Would like to hear from people with Sjogrens

I was not diagnosed I am not sure I have Sjogrens My blood work does not fit but I have high ANA tiger and dry eyes dry mouth dry hair

The Sjogren's Advocate and Smart Patients are two very good websites for information. Smart Patients is a blog that others with Sjogren's share what helps them and feels like you have friends who are going through the same things you are.
So many doctors think Sjogren's is just dry eyes and mouth, but it's so much more.

Yes I do as well. I have all of the symptoms you mentioned. Going on 10 years. Evolving. Numbness all the time in fingers/toes/feet going to sleep during day and at night sometimes my entire arm or part of my hand or leg goes totally numb. At one point I was in ER with partial face paralysis from this.

Brain MRI -normal. ER sent me on my way. Didn't know what to do.

Brain Fog- I have it. I can't get much done in a day. It is a hard push to get thru the day.

Dry eyes, nasal passages, trouble swallowing, joint pain, now chest pain, new breathing problems, Reynolds, advance sudden onset carpal tunnel was the first real "symptom" which left me unable to use my hands for 9 months (they believe related but never clear how)- overgrowth extensive. Positive ANA and sun sensitivity (sun just wipes me out completely the next day). Can't go near it. The positive ANA and burning skin started it years ago. But over the last 5 years I find I am frozen in bed- at times-can't move-at all. And only in the last year did they run the newer blood test for Sjogren's- and this showed up as such like a light bulb.

Here is what I find does help for me:

Terveya- its a new kind of nasal spray for dry eyes- it helps significantly
I had my tear ducts cauterized permanently-
I try to go to a dry eye specialist (there are very few in the country) who uses a laser to warm and release tear ducts- it helps tremendously- but not covered by insurance- so catch 22- bec its costly

Stay away from sun- totally

And the silver bullet-
Cholesterol mediations-I kid you not. They are anti-inflammatory. I am on two and I am very sure it makes a significant difference for my joint pain and neuropathy.

Yes brain fog- I can barely concentrate. I'm not depressed. I am overwhelmed and I hurt 24/7 and can't feel my feet or lower legs often= and the brain fog leaves me in a daze for various times during the day. I'm on autopilot pushing thru the day not to give up.

I am worried financially as well as medically as are many of us on the board- and as I go to doctor to doctor as this gets progressively worse- I wonder if there is any other options?

. I am trying to get on Hydroxychloroquine - but so far can't find lactose free version. I'm looking.

As for biologics- I didn't think we could even qualify insurance wise if Sjogren's diagnosis- do we?- I thought that would only be given IF lupus diagnosis. But Sjogren's seems to fall thru the cracks - Has anyone found differently and gotten insurance to cover it? If so which one have you tried and how did that go?

My heart breaks for us all. It is hard. So hard. Each day.

Please take care and reach out if I share my story or help in any way.

I did a quick search for lactose free hydroxychloroquine and found that Amneal in Australia makes one. Not sure if there'd be a way to obtain it here; perhaps reaching out to the US Amneal organization would be a start.
I have been on Rituximab, a biologic, for four years. It makes all the difference for me. It takes a while for it to kick in, and then I feel it when it begins to wear off.
There are quite a few other individuals with Sjogrens who are on Rituximab. You can read about various experiences clinically as well as some insurance struggles on the Smart Patients website.
My rheumatologist had to fight initially to get it covered, but he persevered and it's been approved every year since. I believe if you have systemic manifestations such as neuropathy you have a better chance of getting the drug.
Best wishes! This is a cruddy disease on so many levels.

Thank you kindly.
My fear is that insurance/dr will insist I go on a long stint of prednisone before ever approving the biologic. That I don't want.

I wonder how to avoid that-

I feel this is so poorly understood and the tests seem to miss it - leading to more confusion as to the potential cause(s) and/or best treatment.

So here is another question of the group- for those of you with Small Fiber Neuropathy- how was that diagnosed? It seems there a host of rare causes (nondiabetic) causes of SFN- and I wonder if anyone has found a doctor to explore this in detail.

I wonder where to go- the local doctors at the ER neurologists admitted no one in the area had any expertise with this. Has anyone have any suggestions of who/where on the East Coast they find helpful?

Forgive me these many questions- I'm trying to figure this out.

Hi. I haven’t been diagnosed with Sjogren’s yet, but have many signs/symptoms of it. I have small fiber neuropathy. I had a QSART test performed by a neurologist in Pittsburgh. It measures how much you sweat. Electrodes are placed on an arm and leg to measure sweat. It’s virtually painless. Initially I tried to have a nerve biopsy, but couldn’t find anyone to do it, not a neurologist or dermatologist. I see Dr G. Small, neurologist at Allegheny Health network. Hope this helps.

@buttons5104 You can find more experienced doctors at comprehensive medical centers or at university hospitals. Do you have 1 in your state. Ask you primary care doctor if they will give you a referral to a doctor at the large medical centers. They can also send all of your medical records ahead.
ER neurologists usually don’t know all this information because they are experts in major accidents.
Will you look up the medical center or university hospital in your area and get some information on seeing a doctor?

I went to a neurologist. They would only see me for neuropathy not sjogrens he sent me for blood tests and vein tests he said many times they show normal he told me no matter what tests showed I do have small fiber neuropathy all over he told us to get this book. Small Nerves, Bug Problems by Todd Levine MD get the book amazing read. Now I am on my way in next few weeks to a new Rhematogist until I can get a new one at Mayo Clinic.

Fantastic- I'm going to search for the book right away.

Thank you all!!!!!!

We would all like this. My case is complex. Its affordability. Drs need to communicate especially with someone having multiple auto immune