Hi Joanna,

I've been MIA for a while on Neurotalk, busy fighting another cause, but saw your post. Well done for battling for the diagnosis.

Just a quick link that might help you get treatment. I thought of Humira as some RA patients also with Sjogrens (my brother included) have found some improvement with the Sjogrens when taking Humira. Here's a link to a UK research group that might be able to tell you more: Sjögren's Registry - Welcome

All the best with the NHS.

May you get relief from new treatments that you are now eligible for due to you dx.

Thank you all for your wonderful replies. Despite diagnosis I feel absolutely neglected in no mans land like most of us in this country. My rheumatologist has nothing of worth to say at all possibly because I have proven her wrong despite her insistence I did not have it. She just will not discuss sjogrens with me despite serious neuro problems. They don't have a clue over here. A lovely sjogrens specialist didn't have much to offer either in the way of specific advice for treatment, aside from try 'immune suppression'.

They will absolutely not offer IViG on nhs unless you have specific conditions - this not included. They won't offer rituximab unless part of a clinical trial and seropositive only. I am trying to identify any people with seronegative neuro sjogrens who has had Rituximab with any success. If there is anyone out there in this position please let me know. I am told they believe seronegative types do not have B cell proliferation like seropositive do. Is there any evidence for this. I can't find anyone who tried rituximab successfully in seronegative group.

Thank you for your comment ref Humira! I feel very cautious with biologics but have decided to get on embrel as the A.S is playing up and I'm being directed to nothing else bar plaquenil. My experience here in the U.K is of absolute ignorance as to how to try help. They offer the Enbrel as they suggest helping th A.S may help the sjogrens. I have to try this but feel like they are stabbing in the dark.

I emailed Dr Birnbaum, the expert in the U.S, today. He kindly replied but can't advise me without being a patient. I know I'm like a dog with a bone on this one but I will not accept they are doing all they can to help us in the U.K. They simply are not. I hoped Dr Birnbaum would advise as to exactly what they would suggest trying in order of priority treatment wise for us with neuro sjogrens.

I'm so sorry you are in this position. You obviously need help and an effective treatment program.

Dr. Birnbaum has been my physician for almost 10 years. I know he would have so much to offer you, but of course, he can't 'advise' someone that is not his patient. That being said, maybe try contacting him again to see if he will work with your physician...by phone. I have heard of some doctors doing this long distance...through the patient's own doctor. I don't know if your doctor will participate, though. What do you think? It would be a consult between the two doctors vs you and Dr. Birnbaum...but you might be able to get him to participate and get the benefit of his expertise. I think the only problem would be to get your doctor to participate.

Immune suppression is certainly worth considering...since you have no other options. Cellcept is worth trying. I found it helpful for the short term I took it (until I got an infection due to another cause). It's better than nothing!!