New Sjogren's patient. What should I ask my rheum consultant re management?

Treatment is mostly focussed on the symptoms - mouth sprays to counteract loss of saliva, eye drops to replace tears etc. It might mean, of course, that you'd have to go via the NHS to see a specialist like a rheumatologist or ophthalmologist, but apart from that I don't see why your insurer has to get involved.

I don't think you need to worry about blood thickening. Sjogren's doesn't actually cause dehydration. The dry mouth and eyes, thick respiratory secretions etc. are because the individual glands don't produce enough fluid.

Thanks very much for responding and your advice. My post was short and not very clear. In the UK if you have private health insurance you can go quickly to a consultant (nhs would be very slow indeed unless critical). It's not uncommon to take six months to have one test then results. So great I have insurance. However the insurance companies do have exclusions which they will not fund once confirmed. I'm seeing a private consultant re my symptons and he thinks it's obvious I have sjogren's (awaiting results). Once he diognoses SS as it can't be 'cured' i.e. chronic, the insurance company will no  longer fund any further private visits. I have to call before each and every step to gain approval for any charges so can't hide it. 

Great to know it shouldnt effect my blood! Symptons have reduced since excluded sugar wheat and alchol as well as starting swimming and yoga. But that might just be because a flare up has finished so I'll see how it goes.  I'm using coconut oil for my mouth at night coating my palet and gums. Gel for eyes. Joint and muscle pain, nerve pain is harder to manage but rest/gentle excercise helps. 

The consultant wants me on an anti marlaria drug! Hoping I can just keep for bad days as hate taking meds. 

So I will probably only see the private consultant one more time and any help in how I should best use this would be very much appreciated. After that I probably won't even be under any nhs consultant. I'll probably just be left to carry on and live with it (just as happened with my thrombophila).

The amount of information to digest and the range of symptons is overwhelming. Im a little worried by some stories of how bad this can get. I hope everyone is doing well and thanks again for your support.

Debs

(apologies for spelling - can't live without spell checker! :-). )

I too am recently diagnosed with SS and I am 68. It's taken ages to get a diagnosis because of all the other symptoms I have been experiencing. I stopped being able to swallow in November - for 3 months this went on and had to get an upper GI consultant to check I had no problems. I had a hiatus hernia and thrush in the throat and esophagus, so when this cleared up I still had a problem swallowing. It was onloy by chance when I told them about my dry eyes and dry mouth that I was told it could be an auto-immune problem and go and see a rheumatologist. I have had all the blood tests and schirmers test for my eyes which was not a good reading ( tests the tears ). I have had a private speech and language specialist to help with the swallowing issues and happy to say I am now eating again - but food has to be very, very moist. Its not producing the Saliva that stopped me from swallowing. I decided to become a member of the British Sjorgrens Society (£25), but well worth it. They send you all kinds of information and literature on what to do and not do, also you can join a group local to your area and make a friend - I'm still waiting to be contacted as I only joined last week.

My Rheumatologist ( which I have for 3 visits also ) has written to my GP and told them to get me an appointment on the NHS with a Rheumatologist at our local hospital for continuing Chronic care. You will need to have blood tests done regularly. Everyone seems to suffer some or all of the same symptoms, but not at the same time. Mine vary from week to week - some days I feel great other days my throat feels swollen, my mouth gets very sore - I ache in all different places and generally feel under the weather.

I hope you don't feel too isolated, it helps to contact people with this condition as they do understand how you're feeling.

Good luck with your continuing care

consultant.

Sounds like you are already aware of some good things to do, like using the coconut oil, and cutting out sugars from your diet. I too prefer a natural route to healing and changed my diet about a year ago. Cutting out sugar was one of the best and most difficult things to do. I try to limit my sugar intake to that found in natural fruits, but it is difficult to do. There are so many sauces, dressings, and packaged foods that contain sugar. I often resort to making my own version so that I know exactly what goes into the food. I don't want to make this post too long, but just mention that educating yourself on why there is a breakdown in our bodies with the autoimmune system is a good place to start. I have found some excellent books that go into scientific detail but also provide practical advice for figuring out which foods will hurt and which good will help heal your body. If you want the names of the books, let me know. Also I have learned that meditation (yoga), managing stress, moderate exercise, rest, managing the toxins in your environment, in addition to eating right will help. Best of luck!

I have been suffering with sjrogens for 2 years .It is awfull !!

You can ring for a chat if you like.  I am in Bedfordshire  on  01767 691175.