
Then in Feb this year I started to reduce the steroids and my energy ran out at the same time.
I became very fatigued and could easily have spent all day in bed.
At the same time I started to see swellings on the small joint of my fingers, and now it looks as though I may have RA. My Consultant has increased my steroids for a month and I am keeping a diary to see how I get on. After only two days I am starting to feel much better , but my feet and hands remain sore and stiff in the morning. On a brighter note , the stiffness does wear off as the morning progresses and doesnt return until the evening
My eyes are effected and I am monitores for my eye pressure ( Glaucoma)
One thing I have learnt over the past 5 years is to remain positive and just get on with life . Stay happy,
Oklahoma_Lady
Posted
I've had Sjogrens for at least 20 years - I am now 51. It has been diagnosed as several different things from Lupus to Mixed connective tissue disease. I have recently been referred to a new rheumatologist who took one look at my blood results and gave me a definite diagnosis of primary sjogrens.
I have been unwell since Jan 1st this year with throat infection followed by a parotid abscess. 3 different antibiotics have seen off the abscess but I was left with sharp upper chest pain. I am now on a short, sharp course of steroids - 7 days of 30mg and off. Feeling a bit better but the wakefulness at night is a pain. How long did it take for you to get your moon shaped face? Really worried about weight gain but maybe I wont be on them long enough.
When I've finished the pred. I shall start taking Chloroquine as prescribed by the rheumatologist. Also have some good eye drops. Didn't realise how dry my eyes were til I started using them.
Spose we could have a lot worse illness than sjogrens but I find it difficult trying to tell people what it is.
Good luck![/quote:0099ff32e9]
I am a 53 year old woman living in SW Oklahoma, USA. It took me many, many years to arrive at a correct diagnosis of what was wrong. I have a diagnosis of Mixed Connective Tissue Disease as a diagnosis by itself. By generally accepted medical standards in the US this means that I have to also have 1) Rheumatoid Arthritis; 2) Interal Scleroderma; and 3) Polymyositis. My doctor diagnosed me in 10/1999 with MCTD, RA, possible interal scleroderma, internal lupus (SLE). Also, I am a diabetic, have psoriasis, and also have sjogren's syndrome and as a child showed the symptoms of Raynaud's syndrome or phenomena. I would be interested in sharing my experience with you and hearing yours. I am on a lot of medication.
Take Care!
Renette
Posted
My rheumy says its likely to be sjogrens, and mixed connective tissue disease, with Lupus being at the forefromt, he also called it underlying overlap of diseases.
He did lots more bloods, but wont get results until next March when I have my next appt. Will try to get the results by calling the clinic in around 10 days time.
Have had dry eyes for around 5 years, and then mouth became dry around a year ago, also lips. Have bought some eye gel from the pharmacy as my eyes were constantly stinging, especially in the sun. Have had 2 mouth abcesses, despite going to dentist regularly, so presume its the sjogrens. If anyone is on meds please let me know as no one seems to offer anything. Thanks
piglet
Posted
I am 51 and have had Rheumatoid Arthritis for about 9 years, or possibly longer, l have been also diagnosed with Fibromyalgia as a co-existing condition but most recently with Sjogrens Syndrome also co-existing. I had an operation to insert plugs into my tear ducts and this has improved the eyesight but recently l was experiencing a lot of numbness, pain and burning sensations in my feet and hands, this was diagnosed as peripheral Neuropathy and a consequence of Sjogrens.
Is there anyone with this problem, it is really difficult to get any useful information so any ideas or thougts would be appreciated.
Piglet
Lizy
Posted
Hope you are feeling well.
I was diagnosed with lupus about 7 years ago and sjogrens syndrome in Sept. I now use eye drops for my dry eyes and take hydroxichloriquine for the lupus which I am under the impression this will also help with the sjogrens. I also have a very dry mouth.
If you have any questions ask away I will try and answer you but it will only be in the context of my experinces over the last few years.
All the best Lizzy