Sjogren’s Syndrome – Introduce yourself and meet others

Something else to add 2 my list, thanks.
I have Remicade since 2008 for AS. So far its effective.

I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out...can anyone she'd light on this...

Hello @sistermac, welcome to Mayo Connect. I am sorry to hear about your cousin. Hopefully others with similar diagnosis can join in the discussion and provide some information. I was able to find a few sites that may provide a little more information if you have not already found them:

Mayo Clinic Sjogren's syndrome - http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren's Syndrome Foundation - https://www.sjogrens.org/

Is it possible for your cousin to seek a second opinion from a specialist? Thank you for being an advocate for your cousin. If you can, please share any progress or findings you make.

Good luck...John

Thank you John for responding, She has been to a neurologist, rheumatologist and has had MRI, scans and it seems she is getting worse..she can only walk a short way before stumbling and her vision is off...at this point it is my opinion she starts over a specialty hospital focusing on this type of disease

Welcome to Connect, @sistermac. I'm so sorry to hear about your cousin's diagnosis of Sjogren's Syndrome, but you have come to a great place to find information and support for her. You will notice that I have moved your message to an ongoing discussion here, about Sjogren's syndrome.

There are many members here who have had similar experiences with Sjogren's syndrome. Please meet @marylou705, @kyjeanne, @blindeyepug, @jillnc, @helloshelly7969, and @cmtg; I'm confident they will be able to give you some information.

Dealing with Sjogren's can be very frustrating; @sistermac, besides medication, what methods or treatment does she use to try to manage it?

I would urge your cousin to follow this up. It sounds like something more than Sjogrens to me. Mine is related to Psoriatic Arthritis. And Sjogrens occurs with other auto immune diseases. Her symptoms imply something else is going on. It can take forever to diagnose these things.

She has gone to about four different doctors..I think is a mistake since she is getting nowhere but worse...I hope you get better and thank you for this email. I will try to get her on this site as it helps to speak to others in the same position..God bless

Thank you for your good wishes. Just had my second dose of Cimzia. It is supposed to take 3 months to take effect. I also use Restasis for dry eye. But I can't remember how long or how many Drs I saw - we travelled a lot for my husband's job. It was a good ten years or more. First symptom was falling flat on my face because my right hip gave way. Quite spectacular when you do it in the middle of a restaurant! Without the benefit of wine even!!

I have major mouth issues. My doctor told me about 7 years ago that I had sjogrens and that it was "no big deal." He said I just needed disease modifying drugs, and they never worked so he changed them frequently. He refused to treat my mouth and watched as my teeth wore away at the gums. I learned not long ago that my gums were eroding now too and I fear I will lose all my teeth. I can take almost nothing these days without getting every severe side effect and I am desperate to find something that will help. I let my old rheum go a year ago as I was sick of him ignoring me. My mouth hurt so bad and was full of sores and he told me "they will go away." My smile was the only part of my body I ever really liked and now, I can't even smile anymore. Has anyone else had problems with their teeth? It is going into my ears now too and I can not chew anything without hearing noises in them, it is maddening..

I am sorry to hear about your tooth involvement. I have my teeth checked and cleaned every 6 months. On their recommendation, I use Phillips fluoride toothpaste once a day. Also use Biotene gel. Have used an electric toothbrush for years. There are also several chews OTC that you can use as often as you need them. A pharmacist can point you to them. Sounds like you need a new doctor.