Suffering with Sjogrens

Hi Hayley,I am 55 years old I was diagnosed 2 years ago at first when diagnosed I had no pain apart from dry eyes and mouth. My doctor prescribed medication which I am taking at the moment still have no pain.I am on plaquenil twice daily then I ask my doctor if I could cut down on the meds once daily which I did and the paincame all over my body like I never felt before . I am back on my meds twice daily again and feel no pain just dryness of my eyes which I am on Restasis and Celuvisc.

About your oral care is very important to visit dentist regular and don't forget to floss and brush often and no sugars.

About diet I stay away from Gluten, Dairy, Caffeine and all grains . I eat quinoa and Millet it is gluten free. And stay away from meats try and eat plenty veg and fresh fish .

If you have energy try to exercise daily it helps and drink plenty water.

Hope it helps.

Hi Hayley, I'm 70, have had it for 20 years but have been more or less in remission for the past five years. I'm inclined to agree with Sweetness on diet. Obviously, sugar has to be out if you're having dental decay problems due to the dry mouth, especially sweet fizzy drinks. And don't forget smoothies - even unsweetened ones - are very high in fruit sugars, so best avoided too. Better to eat no more than one piece of whole fruit per day. Vegetables are healthier than fruit anyway, especially green leafy ones. I don't know whether this is just me (suspect it is!) but sourdough bread always makes my mouth symptoms worse.

The only thing I'd say about drinking plenty of water is - not too much at any one time. Better to take frequent small sips rather than drinking a whole glass every hour or so. Drinking too much water at once can wash away what little saliva you have. Saliva isn't just water, it also contains all kinds of useful chemicals, so water doesn't actually replace it.

I hope your symptoms ease off soon. The severity of Sjogren's varies enormously from one person to another, and even over time in the same person, so remember you might not always feel as bad as you do now, even if your symptoms get worse in the short term..

Yes ---Haley I forgot to mention that about drinking water as lily said sips at a time is best. My problem is after brushing my teeth it gets worst so I have to spray my mouth with a gel that works well for me.

Can anyone tell me if I can take supplements ? I would like to know!

Thanks ,

Hello Sweetness & Lilly thankyou both ever so much for replying to me,

its such a relief to be able to connect with fellow sufferers. Already I dont feel as isolated with this condition

as I did initially. Sweetness, I'd also like to know if it is ok to take supplements? as I've read that omega 3

supplement is beneficial to sjogrens. I think I'll check this out with my gp when I next go.

Thankyou both

xx

Hayley, all I can say is that I've regularly taken an Omega 3 supplement for about 25 years now, ever since the menopause - five years before the Sjogren's started to develop. So clearly it didn't stop me getting Sjogren's. On the other hand I've had a very easy ride with the condition in comparison with some people - apart from a few bad times here and there - so maybe it's worked. Who knows? It's like taking an aspirin for a headache. Did the aspirin cure the headache or did it go away on its own? All I can say is I'm planning to take Omega 3 for the rest of my life - just in case! My GP is hedging her bets - like they all do. She says she doesn't know if Omega 3 is any use for Sjogren's but thinks it's a good idea for anyone over the age of 50 anyway because of all the other benefits - heart, joints etc. The trick, as with any supplement (except for ginseng), is to religiously take it every day for the rest of your life. A three-month course is useless.

Hope this helps.

Yes thankyou Lily its helped me alot already to be able to talk to fellow sufferers. I am taking omega 3 because I suffer with spondilosis also, I've been taking it daily for a couple of years now. I am looking to reduce

gluten in my diet also, but I've realised it will be difficult to do this, as gluten exists in biscuits, pasta, bread lots of things really. I kind of try and work against my symptoms, because I don't want to give in to this, I guess the fatigue and cognitive stuff is the hardest symptoms to deal with? does anyone know how to reduce your gluten levels effectively please?

thankyou all

best regards

Hayley x

Hi Hayley,

I would not worry much about Gluten if you don't have a problem with your bowels like celiac disease. They told me that most sjogrens sufferers would have a problem with celiac .

I try to avoid eating too much of it . I would normally buy gluten free products in my diet but it's very difficult and more expensive . I would buy pasta and bread biscuits and crackers cereals gluten free. Most supermarkets have a section for these gluten free foods but as I said don't worry about it too much because mostly everything has gluten soaps shampoos toothpaste lotions and chewing gum have gluten. So as I said if you don't have a problem don't worry.

My diet consists of can sardines ,tuna, fresh fish, chicken ,lean pork, quinoa , millet,herbal teas, honey, nuts,lots of green leafy vegetables , bananas, and apple . I would eat a low fat yoghurt now and then no caffeine or sodas.

But what works for me might not work for you we are all different .

Diet is the key of how we feel every day.

Let's keep in touch !