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Would like to hear from people with Sjogrens

Autoimmune Diseases | Last Active: Nov 14, 2023 | Replies (76)

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@buttons5104

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.

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Replies to "Yes I do as well. I have all of the symptoms you mentioned. Going on 10..."

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.