I have become way more tired, I find it really difficult to get out of bed.

Hi Sally yes I also have depression I have on going stress. The young Dr was just guessing I think. I saw my GP today who asked "was he mad" he has put me on steroids to help and we are talking about a sleep study.

i have also changed up my diet a bit to try heal my self a bit. The depression can be biting though.

Hi Jill, I'm glad you're finally getting the help you need. That doctor at the hospital should never have brushed you off like that.

One small caveat though... try not to stay on the steroids too long. They can be great for a short-term boost but staying on them long-term can produce all sorts of other problems you never had before. Sjogren's won't shorten your life. Long-term steroid use probably will. And steroids will almost certainly make your life even more miserable than Sjogren's after the first few years.

Obviously, you can't stop taking them abruptly either, unless your doc has deliberately prescribed only a three-or-four-day booster course, in which case it's OK. If you're on them for any longer than that, you'll need to tail them off slowly under medical supervision. Steroids will rapidly make you feel very much better. However, the side-effects kick in much later down the line, and many are irreversible. Try not to get so seduced by the initial feeling of wellbeing that you pester your doctor to keep you on steroids indefinitely. Doctors are only human, and faced with a patient who is clamouring for medicine, will often prescribe against their better judgement.

Modern medicine is great, but the old adage is still true: there is no such thing as a free lunch...

Totally agree .,,with Jill here Lily, steroids are great for short time use..they thin the blood..too plus other problems ......Drs can't even operate if needed on people who have taken them within a few days..glad your getting the help needed though, be blessed:-) xxxxx

I go on a short course like that when the Asthma won't move..same ammount too..great you have a good doctor that you can trust sometimes it's just sooooo very  hard for people who suffer with Fibro to get one...I am very sensitive to smells, dust and pollen, I use wool fat up my nostrils so I can't beathe anything in that's harmful...if I do, it just sticks to the wool fat...end of my day I just clean it out with a hanky...then put a fresh lot n after shower ......no more issues..it really works ..have a great day.....be blessed Jill..:-) xx

So glad you're finding a solution, Jill. A short course of steroids will do you the world of good. I have the same problem with my airways at night. Thick secretions are common in Sjogren's sufferers. Where I live I can get a mucolytic (i.e. mucus thinner) called bromhexine in tablet form. It was originally prescribed by my doctor for an attack of sinusitis, but you can get it OTC here, and he says it's fine for me to take a dose at night. On a recent five-day visit to London I managed to forget to bring it with me. I tried at various pharmacies but they all said it didn't exist in the UK. I ended up having to buy cough syrup but it didn't do the job nearly as well! I find it also helps to avoid dairy and chocolate (especially milk chocolate - worst of both worlds) after mid-afternoon.

Hi both of you. I use otrovin spay twice a day. It's just a eucalyptus and water mix. I take a lot of medicines for my heart so anything full of ingredients is out. Yes the steroids have really helped pick me up, down to 12.5 today and I can feel the tiredness lurking but feel much better. In the meantime investigating Paleo food, just basic whole food, in an effort to build myself up to a healthy level before the steroids finish. 

I was so sick of feeling the way I did. I wanted to explore avenues. I read the American Facebook site and some ladies there are swearing by it. I was born in York therefore I am somewhat sceptical that it's the "second coming" so to speak but a change is worth a try.

i am just aiming for self knowledge before I visit the hospital again in August.

I've been eating the Paleo way now fir 2 yrs it's just great, I just had my bloods done and they are great...my husband is on it too and the doctor couldn't believe how great everything was for us.... sooo good ....check out

The Paleo Mum on Facebook,..she is a nutritionist a dr..and an autoimmune sufferer too, so every thing she shares is scientically researched, there's  loads of recipes too..just wished I knew all this years ago..grr.....it's taking the world by storm ...everything all my life I've been told not to eat coz it's bad for you...totally debunked now..be blessed...Jill..hope everything is going ok for you ....:-) xxxx

Thankyou for the lead. I will look for it on FB. You know it's hard who to believe. I love red meat and not willing to vegetarian. We have a chef here who is the leader of the cause. He has lost lots of weight and has brilliantly white teeth and blue eyes. I don't care about weight I just want to feel well. I know the universe is trying to help mr so on I go 

Hi Jill. You say it's hard to know who to believe. One thing I've discovered in >20 years of SS is that you need first and foremost to believe in yourself, to show your immune system who's in charge. I believe that's why different people get results from different (and often conflicting) diets. Whatever they're eating, they're taking charge.

I don't eat a paleo diet myself, but I have to admit that looking back over the course of my SS, and the severe RA that preceded it by about 10 years, I am struck by the resonances with paleo.

I developed RA in my late 30s, around 10 years after gravitating naturally to a vegetarian diet - more like vegan, really - with lots of pulses (legumes) and whole grains. The RA was really bad - like not being able to get out of bed some days because of the pain, falling over in the street when my hips gave way etc. I saw a fantastic homeopathic rheumatolgist (in a country where all homeopaths have to be fully-qualified doctors) and he told me pulses were one of the major causes of my RA. I cut back sharply on them and the RA disappeared, never to return. However, I bumped up my intake of whole grains and introduced some dairy to replace the pulses.

10 years later, after the menopause, I suddenly started getting the desire to eat meat (all sorts) and fish again. As my vegetarianism hadn't been on moral grounds, I gradually started re-introducing these foods into my diet. A year or so after that I started getting the first (undiagnosed) symptoms of SS. I've often wondered over the years whether this was the result of starting to eat meat again, but now I'm starting to think it might have been the other way round! Did I start craving meat again after all that time because my body was starting to develop SS and knew it needed meat (especially as a replacement for grains) to combat it?

20 years on and largely in remission, I eat a mixed diet, but with lots of emphasis on green vegetables and tomatoes (both raw and cooked). However, I've been having problems with dairy for some years now. I still eat it but not too much and never in the evening, especially not chocolate. One of the residual symptoms of my SS is a thickening of my respiratory secretions. As I have narrow airways and a tendency to sleep apnoea anyway, eating dairy late in the day is a recipe for disaster!

Now, just in the last year or so, I find I don't want to eat much in the way of grains any more. That's whole grains, of course. I've always tried to steer clear of refined anything. Grain products I previously enjoyed now give me a sore, bloated feeling in my stomach so I've largely lost the taste for them.

I find all this very interesting, as it tends to confirm my long-existing conviction that we need to listen to what our bodies are telling us, particularly in connection with auto-immune diseases.

So... it looks like I'm eating a semi-paleo diet anyway, having been guided to it solely by information from my own body. I'm therefore all in favour of anyone trying it. I would, however, raise the caveat that getting too obsessive over any diet or lifestyle is likely to send negative vibes to the immune system. Whichever diet you go for, don't be afraid to cut yourself some slack occasionally. I also have a couple of minor quibbles with some of the claims surrounding the paleo diet. One of these is that none of the paleolithic human remains we've found have shown any evidence that people in that age died of strokes or heart attacks. I'm sure that's true, but then again, the remains have also shown that most of them died in their 30s!

Good luck with your journey to taking charge of your own health!

Jill, that's exactly the same reason I went Paleo..fir health benifits..the weight I list was a real bonus....once your at your right weight you just stop losing it..it's sooo healthy it's unreal..I also make Kombucha and Kegur google that too. Very very east to make,......bonus,,,very very cheap too...happy googling. O, yes and as far as red meat goes...plenty..you will love it....

Hi Lily, thanks for the reply. No I am not an obsessive person, but when you read labels and find variants of wheat, sugar and lactose in just about everything, I think the saying "don't eat what your grandma wouldn't recognise" and trying to follow a cleaner diet of grains etc  is a far better thing to explore a diet that claims to offer a cleaner way of living and eating than I have been.  You are quiet right that early humans died very early on and some of the claims made are ludicrous but I hate packaged food and go to a lot of trouble to cook from scratch. At least I know what my family,are putting in their mouths. Thankyou for sharing your journey. Quite frankly I have had enough trouble with my spine up til,now and so never bothered too much. Now though, after being so sick I thought I had to try something.

My post to you is still waiting for the moderator..I haven't put anything I shouldn't have in it at all..only my own personal experiences with Paleo, hoping you can read it soon..be blessed:-) xxx