Sjogrens in my brain!

Posted by dianaislooking @dianaislooking, May 17 8:09am

I am wondering if anyone else has Chronic Sjogrens that has entered the Central nervous system and the brain.
I am getting more and more lesions affecting every part of my body. They at first misdiagnosed me with MS. Those medications they found caused major reactions and I was told I was allergic to them. 20 years later I was told it was Sjogrens not MS and started on Plaqunel. I am allergic to it as well and can only take half dose.
I am scheduled for yet another MRI (they decided to one every year) due to some more changes in vision and blood pressure which they can't explain. Sjogrens has already taken so much from me. I have at this time 7 large leisons and it it has spider webed across my brain. What next? Any insight or discussion from anyone out there who is in this boat?

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minnesota10 | @minnesota10 | May 17 9:20am

Do you have allergies.
I have a number of allergies. Milk, eggs and aluminum dye. Are the worse for me. Our meds are full of one or more of these.
I to have Sjogrens, I have had it for years. Write things down so you can track yourself.
Food, good day or bad days, pain levels and so on.
No, you have to be your own detective.
I wish you the very best

urbanjane | @urbanjane | May 17 6:32pm

I am also allergic to Plaquenil, I loved it for the 13 years I could take it.

dianaislooking | @dianaislooking | May 18 9:29am

In reply to @urbanjane "I am also allergic to Plaquenil, I loved it for the 13 years I could take..." + (show)

I was allergic from day 1. My neurologist tried twice and after the second time he tried to put me on it said half dose is better than no dose. But the Sjogrens keeps getting worse.

kerriihart | @kerriihart | May 19 5:47pm

Do you have aching arms and hands? Very dry face sometimes with red and itching? That's a core symptom.

minnesota10 | @minnesota10 | May 20 8:42am

Yes, I have had this for years. When I came down with it I don’t think it had a name. It has been that many years.

megangreen | @megangreen | May 21 5:39am

In reply to @urbanjane "I am also allergic to Plaquenil, I loved it for the 13 years I could take..." + (show)

urbanJane Can you explain what symptoms you developed which indicated that you became allergic to Plaquenil? Thanks Megan.

kensiejames | @kensiejames | May 21 7:05am

I have had Sjogrens for 16 years.
In addition to your neurologist, are you seeing a Rheumatologist?
In 2024 the Drug Administration (FDA) granted nipocalimab Breakthrough Therapy designation (BTD) for the treatment of adults living with moderate-to-severe Sjögren's disease . You should also get yourself over to the John Hopkins Center for Autoimmune Diseases. John Hopkins is known to be the best rheumatology clinic in the U.S.
I wish you all the best 🙏🏻