Thread by @arianek

Ok autoimmune #NeuroSjogrens + Rheumatoid nerds - I’ve been reading again about #Sjogrens vs. #IgG4RD. My IgG4 has been persistently elevated for over a decade, rises w/flares. Highest was 3.10g/L (RR = 0.72-1.25). Currently 2.7. I’ve also had positive Early Sjogren’s Abs…

For about as long. The only time I had positive SSA/ANA was in 2021 when on IVIG, pre-Rituximab. When retested in early 2024 I was negative. There’s disagreement whether it was passive Abs from IVIG or real and nuked by Ritux. I still have positive Early SjD Abs.

Have positive Schirmer’s. Extremely dry eyes/mouth at night, milder in daytime. Severe Autoimmune SFN + AAN/Dysautonomia, MCAS, onset of debilitating joint pain in hands concurrently with dryness in early 30s. Mild respiratory issues. Hypokalemia and severe osteoporosis.

(Have been unable to get serious nephrologist workup for dRTA.) Disease symptoms responsive to IVIG, hydrocortisone, Cellcept, but could no longer tolerate due to side effects. Severe (near deadly, disabling) side effects from Rituximab and prednisone.

Have been without serious rheum or neuro care for over 2 years. Have severe GI complications and have never had proper GI care, have no GI doc. Saw multiple US specialists in these diseases this past year. Diagnoses: 1) NeuroSjogrens 2) NeuroSjogrens 3) NeuroSjogrens…

4) Probably NeuroSjogrens but possibly with major missing immune disease component and flags IgG4 disease again. Almost 10 years ago IgG4RD was “ruled out” by local specialist. I accepted this, but that doc went on to later malpractice me nearly to death.

So now I am suddenly wondering if that could have been a mistake too. All signs point to NeuroSjogrens, but medical journals have divided opinions on whether elevated IgG4 is an exclusion for Sjogren’s or rather common. I don’t know what to think.

The only biopsy I had (minor salivary gland) was an absolute hack job (serious damage, obvious first timer, shaking like a leaf, I shouldn’t have let him do it), so I don’t trust the negative result and neither have the US doctors.

But here I don’t meet the (overly restrictive) SjD Classification criteria, and have been refused care by rheum and now neuro (local neuro just dumped me too). I’ve been off IVIG 14 months and am relapsing very badly, esophagus is starting to fail. Any ideas how to proceed?

I’ve been told I can’t get on other biologics without a rheum or neuro who is on board. Plex is “not going to happen” here but could be bought OOP in Seattle if truly desperate. Most doctors locally refuse to see me or provide care. “Too complex”. I am at my wits end + exhausted.

I have no other options aside from trying to move to another province where it may be no better. I was approved for #MAID in 2022 when my medical catastrophe happened, but am trying very hard to continue recovering. But I *need* to be back on treatment asap. Any ideas welcome.🙏

ps. Tagging because surely the algorithm will crush this long thread: @elisa_comer @SarahSchaferMD @NeuroSjogrens @NeurologistMom

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