[deb b]

Good morning,

I am interested in hearing from anyone who has Sjogren's....your experience, symptoms, how diagnosed, treatment, what other conditions you have, has it affected any of your internal organs, etc......Thanks in advance for sharing!

Here is my experience; I haven't connected with my Neurologist yet about the diagnosis to see if there are other things to do from her perspective

I was diagnosed with Sjogren's this week by an eye specialist (Dr. George Papaliodis) in Boston, MA. My Neurologist, who follows me for CRPS, Erythromelalgia and small nerve fiber polyneuropathy, referred me for extremely dry, painful eyes that have progressively worsened over the last 18 months while on Restasis. A very, very dry mouth and nose are other symptoms I have. All other tests (many!) for finding underlying cause of the polyneuropathy have been pretty unremarkable to date, with the exception of a high ACE test (with no sarcoidosis) and a positive ANA. To say I was surprised with this diagnosis is an understatement, as I expected another normal result.

Although my Sjogren's antibodies are negative, I have virtually no moisture in my eyes (0 mm in one eye and 1mm in the other....no wonder why they feel like sandpaper!). He mentioned that of course meds, aging etc....are contributing to the dryness, but "he had no doubt" that I have Sjogren's, especially in light of my other conditions. Asking who started me on Restasis, he mentioned I should thank that person because without it, more aggressive treatment would have been needed. I have a call into my Optometrist!

Dr. P likes to move slowly in terms of treatment, starting with the most conservative and I respect that. My current treatment is to up the Restasis to one drop each eye 3x/day, instead of 2x and using lubricating eye drops daytime and gel at night. He also recommended Flaxseed. Revisit in 6 months or sooner if issues.

The Sjogren's Foundation has great info and I've started using suggestions for my mouth and nose. I had already been treating my dry mouth with RX toothpaste, sugar free lozenges and lots of water. I knew something was wrong when I needed 3 cavities filled this year, something I haven't had in 20+ years! A humidifier is on its way too!

Deb in NH

[baba222]

Originally Posted by deb b

Good morning,

I am interested in hearing from anyone who has Sjogren's....your experience, symptoms, how diagnosed, treatment, what other conditions you have, has it affected any of your internal organs, etc......Thanks in advance for sharing!

Here is my experience; I haven't connected with my Neurologist yet about the diagnosis to see if there are other things to do from her perspective

I was diagnosed with Sjogren's this week by an eye specialist (Dr. George Papaliodis) in Boston, MA. My Neurologist, who follows me for CRPS, Erythromelalgia and small nerve fiber polyneuropathy, referred me for extremely dry, painful eyes that have progressively worsened over the last 18 months while on Restasis. A very, very dry mouth and nose are other symptoms I have. All other tests (many!) for finding underlying cause of the polyneuropathy have been pretty unremarkable to date, with the exception of a high ACE test (with no sarcoidosis) and a positive ANA. To say I was surprised with this diagnosis is an understatement, as I expected another normal result.

Although my Sjogren's antibodies are negative, I have virtually no moisture in my eyes (0 mm in one eye and 1mm in the other....no wonder why they feel like sandpaper!). He mentioned that of course meds, aging etc....are contributing to the dryness, but "he had no doubt" that I have Sjogren's, especially in light of my other conditions. Asking who started me on Restasis, he mentioned I should thank that person because without it, more aggressive treatment would have been needed. I have a call into my Optometrist!

Dr. P likes to move slowly in terms of treatment, starting with the most conservative and I respect that. My current treatment is to up the Restasis to one drop each eye 3x/day, instead of 2x and using lubricating eye drops daytime and gel at night. He also recommended Flaxseed. Revisit in 6 months or sooner if issues.

The Sjogren's Foundation has great info and I've started using suggestions for my mouth and nose. I had already been treating my dry mouth with RX toothpaste, sugar free lozenges and lots of water. I knew something was wrong when I needed 3 cavities filled this year, something I haven't had in 20+ years! A humidifier is on its way too!

Deb in NH

Hope things improve now Deb. I have a friend with this and it took them TEN years to diagnose. I wish I had a dollar for the number of times the doctors told her it was anxiety!

[en bloc]

I have Sjogren's (and several other things), and it is the basis of my neuropathy (both autonomic and peripheral/SFN) due to attack on the dorsal root ganglia.

It's a bit unusual that an eye doctor (I'll assume he's an ophthalmologist) Dx'd the Sjogren's with just a Schirmer test. It is quite common (up to 40%) for patients to be sero-negative for Sjogren's antibodies, but then a lip biopsy is usually done to confirm the diagnosis. There is SO many causes of dry eye/mouth, which the most common being medications. I'm glad your eye doctor is addressing this, but a rheumy (which you need to see as well) may not treat with Plaquenil (first line treatment for Sjogren's) without first having confirmation by lip biopsy. Sjogren's is a systemic condition, so you should see a rheumatologist for complete treatment (not just eyes). Since you have other significant conditions, this is even more important that you discuss with both your rheumy and neuro.

Your neuro may feel that your SFN is from the Sjogren's (if he agrees with the Dx). Then other treatment options (like IVIG or immunosuppression) may be considered.

There are Biotene products for dry mouth that are available OTC. Be careful with the humidifier, as they required constant thorough cleaning when used regularly due to mold build up very quickly.

[deb b]

Originally Posted by en bloc

I have Sjogren's (and several other things), and it is the basis of my neuropathy (both autonomic and peripheral/SFN) due to attack on the dorsal root ganglia.

It's a bit unusual that an eye doctor (I'll assume he's an ophthalmologist) Dx'd the Sjogren's with just a Schirmer test. It is quite common (up to 40%) for patients to be sero-negative for Sjogren's antibodies, but then a lip biopsy is usually done to confirm the diagnosis. There is SO many causes of dry eye/mouth, which the most common being medications. I'm glad your eye doctor is addressing this, but a rheumy (which you need to see as well) may not treat with Plaquenil (first line treatment for Sjogren's) without first having confirmation by lip biopsy. Sjogren's is a systemic condition, so you should see a rheumatologist for complete treatment (not just eyes). Since you have other significant conditions, this is even more important that you discuss with both your rheumy and neuro.

Your neuro may feel that your SFN is from the Sjogren's (if he agrees with the Dx). Then other treatment options (like IVIG or immunosuppression) may be considered.

There are Biotene products for dry mouth that are available OTC. Be careful with the humidifier, as they required constant thorough cleaning when used regularly due to mold build up very quickly.

Hello en bloc, thank you for your response! It has lots of great information. Can you share what treatment(s) you've had for your Sjogren's and your neuropathy?

I should have mentioned that I did see an Ophthalmologist who specializes in the treatment of systemic diseases that are associated with ocular inflammation. Also, I don't believe he made the diagnosis based solely on the Schirmer's test, as he did an extensive exam and we talked at length about my other conditions. Of course, this is his opinion and we reviewed other things that contribute to dry eyes like age, environment, meds, etc.....

Your advice about seeing a Rheumatologist is excellent, thanks. I have a call into my Neurologist to talk with her about the Sjogren's diag. and next steps. I want to stay in medical system she works in and will ask her for a recommendation for a Rheum Doc as well. If a lip biopsy is necessary to support his opinion, then I'll follow through on that, especially if it leads to more aggressive treatment.

Thanks again for your information and guidance!

[en bloc]

Deb

I figured you must have seen an ophthalmologist, and he would have done various tests, not just the schirmer's. But none of the other tests can definitively Dx Sjogren's as they cannot see the lymphocytic activity. They can, however,very clearly determine if you have severe dry eye (which you do) and also whether abrasions (or other secondary problems) due to dry eye have occurred. It is great that he obviously did a full evlkautaion of your eyes and can see enough signs of damage and dryness to logically conclude that Sjogren's is a likely factor as the root cause (once he reviewed you medication list and determined that no meds you take cause these symptoms),

He sounds like he's on top of his game and ready/wiling to help you. The next step, however, should be to see a rheumatologist (and send the ophthalmologist notes) to see if a lip biopsy is necessary, since you're sero-negative for Sjorgren's antibodies. With all your other conditions, it may NOT be necessary...but best for a rheumy to make that call as they are the ones to treat your Sjogren's.

I have tried many things for Sjogren's. Of course I take PLaquneil, which if first line treatement for the Sjogrens' itself. This medication is a DMARD (disease modifying anti-rheumatic drug) that is an anti-malaria drug found to help some symptoms of Sjogren's (profound fatigue, joint pain and some say it helps the dry mouth/eyes) and also to slow progression of the disease.

Since I have neuropathy (both peripheral and severe autonomic) directly related to the damage Sjogrne's caused to the dorsal root ganglia, I have tried numerous medications to reduce PN pain & sensory issues and profound autonomic dyfunction. I tried Neurontin first and used it for years until I maxed out on the dose and still had pain/symptoms (but it did help greatly for several years before progression). I also tried numerous other meds that I couldn't tolerate (side-effects) or they just didn't work...like Cymbalta, Nameda, Lyrica, Lamictal, amitriptyline, and I'm sure other that I've forgotten.

I have also tried to treat the Sjogren's itself to improve the neuropathy with medications like steroids. Both long term, moderate/high dose (40-80 mg/day), and very high dose IV pulse steroids (1 gram a day for 3-5 days). The daily dose did very little (except help with joint pain). The high dose helped with some symptoms, but not enough to make it worth while...and the hefty price to pay in terms of osteoporosis, etc. But during severe flares of Sjogren's, it did help me greatly.

I also tried immunsuppression drugs like Cellcept. It also was helpful for certain symptoms. However, I am immune deficient as well and I got a serious life-threatening infection while on Cellcept and had to stop.

Like you, I have several other conditions and therefore take many medications. It takes a good team of doctors (that are willing to work together) to find an appropriate balance of medications to cover the most problematic conditions, and even the minor conditions, without creating too many side-effects. It really is a balancing act.

Right now my Sjogren's is treated with Plaquenil, Restasis, lubricating drops. My neuropathy pain (after 12 years since onset) is now treated with lower dose narcotics (Oxicontin and Percocet for break-though pain). Damage to the dorsal root is permanent, so basically it a pain mgmt treatment. I do take various cardiac meds for my BP and heart rate due to the autonomic neuropathy (also permanent damage) (Cardizem CD, Midodrine, Florinef, Imdur, and Toprol XR...and nitro as needed for chest pain due to cardiac spasms (autonomic neuropathy). Then there is GI meds for autonomic dysfunction too. I also receive monthly IVIG for both my immune deficiency AND my now new higher doses for my neuropathy. There is not great expectations of repairing damaged nerves, but more hope to slow progression before I can no longer walk.

I'm sure this is much more info that you probably wanted to know(sorry), but keep in mind that Sjogren's is NOT just dry eyes & mouth. It can start out that way, and a few people may stay with minor symptoms, but MANY suffer from the systemic effects of Sjogren's, because moisture is needed everywhere in the body. Lungs suffer when they get dry, same for GI track (constipation can occur without moisture in the track), and the nerve damage can effect so many organs. This is why a rheumatologist is appropriate for a complete evaluation so you know exactly where you stand and what needs help now.

I hope this is somewhat helpful. If you have specific questions that I didn't answer, ask again, and I'll address them. I thought I got the basis of what you were looking for, but don't hesitate to ask anything.

Best,
Anita