Newly diagnosed and confused

Hi! I’m Lori and was diagnosed just a couple months ago. Probably like many, I’m confused, unsure what is a symptom of what, and somewhat questioning if this is really it. Any input would be so helpful!

Mine started off with just right eye pain. Went to the eye dr said everything was great, just a little dry eye. He asked if I had high bp (which I do not) saying the back showed some signs of that, but looked back at records and said it’s been like that for years so no big. Went back in a month as my eye was half red and he again said no issues, use drops and talk to my pcp about ANA testing.

About that time waiting to get in to my pcp I started having some numbness, my leg fell asleep for hours, had burning sensation in my right arm. dr Did the ANA and an MRI of my brain to rule out MS. ANA came back positive 1:320 titer speckled and positive RO antibody. Sedation rate minimally elevated. sent to a rhuemy- Lupus antibodies were negative, RF negative (until last week it’s now minimally elevated) and no other tests done. Complained of my neck to shoulder pain Down my right arm- told it was tendinitis from lifting my son.

September to October I felt pretty good. Nothing new happening, no pains or numbness other than my right arm which was getting better. November hit me like a freight train. Started taking 200mg of plaquenil and about a week in I started having pain in my left arm, my hands hurt and a bit of itching. Stopped the plaquenil- felt better for a couple weeks. Woke up thanksgiving day with my right arm so painful and stiff I cried. By the next day it was also my left shoulder and my chest was on fire like I had bronchitis. ER did a chest CT and it was fine. Went to the Dr CKP levels were normal, put on prednisone. The prednisone hasn’t helped much. As I right this my inner right thigh muscle hurts so bad I can barley lift it without pain. Went and saw a neuro that said probably fibromyalgia.

I have no dry mouth. In fact most of the time I feel like I have more saliva than I know what to do with. It is consistently just my right eye that gives me issues, most days are not too bad a few days there isn’t enough eye drops in the world. My palms feel rougher and have noticed they dry out faster- it’s also winter so who knows?

I have some Telangiectasias spots (one on finger, two on my face) but my rheumy has dismissed this as an issue for scleroderma or crest. Her help in understanding Sjögren even though she has diagnosed me with it is minimal as she hasn’t told me what it can do other than dry eye and mouth.

Is it a thing to not have dry mouth in the beginning? Weird it affects just one eye? What I’m going through right now is that what a flare feels like?

Thanks for listening! I feel pretty alone as no one I know has any type of pain or chronic illness that I have nowhere else to go.

Welcome Lori! Yes, Sjogren’s can have some pretty odd presentations. And it’s not uncommon to have/develop fibromyalgia on top of autoimmune conditions.

Did you talk to your doctor about stopping the plaquenil? I would encourage you to always work with your doctor with any concerns of side effects. Hopefully you can get things under control shortly.

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Thanks for the feedback!

Yes, when I started feeling off/worse after upping the dose to 400mg I talked to her right away and agreed to stop the Plaquenil. I stopped it about 30 days ago.

Since then I just feel like everything has been downhill. I go back to my rheumy next week.

That makes sense. There are other options that are used for Sjogren’s, including biologics. Keep working at it. It takes time, so patience is needed. Sometimes it’s really frustrating waiting for meds to take effect.

Hi Lori,
I’m a Lori also. Nice to meet you. And yes, Sjogren’s can have some odd presentations. My diagnosis was literally put off for years due to that. Scary as it was, I was also relieved and validated by knowing what it was and that it was real.
On the Plaquenil, I am on 200 instead of 400 due to my weight and its been great.
I developed Fibro about a year or so ago…that has been a bigger challenge than SS in some ways.
Since I can’t have any kind of anti-inflammatory, I go more natural routes and lots of yoga to help keep going.I really hope they find something that works for you.

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