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Originally Posted by MAT52
Hi I'm new here and this thread is fascinating to me. I have been on many forums but none where people know so much about their conditions and the scientific aspect of these!
I am still on a very slow path to diagnosis and am really anxious that my SFN will be branded as "idiopathic". I do have a confirmed diagnosis of Rheumatoid Arthritis and have spent three years on steroids and DMARDs but haven't tolerated three of these now and have also failed to tolerate Amitriptyline, Gaberpentin and now am not getting much from Cymbalta at all.
I have learned from my GP that my lumbar puncture shows high immunoglobulin - which he says confirms that my symptoms are immune mediated at least.
I have very dry eyes but no blepharitis and my mouth gets dry, especially on certain medications - but my oral hygene is good which my dentist says it wouldn't be if I had primary Sjogrgens. The neurologist said that my Sjogren's antibodies are negative and sees no purpose in my having a lip biopsy. As I have RA the Sjogren's is very normal as a secondary condition.
It sounds to me as though you need immune suppressant drugs. Hydroxichloraquine is the gold standard disease modifying treatment for Sjogren's and also for Lupus, RA and other connective tissue diseases. Unfortunately it made my face and lips swell and gave me a painful rash after a year - although it worked very well for inflammation and many tolerate it fine.
Topical treatments to keep your eyes from developing corneal ulcers are very important. I use Lacri-lube at night and Hylo Forte drops (preservative free) during the day -sometimes hourly. Keeping the mouth moist during the night is important too and avoiding sugars and keeping your mouth as clean as possible is very important. A good rheumatologist should be able to diagnose Sjogren's with or without positive antibodies but I think there is a lot of ignorance about this disease and the ways it can affect a person. Dentists and opticians tend to see it more realistically.
A good optician should be able to perform a tear break up test on you and see whether you have enough tears. A good dentist should be able to see how much saliva your glands are producing. I also have Salivex pastels to suck when my mouth gets dry - they are really good.
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Sjogren's is more than dry eyes and dry mouth. I have a very high ANA, but negative ENA that is, I don't have the specific Sjogren's antibodies. I have a positive lip biopsy, which doesn't mean much to most rheumatologists. Almost all of them have shrugged their shoulders and said, "yep, there is inflammation there." Rheumatologic disease is very poorly defined other than by antibodies and most people who have one, also have at least characteristics of another. It seems silly to me, to think that an autoimmune disease won't attack the nervous system.
I have been on numerous treatments. I can't take many DMARDS due to other issues, a problem with my ATP generation cycle-Myoadenylate deaminase deficiency and folate issues-MTHFR compound heterozygote. I also have problems with my Cytochrome P450 drug metabolic pathways. Plaquenil caused me to break out in a rash that looked like a cross between measles and hives. I had IV steroids for several months. IVIG for 3 years (stopped due to distal renal tubular acidosis), prednisone for 2 years and I am weaning off, with difficulty. I have been offered Rituxan, which I didn't want at the time. I would rather try plasmapheresis first or a shorter acting monoclonal antibody if possible. I am going back to the autonomic center, and I will see what the doc is thinking. My old doc left 2 years ago and now I have to get used to a new doc. What is bothering me most right now is soft tissue issues and all kinds of fasciitis, bursitis, tendonitis and that whole thing. Not sure what this is all coming from, but likely it has something to do with the high ANA. My AAG seems to be fairly calm right now, but that can change fast.
As far as Sjogren's as a diagnosis goes, Rheumatologists have not defined it well enough. There is a Sicca Syndrome which is dry mouth and dry eyes, without the positive ANA and without autoimmune issues. Sicca and Sjogren's have been merged in the public mind so that any one with dry eyes is thinking they have a disease similar to Lupus, and that may or may not be true for them. It may be, and likely is that the dry eyes of Sjogren's is due to the disease attacking the nerves that are involved with lacrimation and salivation, not the actual glandular tissue itself. Some rheumatologists define Sjogren's as the attack on the actual glandular tissue and not the nerves, others do not make that distinction.
Rheumatology is going to be faced with all kinds of diagnostic conundrums in the future as new antibodies, including those against the autonomic ganglia are discovered.
Thus far, the best treatment I have had is from neurologists who have a handle on the neurological basis of the disease, and YES, your eyes and mouth can get very dry from neurological issues, be they medication induced or autoimmune damage to the innervation, (not sure if that would be called Sjogren's) All that said, I was told by my former neurologist, a specialist in autonomic disorders, that I had AAG. He said it was likely a channelopathy. It could be hereditary, or acquired or both. He said it could be associated with Sjogren's, which I may or may not have depending on the diagnostic proclivities of any given rheumatologist. (ANA -mine is highly positive and nucleolar, SSA, SSB-mine are negaitve, lip biopsy-mine is positive, Schirmer's tests are not considered as much evidence by rheumatologists-but mine was dry and they put in punctal plugs which fell out, dental condition- mine is bad....has been all my life, so lots of money in restorations, which is typical of Sjogren's or Sicca as well as those who are FUT2 nonsecretors which I am.)
I think as neurology and rheumatology learn more about all this, the old names for diseases will disappear in favor of a different classification system which addresses all the different antibodies and all the differing symptoms.