Just wanting to connect with other people that have Sjogrens with some type of neuropathy involement. Please list your symptoms and any medications you take to help. I am trying to decide on medications to take and want to focus on the meds that deal with the cause like the inflammation. Please any infor you have will be helpful to me because I don't think I have any tears left in my body..can't cry anymore and I need some input from others that know what I am going through. Thanks Mary

Me again..I think we are not allowed to recommend medications on here, but if you list the meds you take and if they work for you or not that would be helpful. I will NOT assume that you are recommending any meds for me to take. I am basically just researching to see what meds are out there being used. Thanks Mary

Please do a search on Silverlady. She was once very active here and has many posts about her experiences with Sjogren's.

I have SjS diagnosed, but I have some issue with the way it is diagnosed. The diagnosis of SjS is very loose these days. Do you want seronegative? Seropositive ANA, or ENA? Lip biopsy?

I don't post the meds I am on for privacy reasons.

I am on IVIG for my neuropathy and elevated ANA.

Good question..I am seronegative at this point with neuropathy involvement, but I want to hear from all those with sjogrens diagnosed or suspected with neuropathy going on at the same time. I too have my doubts about how they diagnose Sjogrens....thinking the criteria needs a check up. Dr. Birnbaum at Johns Hopkins Sjogrens clinic also agrees. Thanks for your reply

I will be really frank. I think a lot of people have side effects from meds, and are diagnosed with SjS. So do a lot of people with PN, have a diagnosis of SjS....and neuropathy can cause dry eye and dry mouth. I am not convinced of my diagnosis, because I am not positive for SSA or SSB, altho I have every other criteria met.

There is such a thing as Sicca Syndrome, and a lot of people with that feel they have SjS....when what they do have is due to some other etiology.

When I have a + SSA or SSB, I will believe I have SjS....same as when I have a + SCL 70, then I will 'have' Scleroderma, despite the fully nucleolar ANA at this point. I do meet the criteria for Lupus as well, even tho the antismith is negative, the C4 is low. C4 can be low in lots of autoimmune disease, however.

Many, many other autoimmune conditions have Sicca as a symptom as well.

I had Sicca for many years prior to getting a highly + ANA. I am not sure when the onset of neuropathy was, but I would say 10 years prior to the diagnosis of it.

I know I have some autoimmune process going on, and I know I have neuropathy. I am not fully sure the two relate. I do not have the specific antibodies, and they seem to stick with that criteria for all other autoimmune diseases in general, but not SjS. Some people seem to have just sicca and others like myself are half dead, and we have the same disease?? Eh, hard to believe.

SjS is becoming a dumping ground diagnosis.

Sorry to be so frank, but I think they need to figure out what is Sjogren's and what is Sicca.

Here is an algorithm for diagnosis.

http://www.doh.wa.gov/hsqa/fsl/Docum...-Guideline.pdf

Hi guys and gals,

This is my first post on this site, so apologies if I do it wrong.

After being mostly bedridden for the past 20 months, I was just diagnosed with severe autonomic and sensory neruopathy caused by Sjorgen's Syndrome. Cleveland Clinic wants me to get IVIG right away, since the sooner you start it the better it works (so they tell me). I have Blue Cross Blue Shield insurance. I am wondering if anyone else on here has been successful in getting their insurance company to cover IVIG for Sjorgen's related neuropathy.

I am so scared they are going to deny it and I will only get worse. I am already bedridden from the autonomic problems for about 20 months, my hair is falling out and I have lost 60 lbs. because I can barely swallow without choking on food. Those symptoms don't even bother me as much as the severe breathing problems I am having. I would literally cut off my legs if it would help me breathe better. It is terrifying not being able to breathe, and not having anything that helps it (oxygen, asthma drugs, etc. unfortunately do not help the breathing). Not trying to be a complainer, because I know everyone on here has major healthy problems too. Just wondering if anyone else is going through the same thing as me with Sjorgen's triggered neuropathy. I already have a chest port for my daily 1 liter IV saline (to help minimize my low blood volume, caused by kidney/nerve damage - also probably due to the Sjorgen's), so I am ready to get hooked up to that bag of IVIG right now. My docs are telling me it's going to be a long fight with insurance and that I may not be approved.

If anyone has had IVIG covered by insurance for Sjorgen's neuropathy, please let me know.

Thanks!
POTS Grrl

IVIG can usually be approved for neuropathy (regardless of the cause) IF you have documentation like positive EMG/NCV or skin biopsy showing small fiber neuropathy. IVIG is not normally approved for Sjogren's alone.

I too have neuropathy (both sensory and autonomic) from Sjogren's and received IVIG for many years. My initial approval was based upon selective IgG deficiency (but it helped the Sjogren's neuropathy) and later received it under a neuro diagnosis alone.

IVIG is not a instant fix. It takes time to see results. But I did find it helpful.

It doesn't sound as if you would have any problems getting the treatment approved with your severe case/ neuro symptoms, which certainly they've documented.

Hopefully they will approve you soon so treatment can begin.